This is really, really long, but I wanted to type this whole neurotic episode. It's a reminder for me, and I hope it will help others (Andrea!) when they wait for results, to not always assume the worst. Sometimes the brick doesn't fall on your head...

About 6 weeks ago I went for an MRI because of some problems I had and my Oncologist wanted me to have one done. Okay, this isn't entirely true, I planted the idea of an MRI in my Oncologist's head like a hypnotic suggestion because my regular doctor didn't think it was necessary since I had one a year ago, but I was having dizziness and vision problems again. I knew my Onc was my last chance. You learn the fine art of what I like to call medical manipulation when living in a small town in Oklahoma.

Anyway, I was the last appointment of the day at the hospital where the MRI is done. I really thought that they were going to find something this time, I had been so dizzy the previous week that I had to go to the ER, I had almost fainted at work. The night before the test, a friend of mine had told me that if they find something on the MRI, chances are they wouldn't let me drive home. So that whole day I had gone through work with that one thought hanging over my head, what if they ask me if I have someone to drive me, after the test is done? I don't have anyone to drive me around town. And in addition to that panic, it wasn't a matter anymore of waiting for the doctor's call, there was a possibility I would know THEN! So I sat and waited in the dark waiting room, almost shaking from nervousness, until the MRI Tech came and got me.

When I got into the area where the MRI would be done, the tech took my purse and locked it in a locker, along with my jewelry in this little plastic tupperware cup. She then asked me what I wanted to listen to, since they give you headphones and turn on a radio station of your choice. I told her the local classic rock station would be good because they play a good mix of classic rock. Little did I know that after 6:00 pm their format changes.

The tech put the headphones on me, and covered my eyes with a washcloth. I always dread the MRIs, I'm not normally claustrophobic but I will feel panic setting in every couple minutes, as soon as I go in the tube and I constantly have to talk myself down and take deep breathes to regain composure. So she slides me in and in a few minutes the music starts, really loud of course, to drown out the clunking of the machine.

It turns out that after 6:00 pm, the local radio station plays tracks of CDs, rather than individual songs. It also turns out, that on that night, at 6:15 pm, they decided to play the entire CD of Highway to Hell by AC/DC. Mind you, the tech had the radio turned up to the equivalent of what an Amtrak train speeding by would sound like if you were standing a foot away from the tracks. So the entire time of the MRI, which was about 4 hours- well, it seemed like 4 hours but was probably 20 minutes- I lay there with my eyes wide open beneath the washcloth, knowing that I was in fact, on the Highway to Hell for sure, as the endless music tracks blasted through the headphones. Every 3 minutes, my fears of whether my ears were bleeding was replaced with my fears of being in the tube, then my fears of Highway to Hell being an omen, then I would talk myself out of that, and then I would start envisioning that the Tech would not unlock the locker with my purse after the test, because my car keys were in it. Then the cycle would start over.

Finally, the Tech announced over the headphones that she was done, and rolled me out. As I was shakily getting up, echos of "highway to hell, highway to hell" reverberating in my brain, she told me to wait, that I had forgotten to fill out a form. I held my breath, because I was SURE that this was the do not drive your car form, but it was only the usual TB form, that the hospital always had you fill out.

While I was filling it out, I commented on her pen, how it was a cool pen. I actually was making conversation as a plan to see if she made eye contact, having lung cancer has made me try to develop an immediate bond with doctors, nurses and technicians so that I can somehow develop my telepathic powers or read my new friend's body language to see whether the news is bad or good.

Anyway, she told me that she got it at Walmart, it was around $10.00. So being nice but to be totally honest not even caring about the pen I was so nervous still, I told her that I would have to get one. Suddenly, she thrust it toward me and said, here, you can have it. I told her that I couldn't take her pen, and she said that yes, I could, she had another. Again, I told her thank you anyway, and once again she told me to take it, she insisted that I have it. By now I was starting to get alarmed.. why did she want me to have her pen so bad? What did she see that she felt sorry for me? Then she went to the locker and got my purse and the cup with the jewelry. I went to give her the cup back and she said, Why don't you keep that?. And I said, Are you sure? and she said, Yes, you keep it, we have plenty!. By this time I was getting really stressed and I said to her, did you see something on my MRI that your being nice to me? and she laughed and said Oh, stop it!. Of course this wasn't a yes or no answer and didn't necessarily put my mind to ease!

The next day at work I was a nervous wreck. There were a handful of people there that knew I had gone for the test and when they asked me how it had gone, I told them glumly, The tech gave me her pen. They just looked at me with a puzzled expression and would inch away, afraid to ask I'm sure. No one, of course, except myself got the pen thing, and the significance that I was sure was there. I was SURE that the Tech had given it to me out of sympathy. And to make things worse, every time I went in my purse, the pen would somehow attach itself to my hand, mocking me, I was sure!

I called my Oncologist's nurse at the end of the day, and as usual, the test results weren't in, they are NEVER in when I call, and I had to wait for a call back. Needless to say, I don't "wait" well but when the call did come, the results were negative, and my MRI was clean. I guess I still have the pen in my purse, but can't remember anymore which one it is... it lost the large place it occupied in my thoughts as soon as I heard my test results were negative...how powerful our minds can be!

*Disclaimer: I am only really neurotic when I get odd pains or at test time. I only share this with you all, so that you will know that your not alone if you become temporarily insane, and that I know that I'm not alone when I get wacky. I actually look perfectly sane when seen on the street .

edited 1 time to take out strange symbols that appeared in my post

_________________
Debi
50 years old
Stage 1a-nsclc,1.3 centimeter, adenocarcinoma
Surgery June 16, 2003-upper & mid lobe removed
17 lymph nodes removed - all clear
No chemo or radiation

Oh Debbi,
What a story! Unbeliveable. Thank God you're ok. No one deserves this. Unreal.
Joanie

_________________
Joanie C SIX YEAR Survivor
[size=9]Diagnosed Limited SCLC, April 2002
Concurrent Radiation
(16 Doses twice daily)
And
4 Rounds Cisplatin/Etopside Chemo
All therapy completed June, 2002
Back to Work July, 2002
Diagnosed Hypothyroid, Nov. 2004
(due to radiation)
Evidence of healing on each CAT scan.
All scans Clear
Last Check Up Sep. 2005 - NED
Dec.12, 2005 Uncontrolled bleeding from tumor cavity. Emergency surgery performed which closed the hole permanently. Healing continues and I look forward to a bright future.
June, 2006 - NED on CAT SCAN. Scan shows IMPROVEMENT from December. Hurray! Experienced fevers through summer. Took antibiotics.
July, 2006 six month Oncologist visit. All is well! Go back in December. Hurray!
August 8,2006 Sudden,uncontrolled bleeding from surgery site. The tumor site was repatched with my own aumentim. All looks successful and I was released from the hospital after 33 long days.
Oct.19, 2006 bleeding returns.Tests reveal hospital-acquired germ has eaten away at tumor repair sight. Results in 2 more operarations and 13 days in hospital.
Recuperating at home. Daily nurse visits to change bandages on incision site.
March, 2007 - NED CAT Scan. Incision healing nicely.
April, 2007 - 5 year anniversary! Still bandaging the incision daily.
July CAT Scan - NED once again.
July 2007, operation to open surgical incision to promote healing. Still bandaging daily.
July, 2007 - was called a "walking miracle" by four doctors at the hospital. They were truly amazed to hear my story.
1/14/08: Lost my best pal, Dagwood, to old age at 14 years on . He helped me thru this struggle and I will miss him forever. I still consider myself to be "Daggiesmom."
Feb. 25, 2008: Finally had the repair surgery (9 hours and 7 days in the hospital) to close hole in my bronchus and to close surgical packing hole in back which has been open for 16 months. I expect to be healing for a few months.
January 2009 - I've healed nicely from the February operation and the CAT scan today showed NED once again!
March 11, 2009. Hemoptosys again and admitted to hospital. Due to bacterial infection. Bleeding stopped and I'm on antibiotics. Seems I am prone to these bleeds?

Debi,

First I am very happy you forget which pen it is.

Secondly, I think you should submit this story to some newspaper or magazine. You are a very good writer and the points that you make are important.

_________________
Ginny
Please use gdecoursey@aol.com for email.

Earl born 1/28/42 - dx 9/21/02 - died 8/18/04. He was the sunshine of my life.

My dear friend, there is no way to tell you how much I get this................just know..........we have a lot more than Bill Wilson in common!!!!
Love the story
Love the happy ending
Love you
Pat

_________________
Brian 6-4-48 - 1-1-06
Brian dx w/ NSCLC w/ nueroendocrine features/adenopathy, & mets to liver following routine Chest x-ray >>>> CTScan,needle biopsy,PET/CT fusion scan.(2-2005)
Lung tumor inoperable due to location. Radiation not an option due to Liver met. No discussion relative to prognosis......
3/2/05 1st cycle Cisplatin / VP16 - Tolerated fairly well.
3/23/05 2nd cycle - really knocked Brian for a loop. Lots of nausea and weakness.
4/5/05 scan 4/13/05 (onc visit/results/begin 3rd round:mixed news: reduction in tumor sizes TX plan: 2 more rounds of Cisplatin/Vp16 Weekly labs to watch low hmglbn (injections prn)
4/20/05 Brain MRI (Bri joins empty head club!)
4/27/05 Portacath installation
5/4/05 4th round cpltn/VP16 much difficulty w/ side effects.
5/10/05 scans show no further reduction of lung or liver tumors.
5/25/05 5th cycle Cis/VP16 postponed till 5/31/05 (need time to rebound a bit) round 5 was rough: exhaustion, labored breathing, fever, anxiety.
6/23/05 Doc appointment to address above and okay Tarceva start. Lung Xray done to check for pneumonia as possible explanation for fever.
6/24/05 Begin Tarceva 150mg daily.
next scheduled onc appt or PRN for 8/4/05
6/27/05 OOPS PRN came sooner rather than later>call from onc: chest film showed lung tumor growing quickly
6/27/05 CT scheduled for 7PM
6/30/05 Bad news per CT: progression. Brian is too weak for more chemo so praying that Tarceva will halt growth while Brian gathers strength to fight on.
8/2Scans
8/4/2005 onc appt:Bad news Rapid progression. Off Tarceva.
8/4 began Carboplatin/CPT-11 Praying!
9/1/2005 Chemo had been postponed due to low white blood cells, but began again today.
9/8/2005 next infusion
Brian is very ill, problems w/ voice. Scans & Visit moved up:
9/16/2005 CT Scan
9/19/2005 Onc says scans show significant reduction in tumor volume. Plan is to continue CPT 11 alone for 3 more weeks then 2 weeks off so Brian can gain strength for family wedding in FL on 10/22/05. Carboplatin has to be stopped due to progressing nueropathy.
10/17-19/05 Bri hospitalized with abdominal pain and fever.
10/20-24/05 FL for wedding (Brian was really too sick to go, but we realized that too late)
10/27/05 Scans taken during hospitalization show remarkable progression of disease. Brian begins Alimta and Sandostatin.
He is very ill and spending more and more time in bed.
11/10/2005 No more Alimta. Liver enzymes out of control. More progression. He is receiving Navelbine and low doses of Carboplatin. Brian continues to trend downward.
12-22-05 Onc says no more tx. Brian is too weak.
12-24-05 Hospice called in.
1/01/06 Brian is called Home.
Brian's love remains a great gift. I miss him like fire.

Debbie

My heart goes out to you, Things like that become so real there is nothing anyone can say or do to convince us otherwise. I am glad you shared that story, because I too went thru something similiar earlier in the week with my mom. No we are not crazy!! Definfetly take the advice and send your story to a magazine you certainly have a way with words. Glad to hear you are A-OK.

Kim

_________________
Kim Daughter of Ron, my second parent to be DX woth LC

9/10-DX Stage 4, NSCLC, both lungs,liver and possible sholder mets. Will start Chemo in 3 weeks

[size=84]Kim, daughter of DeAnne
Dx: 6/29 nsclc Stage 111a-b, Tumor in trachea inoperable. CT & Bone Scan show cancer has not spread
6/30 Taxol/Carboplatin 6 wks once a wk low dose
7/1 Rad, 33 tx
8/26 High dose chemo, taxol/carboplatin once every 3 wks. Bad side effects after 3rd day, but much better after 5 days
9/14 Rad doc says all is well, next scans 6 wks after chemo.
11/4 All chemo finished. Hosp. because of debilitating pain. Scans show NED!!
11/15 Colonoscopy and endoscopy, esophagus stretched
11/18 Kyphoplasty surgery for compression fracture in back. Osteoporosis. Helped back pain, still pain in abdomen
12/15 Better. Only Neurontin for pain. No strength, moves slowly, breathing compromised. Docs have no reason. "In her head" - thinks she has to have oxygen when she doesn’t. Will start exercise program in January.
2/1 full head to toe ct scan shows NED.
2/17 Shingles. Hopefully we got the meds in her quick enough for a easy time with this.[/size]
1/06 Still NED, although has more worrisome problems with COPD.

Although the cancer never returned my mom passed away 10/20/2006 peacefully in her sleep. That was the biggest blessing she received as there was no suffering. No Autopsy was done, but doctor signed off on DC saying heart disese as the cause of death, I think it was a broken heart as Mom never really got thru the death of my son and she was ready to be with him. May they both rest in peace and watch over me. I love you Mom and Jaybird...

Glad to hear that all turned out well, Debi. You did a great job of putting it into words. I know what the wait is like.

I had some blood drawn about a week before my bronscopy was done. When I went for the test my pulmonary doctor asked why I didn't have the blood drawn at the lab. I replied, I did. He thought that the report had got lost. He called the lab at the hospital and guess what...They had no record of me being there. Not only was blood test lost but I had to have it done over and wait on the results twice.(another week)

Anyway, glad you are ok. BTW, did they find what was causing the dizziness to start with. I have the same problem at times.

_________________
Bruce
-------

03/03 CT Scan showed a 7 cm mass on left lung as well as a spot less than 1cm on 2 lymph nodes. Biopsy was done and was Dx with NSCLC Squamous Type.
03/03 Bone, PET, Pelvis and CT of Brain showed no Mets outside of Left Lung (except on the lymph nodes).Surgeon said he did not know if he could get it once he got in there. After 25 Radiation treaments and 5 weeks of Carbo/Taxol. Surgeon took another look at CT and was well pleased with results. I was never given a Stage
6/03 Complete Pneumonectomy of left lung.
CT and Chest x-ray ever 3 months (rotated each 3 months).
12/03 CT showed small cysts on liver. Onc is not worried about them.
3/04 CT shows cysts are the same. Also a hiatel hernia. Onc is very pleased with my progress.
12/04 to Present
Scans continue to show show NED.
11/05 PFT shows some improvement as compared to 12/04 PFT
1/06 Small nodule (1 mm) on right lung
5/06 Nodule is gone from CT
8/06 Still NED
12/06 Still NED
12/07 Still NED. Doctor says he will discharge me in 6 months if I remain clear
6/2008 Doctor released me and said he considers me cured
6/2009 Pneumonia. WBC elevated
7/2009 Dx with Chronic Leukemia (CLL)

Debi,

I SOOOOO get this, but I really don't think people who haven't been through what we've been through really have a clue about that kind of anxiety.

Right now, I am off work for two weeks, using some vacation time, because I have a chest x-ray coming up June 1, and I have so much anxiety and tension leading up to one of these appointments, I can't be at work. I tried to last time, and when I wasn't on the verge of tears, I was ready to tear heads off.

I know two weeks is a little extreme, but it's working for me so far. The really good thing about my surgeon's visits is that I get the chest x-ray about an hour before my appt, and he tells me the results at my appt., so I don't have to wait for days to see results. I always try to 'read' the face of the x-ray tech, but that never, ever works as they are friendly when I go in and don't change a bit during the few seconds it takes to get the film.

I'm very happy to hear though that your MRI came out ok, and hey, you're approaching the two year mark just like me, so maybe it's time to be happy, ok?

I know, I know, easier said than done.....

Cindy

_________________
age 56
surgery 6/20/03, stage 1B, upper left lobectomy
started adjuvant chemo on 08/14/03
3 cycles--cisplatin/gemzar
finished chemo 11/6/03
now 9 years post-lobectomy, annual x-ray and follow-up with surgeon
follow-up with oncologist every year/bloodwork and clinical exam

2001 early stage breast cancer/surgery and radiation only, no chemo needed. Mammograms once a year,

Just passed 11 year mark for the breast cancer and 9 year mark for the lung

Hi Debi,

First, I think I would have had to move or scream or SOMETHING to get outta that tube with that music!!! You poor thing .

Second, so GLAD the MRI showed nothing to be of concern about .

Third, I am SOOOOO glad you posted this today. I was just talking to my husband this AM about how NO one understands the anxiety of feeling a new ache, noticing a little bump, or waiting to GET the test or the results of tests such as x-rays, CT scans, MRI's, PETs, etc. - no one but all you guys here . I do not even mention it to some of my friends who think everything is just the way it always used to be. They either do not want to hear, or just don't really get it. Doesn't matter which - can't really talk about it to them.

We are here to understand, Debi. You are EXACTLY the same as ALL of us and that is a good thing , I think.

Hope your dizziness has subsided for you. Keep us posted if there are more tests coming up. We will all be here for you again - as ALWAYS!!

Kasey

_________________
Kasey ~ 8 year survivor ~ Stage IIIb 'inoperable' (yea, right!) lung cancer
9/20/04 Dx lc
9/24/04 Bronchoscopy
10/08/04 CT guided needle biopsy
10/14/04 Dx Pancoast tumor - NSCLC 111a(?) - inoperable - incurable
11/02/04 2nd opinion - Sloan-Kettering - concurs with local dx and tx
11/03/04-12/02/04 Radiation x22 chemo x5 taxol/carboplatin
11/04 - 3rd opinion - FoxChase -turned away
11/04 FOUND LCSC & HOPE
11/04 4th opinion NIH - surgery possible
1/04/05 Successful surgery - RU lobectomy - all margins, nodes, and path reports are NEGATIVE
2/05 chemo x2 taxol/carboplatin
3/05 Esophagus stretched twice
4/06/05 bloodwork, chest x-ray, CT scan, PET scan, NED
5/05 2 more esophagus stretches
7/13/05 bloodwork, chest x-ray, CT scan, PET scan, brain MRI, NED
10/05/05 bloodwork, chest x-ray, PET/CT scan, NED
1/11/06 bloodwork, chest x-ray, PET/CT scan, brain MRI, NED
4/05/06 bloodwork, chest x-ray, PET/CT scan, NED
6/10/06 emergency appendectomy
7/12/06 bloodwork, chest x-ray, PET/CT scan, brain MRI, NED
9/26/06 bloodwork, chest x-ray, PET/CT scan, NED
1/10/07 bloodwork, urinalysis, chest x-ray, CT, PET/CT scan, arm CT, brain MRI, NED
7/11/07 bloodwork, urinalysis, chest x-ray, PET/CT scan, brain MRI, NED
1/9/08 bloodwork, urinalysis, chest x-ray, PET/CT scan, brain MRI, CT w/contrast.....mm 'spot' lower right lobe - watch and wait 3 months
4/8/08 bloodwork, urinalysis, chest x-ray, PET/CT scan, NED
10/14/08 bloodwork, urinaysis, chest x-ray, PET/CT scan, brain MRI, NED
4/15/09 bloodwork, urinalysis, chest x-ray, PET/CT scan, brain MRI, NED
10/13/09 bloodwork, urinalysis, chest x-ray, PET/CT scan, brain MRI, CT/contrast, NED
4/13-4/15/10 bloodwork, urinalysis, chest x-ray, PET/CT scan, brain MRI, CT/contrast, PFT, echocardiogram, EKG, stress test, NED
4/11-4/13/2011 bloodwork, urinalysis, chest x-ray, PET scan, CT scan w/contrast, brain MRI, NED
4/16-4/18/2012 bloodwork, urinalysis, chest x-ray, PET scan, CT scan w/contrast, brain MRI, NED

Debi,Debi,Debi,Next time you do this take your cell phone in the MRI with you.You can call Bruce or me and either one of us would be glad to come to Oklahoma and drive you around town.I have an exquisite collection of fine pens you can pick from.Bruce will sing Highway to HEALTH or any other AC/DC song you like.We will hold your purse while your in there so it isn't locked up in locker.Now all we have to do is make you quit being dizzy.That may be difficult but I hope and pray it is something simple and not serious causing it.LOL.

Very happy your MRI was clean.

_________________
dianosed 04/29/2003 nsclc***left lung removed 06/18/2003***two checkups NED *** cancer back 10/10/03 mets to right lung *** 7 rounds chemo carboplatin & taxol at same time with 7 weeks of daily radiation***01/04/04 shrinkage***04/04/ still stable***07/04/04 stable***10/04/04 no change***03/04/05 cancer spread to windpipe blocking 80% of airway and also bottom r. lung and stump where l.lung was removed***03/24/05 had laser surgery to open windpipe & stent put in***03/24/05 chemo and radiation again same type and amount***07/20/05 tumors shrunk but not gone and new tumor in top r.lung***remaining lung in bad shape with lots of scar tissue***10/20/05 no evidence of more spreading***01/31/2006 scans stable***03/13/06 increased cancer in middle of chest and airway***06/22/06 no change***06/05/06 prostate trouble and catheter from 06/06/06 until 09/14/06 when surgery on prostate (no cancer)***10/08/06 spread again 3.5cm tumor on brain and 6.5 cm tumor back in middle of chest again***have done 14 WBR tx's and waiting for 1 x-knife tx upcoming***more chemo upcoming***12/20/06 no more chemo or radiation to chest area***placed on pallitive care***they will do as possible as anything arises***follow up mri in late january for brain tumors***also may need stent in esophogus for severe reflux and restricted size of esophogus***only two options left,treat and be very ill with almost no chance of getting or feeling better or maintain maximum quality of life as long as possible and be treated for comfort as problems occur.I am at the stage of this where I CHOOSE QUALITY.

I have a great wife,3 daughters and son-in-laws,5 grand daughters,1 grandson,and 1 great grand son.My goal in life is my 100th birthday as it always has been.

----------------------------------

picture is of me and my great grand son.

Debi,

So glad your MRI was clear. I do know about the anxiety!!! I almost didn't read this because I am going for an MRI in about an hour and I was afraid to see what you were going to say. I got the same thing with the music (loud and hard rock), I think I am going to request classical this morning, maybe alittle more soothing.

I hope you can find the cause for your dizziness and that it is nothing serious - could it be dehydration? I have not been dizzy but have some vision and balance problems - I am hoping that it is just the residual effects of the PCI.

Thanks for sharing your story - it made me feel not quite so alone this morning.

Love and hugs,
Nancy B

_________________
6-Year Survivor, Stage 1B NSCLC Adenocarcinoma/2 Year Survivor, Limited SCLC.
Upper left lobectomy February 2000,no further treatment.
Completed 2 half-marathons in 2003 to raise money for cancer support.
All of you have been a tremendous help to me.
Thank You!
APRIL 2004, 3 month check up shows 1 cm nodule in what is left of my left lung. Too deep in the lung and close to my heart for needle biopsy. Looking at surgery to biopsy it. PET scan on 5-7-04 to rule out cancer elsewhere that has met to the lung. All clear so going to surgery.
6-2-04 Wedge resection of left lower lobe.
Limited SCLC - Carboplatin and VP16 started 6-29-04. PCI to follow chemo and possible lung radiation. Finished chemo 9-8-04. Started PCI 10-19-04 - 20 treatments. Now in the "wait and watch" mode.
3-2-05 lung scan - all clear. Next scan in 3 months.
6-05: Lung, abdomen,pelvic scan and brain mri - all clear.
7-05: Pain in spine area, bone scan, all clear. Next scans end of August.
9-1-05: Scans clear. Brain MRI soon.
5-25-06 Enlarged lymph node seen in latest ct scan. Lights up on PET. It is right on the bronchial stump where the lung attaches. Brain MRI on 6-23-06 to rule out brain mets and pulmonary function test scheduled for 6-27. If all ok will then go to surgery (3rd time) to remove the rest of my left lung (completion pneumonectomy).
Surgery on July 10, 06. Did not remove the rest of my lung, turns out to be sc again so they left the lung. Cleaned out some scar tissue and glued it shut. Left lung was leaking so was in hospital 6 days.
Off pain meds and back to work on the following Thursday. Had port installed and they discovered a blood clot in the jugular so 10 daily shots of Lovenox and a couple of months on Coumadin.
First chemo (Cisplatin)and first radiation on 8-3-06. Chemo every Thursday and radiation every day for 6 weeks, then 4 weeks off and another 4 months of chemo (not sure what kind yet). I am still limited sc, so that is good. I will beat this!
August 2007-routine 3 month CT scan, bones in pelvic area lit up on PET. Now extensive sc - will start chemo 9-17-07. Having Topotecan for 5 days, 3 weeks off for 4 months then will do another PET. Here we go again!
1-20-08 Update: Insurance denied a PET scan so had bone scan and CT. They showed some growth and a new spot on a rib. Had a PICC line put in on 1-14 (tried for a port in my arm - didn't work). Veins are junk. Started Taxol on 1-15. Will have once a week for 4 months. May have to pay for PET out of my own pocket. Picture of son Sean, 24, me and husband, Gregg with our race car.

Deb,
I loved this post. YOu described your extreme anxiety with such humor and realness- Ginny's right, you write so well.

As for AC/DC songs....how about
"Take a Drink on ME" to celebrate the good results?

Thank you for sharing this with us.
Love,
K

_________________
- Katie Brown, Co-Founder and Director of LCSC-

15 yr cancer survivor.

"Any of us who have experienced the cancer journey- and survived it-
have an obligation to make the path clearer and aid those that come after us."
- Lance Armstrong

In memory of Jessee Dewey, SCLC
December 29, 1938 - September 6, 2003
Lisa Dewey- Jan. 22, 2007
my parents are together in heaven


facebook www.facebook.com/lungevity

Oh Debi... not to laugh, but I just went thru the same thing (and I haven't even been diagnosed, yet... ) I, too, become COMPLETELY neurotic at scan time. I was also certain that there had been major changes in my last scan. Silly tech, should have known better - they gave me my scan, but no report. So, of course, I had to try my hand at reading them...I was sure I had found two new nodules - one in each lung! Upon further investigation, I guess they must have been nipples, as my scan report showed no significant interval changes - thankfully, I didn't rush to Pulmo. with my "finding" right away

Anyway, LOVED your story! Thanks for sharing, and letting us ALL know that "Imaging Neurosis" is a common phenomena (sp.)

Glad to hear all is clear!

~ Stacey

You are definitely not "really neurotic," Debi! I'd say more likely "really normal." Glad you forgot about the pen. It didn't matter anyway.

_________________
My Dad died of NSCLC in 1998. (Miss you, Pop.) Pic taken from my kitchen window at sunrise. I'm a clinical nurse specialist, researcher and educator. I practice nursing in medical intensive care. Symptoms and illness perception in lung cancer are my areas of research. Finished my PhD in nursing in 2004; some of the wonderful people on this site helped me - thanks!

Debi..

You are too much! I am still rolling! That was so funny and very real! Publish it somewhere. It is absolutely perfect. It needs publishing.

Your tech was amazing. (I think she shoplifted the pen.)

Cindi o'h

_________________
Cindi NSCLC lllB Dx:11/02 at age 47
squamous cell carcinoma. T4N3M0 poorly differentiated (grade 3)

Aggressive, Curative Treatment:
Chemo (carboplatin/taxol weekly) and 8 weeks of daily radiation.
then taxotere 3 cycles
tx ended 6/03

NED every 3 months
Moderate Asthma
11/03 heart attack and stent
transient pleural/pericardial effusions
hypothyroidism
significant radiation pneumonitis
1/05 pneumonia
interstitial fibrosis
9/05 pleurodesis (talc procedure)VATS procedure to resolve chylothorax and effusions. Now loculated effusions.
ll/05 PET/CT clear/NED
10/06 CT Clear again!
12/06 heart/lung troubles
Biggest problem remains shortness of breath. (SOB)


Celebrating FOUR years since diagnosis: 11/02
2 brothers lost to lung Ca. Dick died at 37 from nsclc. John died at 42 from sclc

Debi; I agree..if u arent already a writer, you could be...very well written.

Yea, the dang anxiety thing, I know the feelin. I got a CT soon. In MRI, i also need the towel over my eyes...like Linus, heh. When I leave the machine, I steal a glance at the contol room monitor...course I always see a big spot "lit up"...always scares h... out of me, till doc reports. (I dont get to see the scans, only the docs do here.) I guess the "spot" is just something like the spine or something which is normally there..? Dunno if Id take the cell phone in the MRI...you might play h... trying to catch up with it when they turn those magnets on.. BTW, my request for "easy listening" music ended up being raunchy country drawling stuff. heh. Hope thats the only wrong button she pushed.

I had one serious dizzy spell, bout 2-3 months after surgery...saw the road go away to the left and found myself in the middle of someones yard, inspecting the lawn till it finally subsided. Weird. The surgeons nurse guessed it was probly a temp. drop in blood pressure..? Dunno what caused it, but hope it dont happen again . So I hope u get that under control, if they figure it out. Bad enuff we got things that "go pop" huh? Good luck...Rich B.

_________________
06/28...Broncoscopy Mon....suspicious mass in left lung per ct scan...wish me luck...much anxiety, and yes, fear.
06/30...Needle biopsy, due to bronch. being inconclusive
07/02...dx is adenocarcinmoma...NSCLC

07/15...Surgery, entire left lung removed, No lymph node involvement or metasis yet discovered, so...hopeful prognosis
07/21 Home after sufficient recovery in hosp., slow recuperation, awaiting appt. with oncologist to determine if any additional treatment, screening, etc..
08/17/04 Oncologist appt....recomends more scans, CT bone, MRI, Pet etc. Also recomends one round of chemo...

9/17/o4 Good news, scans are all clear..NO evidence of disease detected...hopeful it remains that way. Remaining cautious tho, one more MRI to go and some adjuvant chemo....so waiting, healing, still doing med. appts for awhile. Then regular xrays ea. 3 mos.

Whoops...detour, the MRI/spine turned up a small lesion of unknown type. Off to the orthopedic specs. to investigate, get options. Chemo delayed briefly pending opinion from ortho guys.

Opinion is "not cancer" on spine...apparently just my arthritic joints...so, becomes a pain management issue..appt. made. On to adjuvant chemo on Monday. Finally.

Mon./10/27...o4 started adjuvant chemo finally; Taxotere first , then Cisplatin, I think...fatigued knocked me flat the 3rd day after...dozing, trying to catch my breath every time I move...sigh
Fri...emergency room, oxygen...Pneumonia-like inflammation of remaining lung...week of IV antibios and steroids...finally recovering, but...chemo ceased...end of that notion. Bad react. to taxotere. Now on to just screening scans for future. Continuing pain management consultations for back and surg. pain.

10/10/05 CT and PET scans; NED, clear, normal..1yr. out from treatment...cool.

2 yr. scans clear...wheww! SOB and easily fatigued tho, continues. Perm. I guess.

*Disclaimer: I am only really neurotic when I get odd pains or at test time. I only share this with you all, so that you will know that your not alone if you become temporarily insane, and that I know that I'm not alone when I get wacky. I actually look perfectly sane when seen on the street .
(From Debi's post.) Haaa..ur too much.

_________________
06/28...Broncoscopy Mon....suspicious mass in left lung per ct scan...wish me luck...much anxiety, and yes, fear.
06/30...Needle biopsy, due to bronch. being inconclusive
07/02...dx is adenocarcinmoma...NSCLC

07/15...Surgery, entire left lung removed, No lymph node involvement or metasis yet discovered, so...hopeful prognosis
07/21 Home after sufficient recovery in hosp., slow recuperation, awaiting appt. with oncologist to determine if any additional treatment, screening, etc..
08/17/04 Oncologist appt....recomends more scans, CT bone, MRI, Pet etc. Also recomends one round of chemo...

9/17/o4 Good news, scans are all clear..NO evidence of disease detected...hopeful it remains that way. Remaining cautious tho, one more MRI to go and some adjuvant chemo....so waiting, healing, still doing med. appts for awhile. Then regular xrays ea. 3 mos.

Whoops...detour, the MRI/spine turned up a small lesion of unknown type. Off to the orthopedic specs. to investigate, get options. Chemo delayed briefly pending opinion from ortho guys.

Opinion is "not cancer" on spine...apparently just my arthritic joints...so, becomes a pain management issue..appt. made. On to adjuvant chemo on Monday. Finally.

Mon./10/27...o4 started adjuvant chemo finally; Taxotere first , then Cisplatin, I think...fatigued knocked me flat the 3rd day after...dozing, trying to catch my breath every time I move...sigh
Fri...emergency room, oxygen...Pneumonia-like inflammation of remaining lung...week of IV antibios and steroids...finally recovering, but...chemo ceased...end of that notion. Bad react. to taxotere. Now on to just screening scans for future. Continuing pain management consultations for back and surg. pain.

10/10/05 CT and PET scans; NED, clear, normal..1yr. out from treatment...cool.

2 yr. scans clear...wheww! SOB and easily fatigued tho, continues. Perm. I guess.

Debi,
Glad the MRI is clean,
you broke me down.

Very well written, nearly hearing the too
loud music still.
J.C.

_________________
Husband *Mike*
dx'd nsclc Stage IIIA, inoperable, May 21st 2002
On October 13th 2003, he died at home as he
wanted, very peacefully during his sleep.
I miss you so much Mike.
Jackie

Debi, Debi, Debi.....
Trying to pretend that you are only insane some of the time when we all know this just isn't so.

Glad the MRI was normal. Glad you are doing okay.

_________________
Fay A. age 44 at diagnosis
NSCLC Adeno W/ BAC Features
Rt. Lung Upper and lower lobe segmentectomies 6-99, 4-00
Rt anterior thoracoscopy 11-00
Iressa 5-02 to 1-03
Pneumonectomy Rt. Lung and all Nodes right side of chest 5-03
Carbo-Taxotere 9/03-12/03
Recurrent Disease on Rt. Bronchial Stump/Subcarinal Node (missed one!)paratrachea 1/04
33 Radiation Treatments/Daily Amifostine Injections 8/2004
Mets to Right Axilla 8/04
12-26-04 Tarceva
1-17-05 Scans show NERD!
4-05 Scans show NERD!
6-22-05 Clear Chest Xray
7-22-05 1.7cm Tumor Left Lung, possible 1.5cm to right shoulder.
7-27-05 3mm to 1mm CT shows 1.7 cm lesion confirmed. Bummer.
8-17-05 Botched FNAB with bleeding into both lobes of left lung and botched insertion of 1st chest tube requiring insertion of second chest tube, and pathology inconclusive as to malignant or not.
9-7-05 Left Lung Wedge Resection to remove tumor (cancerous after all and a different type of Adenocarcinoma than previous tumors in right lung. Surgeon used standard thoracotomy incision on left side. One broken rib (he says greenstick fracture). More pain with this surgery than any of the previous 3 big thoracotomies on the right side. Still in a significant amount of pain as of 9-27-05.
12-1-05 Coughing spell breaks left rib; 12-9-05 CT scan shows mass in left pleura; 1-3-06 FNAB of Pleural mass shows Malignant. Left side ribs continue to break. 1-6-06 start Gemzar alone. Add in Tarceva as soon as stomach can tolerate it.
-----------------------
Lost my Mother, My Maternal Aunt and Uncles, Maternal Great Aunts, numerous cousins to Adenocarcinoma with BAC or BAC only Lung Cancers. I am the third "...biopsy proven..." generation with Adeno with BAC. Not all family members afflicted with this disease were smokers or exposed to tobacco smoke. Paternal side of family remarkable for Pancreatic Cancer or Chronic and acute Pancreatitis as cause of death in everyone. BAC is also primary in the Pancreas, the only other organ besides Lung known to be a primary locus for Bronchioloalveolar Carcinoma (BAC).
Researchers are looking into BAC as a possible bone cancer! Exciting news as I have had removal of Giant Cell Bone Tumors off and on since I was a young child. We were always told that my bone tumors were considered 'benign' because they were a very slow growing tumor and could take 20 or more years before they spread to other areas. I am paying special attention to the work out of the University of Ohio in Cleveland and hope that my children will keep up with the work being done there when I am gone. Their lives may depend upon what those folks learn over the next few years. These are the same researchers who found the location of the defective genes involved in the development of Lung Cancer in Non Smokers which are also the same genes involved in the development of some forms of Polycystic Kidney Disease, which I also have.
------------------------
Some other health issues I face:
Polycystic Kidney Disease with Multiple Organ Involvement; Benign Meningioma, Benign Left Adrenal Tumor, Giant Cell Tumors of the tendons and bone, Bilateral Mastectomies for pre-malignant Breast Tumors, many other benign tumors and cysts in the skin, veins, muscles and other organs; Sjogren's Syndrome, Crohn's-IBD with Hiatal Hernia and GERD, Rheumatoid Arthritis,
Ehlers-Danlos type connective tissue disorder, Degenerative Disc Disease of Spine. Heart Murmur.
Praying for One Smart Cookie and an Armadillo!

Are we twins????????? I would have had the EXACT same reaction as you!!!!!!! And I also try to buddy up with them We are way too much alike. I bet there are others just as CRAZY as us who are still in the closet

_________________
[size=84]Mom diagnosed 11/03; age 58; NSCLC IIIA
Carboplatin/Gemzar
3/4/04--lobectomy
5/04--completed radiation
5/05--coiling for brain anyerusm found on routine brain MRI
8/05--triple bypass
10/06--PET, brain MRI, CT clear
8/07--NED
Currently in remission/NED
2/12--Stage IV squamous cell, a new beast
4/9/12--My mom passed away

Dad diagnosed 9/06; age 65 (asymptomatic); adenocarcinoma with BAC features
9/06--Wedge resection of 1.4cm tumor
Lots of little nodules remain and a small thing on brain maybe
11/06--Stable
5/18/10--Dx with Macroglobenemia (indolent lymphoma) & nodule growth
6/10--IT'S BACK! Tarceva time
[/size]

OMG...give me that pen so I can plunge it into my ear and hopefully get that song out of my head.

I am glad your test was clear. Most likely you were hyperventilating from stress..take a Xanax and call me in the morning. Andrea, you take two.

_________________
Life is what happens to you while you're busy making other plans.
John Lennon

"Never, never, never give up." Winston Churchill

"I rang for ice, but this is ridiculous." -Madeline Talmadge-Astor, as she was being helped off the Titanic

"Losing love is like a window in your heart, everybody sees you're blown apart, everybody sees the wind blow". Paul Simon

Husband John has NSCLC-Vena Cava Syndrome Stage 3B, Dx 6/02
Carbo/Taxol,Radiation
Taxotere
Gemzar
Iressa started 3/03
10/03 Stable CT scan
1/04 CT Still stable.
3/04 PET Scan, Still stable.
7/04 Still stable
1/05 Still stable
1/30/05 Iressa discontinued Started Tarceva, still stable 7/05
1/06 Slight increase in tumor, stopping Tarceva.
1/27/06 Started Alimta
5/5/06 Avastin added to Alimta
6/14/06 Stable, continue w/ Avastin
1/29/07 Shrinkage! Continue w/ Avasin.
7/07- Something new on the CT scan, doing a bronc 7/25/07 to see what it is. 8/21/07 begins brachytherapy. Next treatment postponed until 9/6/7 due to an infection which is making him too ill for the procedure. 9/13/07 Diagnosed with Aspergillus. Has brachytherapy 9/20/07. Developed a pericardial effusion, 10/30/07 has a pericardial window to drain the fluid. Procedure goes well but he passes away 10/31/07 due to a pulmonary hemorrhage.
Pic is me and daughter Jillian aka The Jillinator.
Visit Walk the Walk:
www.michiganlungcancerwalk.org

Debi --

I hesitate to say that I "enjoyed" your post. As a sometimes "caregiver", I have read into people's looks many things which I later found out weren't there. I have tried to "buddy up" with doctors receptionists when the doctor isn't in... My list of "neuroses" are numerous having also had 2 children with potentially very serious diseases. I HEAR you. Thank you for putting these things into words and you did it so well. I so agree that you should submit that for publication. You're a good writer.

And oh, very glad your MRI was clean!!! Hope they find the cause for your dizziness and it's easily fixable or better yet, hope it goes away right NOW!

GAIL p-m

_________________
Dad dx. Stage 1 Lung Cancer -- Aug. 2000 -- lobectomy -- no other treatments; follow-up every 6 months with CT scan

Recurrance April 2003 -- Stage 4 with mets to bones (Adenocarcinoma with BAC features); Received 3 rounds of Carbo/Taxol --- very little change from chemo

Re-staged to Stage 3b-4 Sept. 2003

Received 35 radiation treatments; shrinkage of most spots; however, something "else" which wasn't there is now there and they're not sure what; another PET and CT in May

Aug. 2004 -- CT and PET -- STABLE; scans at 3 month intervals --- STABLE

May 2005 --- a new spot in the lung found when coughing up a bit of blood; spot showed on PET but not on CT; bronchoscopy confirmed recurrance but also seemed to stop the coughing up blood; oncologist decided to watch and wait

July 2005 -- coughing up blood again; put on Tarceva in late July

Aug. 2005-- many problems with Tarceva and it was discontinued; feeling better now

Spring 2006 -- rapid decline in weight though May 25 scan showed things essentially stable; feeling very weak, tired and unsteady on feet

Aug. 1, '06 - Dad passed away while fighting valiantly to the very end; he was still so strong physically and emotionally; an amazing 82 year old man; I miss him so much

**** Picture is of myself, Dad, and sister celebrating Dad's 80th birthday in Feb. 2004

Oh test time, so very very stressful. I too was convinced I had mets to my brain because of dizzyness and blurred vision. After they scanned me, I went to talk to the doc for the results they sent me back because they "saw" something funny. Needless to say I had to get a second scan and found out the "funny" spot was a reflection from a root canal in my mouth!!!

Needless to say we never really figured out the dizzyness except that it may have been stress related. It went away about a week after the mri.

Here's to hoping that the dizzyness subsides, and thanks for the post - you are definetly not alone!

Wendy

_________________
3/2004 Stage 3a-adeno @ 39yrs
3/2004 Left Lung removed, 21 nodes +, paralyzed left vocal cord
3/2006 - New Mets - Spine T12 & Right ischium bone
1/2008 - New Met Spine t10, Possible thyroid

CHEMO
May-Jun 2004 Cisplatin/VP16, 6 days straight every 3 wks, 3 cycles
Jul-Aug 2004 Taxotere 1X every 3 wks, 3 cycles
Sep-April 05 Iressa trial daily
Jan 06-Jan 07 Avastin ev 3 weeks, tarceva daily, zometa ev 6 weeks
Feb 07-Jan 08 Tarceva daily
Jan 08-Present Avastin ev 3 wks + Tarceva Daily

Radiation May-Jun 04 chest 28 days
Feb 06 Spot radiation X 10 days to spine t12 and pelvis (ischium bone)

Debi

Thanks for putting into words what we all feel, but some of us (namely me) can't come up with the wording as well as you did.
Everyone who says it needs published is right!

Kathy

_________________
Kathy, 56
7/16/2004 Vats lower left lobectomy
dx 1A T1N0M0 NSCLC
7/31 Returned to hospital with plural effusion
and empyema, chest tube.
Four chemo treatments completed Dec 2004
carbo/taxol
Ned as of Dec 15 2004
Still NED as of mid March 2005
Still NED as of September 15 2005
NED as of mid April 2006

Blessed to say still NED as of
October 2006
Still blessed to have NED on my 3 year anniversary...July, 2007
YEAH.....July, 2008 4 years NED
Thank you God!

Lost my wonderful father to lc 9/27/2000

Hi Debi,

That was so entertaining. You really are a good writer. Your sense of humor had me in stitiches.

It is incredible how the human mind can blow little things out of proportion to become big things that you know for a fact is bad news during test time.

I did symphasize with what you went through, but was estastic with your outcome.

I did print out your post to show Joel, he deserves a good chuckle... AC/DC so funny

Congratulations on a great MRI...


Maryanne

_________________
"Life is not measured by the number of breaths we take...but by the moments that takes our breath away"
[size=75]
Husband Joel, 58 dx 10/18/04 Smoker since age 15 stopped when diagnosed
Adenocarcinoma- stage 1B
Lobectomy Left upper lobe on 12/15/04
biopsy on lymph nodes - negative NED
1/13/04 Oncologist appt.to see about preventive Chemo.
Cancelled due to chronic fatigue
1/12 fentynal patch for pain
1/14 discontinued Fentynal patch bad reaction
1/15 Blood test showed high T levels
2/1 Endoconrinologist visit diagnosed over-active thyroid
2/8/05 took Radioactive Iodine to kill thyroid
2/16/05 appetite back, fatigue leaving
2/24/05 visit with Pulmonary Doc. Breathing at 96% capacity,
Next visit 3 mos.
3/9/05 Endocrinologist visit -T levels went from 25 down to 5.
3/30 started Synthoid(thyroid med)
3/31 Oncologist. appt. CT results NED...
4/14 starting adjunctive Chemo (carbo/taxol) 4 treatments
3 weeks apart.
6/15/05 Joel finished chemo, chest X-ray clear, Next CT in August
9/01/05 1st CT since Chemo.. NED
11/17/05 CT - small nodule found 4 or 5 mil. in his good lung
1/10/06 CT - nodule Stable
7/2006 CT/ Nodule stable
10/2006 CT Nodule seem to have grown from 4 to 7 mil.
10/2006 Pet- showed some uptake
10/2006- operation- wedge section right upper lobe turned out to be cancerous 2 nodules next to each other. 2 different types of cancer. 1 squamous cell carcinoma (new primary)2- adenocarcinoma-(not sure if new primary or metastasis)
May be restaged to IIIB
11/07/2006 will start 4 rounds of taxotere. 3 weeks apart. Will take Decadron before, day of and day after. Will get a shot of Leunesta the day after. Here we go again.. Joel's attitude.... great as usual
Horrible reaction to the neulasta shots. One night(New Years eve) went to ER. Spent 3 days in hosptal.
Feb 2007 finished chemo.
March 2007 had his CT .. as expected right now all is clear.
June 2007 NED!!!
Sept 07- CT- small nodule 3.5 mm
Going to do another CT in 6 weeks.
October 07- CT done, results STABLE...YEA
Jan. 2008... STABLE!!!
April 2008 little growth but still called stable
July 17 208 nodule doubled in size to 9mm. Needs Pet Scan, tests, hopefully cyberknife...
July 29 met with his surgeon... said Cyberknife is the way to go.
August 1- Cyberknife visit... Joel is a canidate, its a go...Happy B-day Joel...
Sept 22, 2008 finshed up the last of 3 cyberknife procedures
Nov. had CT scan
Nov. 9th results of CT from Cyberknife..... Tumor completely gone... right now NED!!!
Feb. 09- Pet/CT results. . . NEd!!!
May 09 Pet/CT results. . . NED!!!
Sept. 09 Pet/CT results.....NED!!
Jan. 2010--- NED!! Pet now will be every 6 months.
June 8,2010 Pet scan on our Anniversary... hope thats a good sign..
June 17, NED!!!
Dec. 30,2010... NED!!!
June 20,2011... NED!!!
March 2012....NED!!!

pic of Joel and our daughter Nicole at walk NOV. 07

[img]http://www.freewebs.com/beansprouts2005/nik_and_dad_1LC_walk.jpg[/img]

http://www.babababies.com

Oh Debi,
Loved it.
I could really identify with that.
I'm so glad the scan came out good!!!!!

Barb

_________________
Picture is of me and my 5 WONDERFUL sons.
June 29,03: Dx'd with Melanoma.
Aug.8,03:Clarks level IV Melanoma removed from heel. No Mets.
June 26,04: Chest Xray. Found large mass on lower lobe of right lung. CT and PET confirmed cancer.
Aug/3/04: Surgeon dx'd either mets melanoma or stage 1 primary lung cancer.
Aug/5/04:Lobectomy of lower right lobe. Tumor = 6.0X5.0X3.5 cm primary NSCLC, carcinoma with features of squamous differentiation.Found Mets to lymph node, now stage IIIA.
Sept.04: began 33 radiation treatments and 6 weekly Taxol and Carboplatin chemo. Followed by 2 larger doses of Taxol and Carboplatin, 4 weeks apart.
Waiting for February 9th to have scans and MRI of brain.
Feb. 9,05:Ct and MRI done. Doc says all is stable!
May 4,05:CT.done Still NED
Praying!!!!

Ahhhh, Deb....you are simply human, darlin'!! Wonderfully so, I might add. What a great story...but best of all are the results of the MRI....CLEAN!!

Reading your tale, I substituted Archie Bell and the Drell's annoyingly repetitive "Do the Tighten Up" as the song playing over and over and over...which, in my case, would have resulted in a 135 lb., nearly 60 y/o woman SINGLEHANDEDLY dismantling an MRI machine!

More than likely, were you not in a semi-neurotic state, you'd have realized the MRI tech was so nice to you because YOU were so nice (and probably entertaining too!) to her!

Glad you're okay...and that you can retrospectively share such a great story with us, seeing the humor in your own neurosis! You're a pip, Debi! So glad you're here.

_________________
Addie
Courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day saying,
"I will try again tomorrow." mary anne rademacher

DX 5/10/04 -SCLC-limited left lung 1.5cm "patchy infiltrate" with mets to mediastinal lymph nodes
5/13 - 21: Bone marrow test, bone scan, brain MRI and abdominal CT....all clean.
Confirmed limited stage.
5/28 - 9/15: 6 cycles of chemo - carboplatin/etoposide
6/24 - radiation X31 begins, daily Amifostine shots.
7/21 - rescan, cone down on radiation, some shrinkage noted...hooray!!
8/11 - radiation finished! Mild esophagitis, despite Amifostine.
10/4 - CT of chest/abdomen/pelvis
10/5 - brain MRI
10/6 - Results of tests: NED!! And empty headed!
11/1 - 11/17: PCI. Hair today, gone tomorrow again...but otherwise no problems.
Jan 3, 2005: CT scan chest/abdomen/pelvis - results: Still NED!
Mid Jan. - Feb: stomach issues, nausea
2/11/05: Cancer is back in liver, pancreas.
New chemo - Topotecan:
1st cycle: 2/21 - 2/24
2nd cycle: 3/14 - 3/17
3rd cycle: 4/4 - 4/7
4/11 - Chest/abd. scan - 50% shrinkage!! Pancreas "normal"!!
4th cycle: 4/25 - 4/28
Transfusion: 5/6 & 5/7
Chemo cut from 4 days to 3
5th cycle: 5/16 - 5/18
6th cycle: 6/6 - 6/8
CT of chest/abdomen/pelvis - 6/14/05: Pancreas, spleen, biliary tree appear "normal". 4 liver tumors perhaps slightly smaller. Results: essentially "stable". Will continue with Topotecan 3X every 21 days.
7th cycle: 6/27 - 6/29
8th cycle: 7/18 - 7/20
9th cycle: 8/8 - 8/10
Brain MRI - 8/11: multiple mets
CT chest/ab/pelvis - 8/15: still stable!!
Brain radiation:8/22 - 9/7
10th cycle chemo - 8/29 - 8/30 cut to two days to avoid counts tanking.
11th cycle: 9/19 - 9/21
12th cycle: 10/10 - 10/12
Brain MRI: 10/11- all clear but for two tumors, both greatly reduced.
10/20: Chest/abd./pelv. CT scan - liver tumors growing again.
10/31: Switching to Taxotere
11/9: Hospitalized. Two masses-in cervical & lumbar spine. Radiation
11/23:Aphasia...seizure? MRI...brain tumors are back. Started on Temodar.

Deb,
Shared sympathy with your awful experience.
I close my eyes and won't open them.
I say hail marys back to back the entire time.
I have actually fallen asleep in the darned thing.

However the time leading UP TO the scan is another story... like you I run through all these appointments by myself. I have been known to be anxious.... the more anxious I get the more I drive myself deliberately to distraction with a good novel or rented movie. A very cultivated give a darn attitude, cause otherwise I'd be a wreck...

God bless you, darlin', for expressing so beautifully what so many of us go through. I'm really glad the scans were good. I hope the dizziness stops. Did you know you can get a virus in your inner/middle ear that causes dizziness, called "labrynthitis"? My dad had it very badly once. A strange thing that comes and goes, with no rhyme or reason, and very little can be done about it. Like a head cold, it runs its course and disappears. Stranger than fiction.

Love ya, kiddo!
XOXOXOX
MaryAnn

_________________
dx 4/00 age 44, pancoast nsclc IIIa, 14 cm x 9 cm. 6-7/00, chemo 6 daysx2 (cisplatin/VP-16), 25 days radiation 6-7/00, removal of left upper lobe, 13# tumor, (loss of 5 ribs) w/ rebuilt goretex chest wall 8/00, chemo x2 9-10/00;
Clean Brain, neck, chest, ab, pelvic scans 2/04 Some pleural effusion along prosthetic chest wall. Keep an optimistic eye on it all...
April 2004, 4 year survivor w/NED...
8/11/2004 Scans clear, NED, pleural effusion stable and small. 4 year 4 month survivor
Avatar "HAPPY" , a gift from Rick Brown, is as close as I can come right now to owning a dog again. 9/24/2007 Scans NED, = 8 year survivor !!

Debbie,

I so understand how you feel. I am constantly looking at the techs and trying to read their body language. I was once so convinced that it had spread to my spine that I spent hours at the office running my fingers up and down my back trying to isolate the location. When the tests came back negative my Dr. just laughed and told me to quit playing chiropractor.

My next CT scan is scheduled for June 8th. I'm trying not to freak out this time. So far so good. We'll see how it goes.

Kevin

_________________
Dx: 4/04 Stage IIA
Turned 40 on 5/30/04
Upper Lobe Rt. Lung Surgically Removed 4/30/04
Cisplatin & Gemsar 6-9/04 (4 rounds)
12/8/04 First Scan Clear NED
2/1/05 Brain MRI clear
3/3/05 PET shows an active lymph node. Biopsy scheduled for 3/10/05 Hoping for the best
Mediastinoscopy on 3/10/05. All tissued biopsied is negative for cancer. Still NED!
6/8/05 Spoke too soon. Pet scan shows that lymph node is still hot.
8/19/05 Its back. Biopsy confirms lymph node is cancer.
8/23/05 Thoracotomy No. 2. Surgeon removes all lympn nodes in mediastinum. All negative for cancer except the one showing up on Pet.
10-11/05 Seven weeks of Taxotere and Radiation
1/31/06 CT - All Clear
2/26/06 Brain MRI - All Clear

Picture taken on post-surgery trip with the loves of my life: My wife Christine and son Zachary

One of my friends had a breast biopsy yest and she freaked out b/c the dr asked her "how old are your kids". She took that as a bad sign. Results today were negative, but I thought of this post when she told me that yesterday

_________________
[size=84]Mom diagnosed 11/03; age 58; NSCLC IIIA
Carboplatin/Gemzar
3/4/04--lobectomy
5/04--completed radiation
5/05--coiling for brain anyerusm found on routine brain MRI
8/05--triple bypass
10/06--PET, brain MRI, CT clear
8/07--NED
Currently in remission/NED
2/12--Stage IV squamous cell, a new beast
4/9/12--My mom passed away

Dad diagnosed 9/06; age 65 (asymptomatic); adenocarcinoma with BAC features
9/06--Wedge resection of 1.4cm tumor
Lots of little nodules remain and a small thing on brain maybe
11/06--Stable
5/18/10--Dx with Macroglobenemia (indolent lymphoma) & nodule growth
6/10--IT'S BACK! Tarceva time
[/size]

Hi Debi,

That was a GREAT story! Thanks for sharing it with us. I'm still waiting for somebody to come up with a cure for the anxiety at scan time. You did a terrific job of remembering your thought processes and putting it on paper. It sure put into words what a terrifying time it is getting scans and waiting for the results.

Love and hugs,
Peggy

_________________
_________________
--8/2003: 55 yr old husb of 37 yrs dx 8/03 w/7cm tumor, left lung, w/8 brain mets, Stage IV NSCLC. Nonsmoker for 30 yrs
--8/03 WBR (whole brain radiation) - 14 treatments
--9/03 Lung rad - 24 treatments
--9/03 Taxotere/Carbo, wkly
--Severe reaction to Taxotere 3rd wk
--11/03 Novalis (stereotactic rad to rem 6 brain tumors)
--12/03-2/04 Gemzar/Navelbine
--3/04 Lung: some shrinkage, Brain: 4 mets remain, largest 1.5 cm
--4/04 Severe shoulder pain-14 radiation treatments
--6/04 Progression of disease, 4 brain mets stable, more spread to bones, liver (small) and pericardium. Iressa & Zometa started.
--7/04 Slight inc pericardial effusion, slight shrinkage liver met, pleural effusion.
--9/04 PET and CT Scans all stable
--12/13/04 radiation fibrosis & extensive bony lesions. Brain MRI-4 mets remain - stable.
--3/05 Small growth in 2 brain tumors, pericardial effusion now "large". Significant progression to bones. Switching to Tarceva.
--5/27/05 Tarceva not working. Two new 2 cm. liver mets, extensive progression in bones. Pericardial effusion stable.
--6/1/05 Increased pain in hip
--6/10/05 Start Alimta, once every 3 weeks
--6/9/05 Start radiation to left hip 14 treatments; it worked!
--6/16/05 Brain mets nearly doubled in size, significant edema/swelling
--6/21/05 began 8 mg. Decadron daily for brain edema/swelling
--7/11/05 Novalis (SRS) to 5 brain mets (largest 4.0 cm.)
--7/22/05 3rd Alimta infusion – started SOB after 2nd infusion
--8/1/05 hospitalized for tests for severe SOB and focal seizures
--8/3/05 CT says severe alveolitis (destruction of lung cells) -VATS procedure done to biopsy to figure out what is causing. Both lungs are cancer free, but they say only three things could be causing the alveolitis: infection, cancer or chemo
--8/4/05 Doesn’t look good. Alveola cells are rapidly dying
--8/5/05 Biopsy says chemo. (8/8/05 – 2nd opinion biopsy result confirm chemo caused the alveolitis)

8/5/2005 The love of my life is living with the Lord and soaring on his motorcyle with the cool winds of heaven in his face

And we know that ALL things work together for good to those who love God, to those who are the called according to His purpose. Romans 8:28
The Message translation: That's why we can be so sure that every detail in our lives of love for God is worked into something good. Romans 8:28
He said ALL things, not SOME things.

Debi, I know you must have in hell, I am so sorry you had to go through it. I cannot imagine. Actually that music was what I listened to in High School. You are a very good, discriptive writer and I agree you should submit this for publication. Keep your chin up and tell your body to put ALL your cancer cells on the Highway to Hell!!!!!

David C

_________________
**40 yr old. Dx'd 3/21/03 SCLC-Limited
**Chemo. started 3/27/03 for 6 rounds-Carbo, VP-16.
**30 rounds of Radiation.
**PCI completed 9/24/03-CT shows scar tissue?
**CT Scan 1/19/04-ALL CLEAR (except scar tissue).
**PET Scan 5/3/2004 - ALL CLEAR - scar tissue going away!!!
**6/4/04 Port-a-cath removed.
**7/1/04bone biopsy to right eyebrow-docs all suspect sinus and bone infection.
**7/7/04 biopsy results confirm SCLC Metastisis in sinus pressing into the skull.
**Port-a-cath was reinstalled 7/12/04.
**Started chemo again 7/14/2004. Chemo through end of year, Cisplatin and CPT-11.
**Tumor getting so big it is starting to close my eye. Radiation started 8/30/04 for 30 rounds.
**9/8/04 chest and head CT scan shows NED in lungs-sinus met still there.
**11/18/04 Pericardial effusion-over 1 quart drained
**12/2/04 Brain MRI, tumor appears to be gone, brain swelling and fluid persists
**12/7/04 MRI Brain-12/17/04 CT head and chest
**1/7/05 possible brain mets-will see neurosurgeon 1/17/05
Still might be Brain Mets-will wait another 6 weeks, rescan and rethink options.
**2/18/05 results from CT and PET Scans show mets to surface of liver , lower spine and hip bones.
**New Chemo regime--Topotecan once a week.
**3/26 MRI-New 6mm spot showing on left side of brain.
**Unable to have chemo for 4 weeks due to low blood counts.
**new chemo regime-Topotecan 5 days in a row starting 3/28 then 2 weeks off then another 5 days in a row with CT and Bone Scans in between.
** Unable to tolerate side effects from the Topotecan.
**Head mets appear to have grown and are showing definitely in the brain. Now looking into Gamma Knife.

June 15, 2005 at 6:10 pm, left this world to live in the Kingdom of Heaven, where there is no cancer and no pain.


***No problems, only solutions***

*** God cannot answer the prayers He does not hear!!!****

Wow..all you guys are so terrific, thank you for all the responses. I wish that I had the time so I could respond to each of you, so many of you made me laugh or struck a chord with your replies.. My job is so crazy right now that I have time only now and then to post anything...

My dizzy/faint/vision spells have left for the most part. The last word I got from my regular doctor was when I spoke to his nurse and she told me..."Ummm, Dr. "Smith" said to tell you he's sorry but he has no idea why you are dizzy, I'm just so sorry we can't help you !" Anyway, I am on both a diaretic, and high blood pressure pills and I'm thinking both of them were too high dose. I researched it online, spoke to the pharmacist and cut the dosage somewhat (don't try this at home! ) and have been doing fine( I monitor my blood pressure at Walmart ) .I'm just hoping I don't have to perform surgery on myself anytime soon because the sight of my own blood makes me squeamish!!

Anyway, thank you for your answers, and your empathy. I think about you all, every day and always wish you well...

_________________
Debi
50 years old
Stage 1a-nsclc,1.3 centimeter, adenocarcinoma
Surgery June 16, 2003-upper & mid lobe removed
17 lymph nodes removed - all clear
No chemo or radiation

Debi: I enjoyed your post. I know you were having a hard time during the procecure, but the "Highway to Hell" bit was really funny. Kurt Vonnegut Jr ha a way of writing about sad things and is funny at the same time. I could never stand the 1980s era of screamy mimi rock and roll. I am glad you got through it ok.

Don M

_________________
10-31-03 CT. My profile was getting too long so I moved it to my story.

http://www.lungevity.org/l_community/vi ... hp?t=37417

OH MY GOD ! ! ! ! !

Having said that, I'm glad to hear your okay???!!!???!!!??? Or are you?????

So, as for the dizziness, what else could it be? I guess I can think of a few things! Allergies, ummmmm
okay, I can only think of one thing right now!

(((((((((DEB))))))))

_________________
Warm and Gentle Hugs,
Connie B
Date Dx.d, 7/21/1995, Age 43, Adenocarcinoma, Stage IIIB, had 3.4cm tumor and three cancerous lymph nodes.
7/25/1995 had Left Lung Removed along with several lymph nodes.
9/9/95 Started Chemo (VP-16/Cisplatin), & Radiation (36 treatments). Cancer Free.
8/11/2003 CT Scan found 4mm Nodule Right Upper Lung. Did PET scan & Nodule Lite up. Also found a Tumor in my Left Atrium (Heart)
8/21/03 Open Heart Sugery for Myxoma Tumor in Left Atrium. During heart surgery (3) surgeons checked 4mm nodule & agreed it did not appear to be cancerous.
11/2004-CT & PET scan, nodule still there 6mm will watch.
4/2005-CT, Nodule still there and has grown to 8mm will do another CT in 9/2005. Waiting & watching nodule.
9/2005 CT Nodule has shrunk to 5mm. Doctor's feel nodule could be scar tissue.
2/2006 Having Shortness of Breath problems.
4/2006 CT, nodule 5mm No Change.
11/2006 CT scan no change in Nodule.
4/26/07 Results of CT scan shows I have another Noudule. Now have two nodules, one is 6-7mm & the new one is about 3mm.
9/2007 CT shows 3 nodules all mm in size. First 2 have no change in them. New one is very small. Repeat CT in 6 months.
12/11/07 Still NED
5/7/08 CT (right lung) (nodules watch) two new nodules I now have 5 nodules. Will watch via CT scans.
10/08 CT Scan showed 1 nodule 6mm has grown to 1.2cm.
5/22/09 CT Scan (awaiting results)
7/4/09 PET Scan (3 nodules in left lung are now 1.4c.m in sizes.
8/13/09 Did Bronhcoscopy
8/18/09 NOT Cancer, no cancer found.
Next PET Scan Oct 2009.

READ MY STORY @ http://www.lungevity.org/l_community/vi ... hp?t=13224

Lost my Father age 56(1970), Mother age 66 (1987), and Sister age 43 (1988) all to Lung Cancer
AVATAR is in Iowa @ the Presidential Cancer Forum

Debi, you are too funny, and I think it's unanimous that you should submit this for publication. And don't be surprised if recruiters start calling for the next opening at the local hospital. I agree you should steer away from surgery, though. Glad you're feeling better.
BeckyCW
P.S. I agree with David -- USE that AC/DC thing to send any cells that are even thinking of cancer on that highway to hell.

_________________
David C's big sister

Photo: with David about 2 months after diagnosis. Went to heaven June 15, 2005.

How timely that I should read your post (a little late). Next Friday I go for my 6 month check complete with MRI/CT and the rest of the works.I'm 3.5 years from dx and am still getting the wobblies about the tests........by this time next week my husband will be living with a raving maniac who will be ticked off if he doesn't ask after my day but will be equally steamed when he pokes his nose into my business by asking how my day went!
After all these test times he's wised up to the fact that he can't win and will mention a few weeks before that it must be almost time for my check up!! Bless his heart.
Were you at my last MRI? Except for the music you wrote my story.
I wonder if you ever get to be blase about these things, if so I sure hope I get there soon.
Thanks for starting off my day with a smile.
Geri

_________________
Diagnosed limited sclc Nov 2001
Clean PET scan May 2002
June 2004 Clear CT scan and brain MRI
Good for another 6 months!
Dec 2004, another clean bill of health. next check w/scans may be my last!
June 2005, another good check up, next appt in a year and then I'm finished!!!
Sept 2005, Pericardial effusion, window cut, no cancer found, thought to be viral in origin.
Back to 3 month check with oncolgist. but NED is still my best friend.
Jan 2006, everything still clean, this cancer officially cured. Next check up in a year. NED still in residence.
Jan 2007 clean bill of health again!
April 2007 dx breast cancer, surgery in May and June. Lymph node involvement
August 2007, started chemo, radiation will follow
Dec 2007 Chose no radiation, risks high for small benefit because of lc radiation. Chemo causing shortness of breath.
Jan 2008 Talc procedure done after needle aspiration doesn't work for long (2 days). Now using oxygen most of time.
Feb/Mar 2008 One month hospital stay due to congestive heart failure, low blood pressure and high heart rate. Permanant valve damage.
Mar/Aug 2008 fighting for breath and energy.
Aug 2008 started breast cancer adjunct therapy, life was miserable with side effects
Oct 2008 changed medications and life was even more miserable. This one lasted another month.
Dec 2008, feel better than in last 2 years, finally I am myself again and no bc treatments!
Jan 2009 PET shows no sign of malignancy ANYWHERE! Echocardiograms are now more regular for me than cancer screens.
I now take pills that conteract pills that conteract pills that conteract pills...............and on and on, but I'm still entertaining NED and life is good.
August 2009, CT still clear, back in 6 months for another CT. NED still lives here!
Dec 2009 More congestive heart failure looming.
Feb 2010 Heart block - code blue but eventually brought back, pace maker installed, new birthday Feb 6th - I came back!!!!
March 2010 Heart damaged beyond repair,only a couple of months left to live. Not a transplant candidate (2 cancers) so LVAD implanted. I'm still on the green side of the sod but now as the bionic woman and my future is still as long as it would have been before lc..........expiration date unknown (or long as I remember to change my batteries) !

Debo=
What an absolutely endearing post! Can we ALL relate, or what? So glad that the results were good and that you can no longer identify the pen! Love and hugs.

_________________
"Pain is temporary. Quitting lasts forever." Lance Armstrong

"Every moment is a breath-taking, transitory experience, never to be repeated again." - Don Juan Matus

Tiny
Age 58 at dx; lifelong non-smoker
12/01 dx NSCLC bronchoalveolar-type adenocarcinoma (BAC), Stage IIA
2/02 Lobectomy RLL; no chemo or rad
6/03 MRI = "empty"
3/05 Bone Scan = negative
2/08 CT = "No Evidence for Metastases or Recurrence"
Enjoyed 6+ years of NED
1/09 CT/PET:Recurrent disease: multiple new nodules in both lungs, mediastinal lymph nodes, and spot on liver.
2/3/09 Bone Scan: Degenerative arthritis (hooray!)
2/4/09 Started Tarceva
~~ picture: Temple of Poseidon, Greece 4/08 ~~

Hi Debi,
What a story and you made me feel like I was going through it with you. I have never had any of these tests but you sure made me feel like I did!! I am so happy everything was A OK and that you have the pen to prove it!! LOL
Hugs and love to you
God Bless,
Jane

_________________
My brother age 46 has been diagnoised with NSCLC that has spread to his liver (at least 30 spots) and has eaten through a bone in his back. He was diagnoised in January 2004.
Started Gemzar and Carboplaten in Jan 04
shrinkage of all tumors by 50%
May04 it stopped working and he is starting Taxotere5/5/04
Cea tumor marker has risen from 8 to 19 and he is having delusions. Brain scan done and it was clean. Blood work done and it was found to be low and he had 2 more units of blood today(5/4/04)
Cancer has spread to his heart 5/04 and he is hospitalized. The DR has said that the family needs to gather in the next week or two to pay Alan his final respects
6/2/04 Alan's hair has all fallen out and he likes it!! He is out of the hospital and is doing well somedays and worse on others. We have given it to God. We live on pins and needles but believe that his time is near, but we never give up HOPE!!


Alan left us to be with his creator on June 11th 2004. May he rest in Peace and tranquility.



This is a picture of my Brother Alan, Taken May 2004

My web site in Memory of Alan
http://www.freewebs.com/alanrussell/

Excellent story! Tell more! I'm counting on the fact that they'll all have a happy ending.

The "Highway to Hell" on the headphones while you're trapped in the MRI part would make such a scene on a sitcom. Obviously, you can laugh about it now. Thanks for sharing it with me.

_________________
Leslie (woman, just turned 50)
Married to wonderful husband of 15 years, Mark. No kids, but LOTS of cats and dogs!

"So if there is a purpose to the suffering that is cancer, I think it must be this: it’s meant to improve us. ~ Lance Armstrong

"The mountain remains unmoved at seeming defeat by the mist." ~ Rabindranath Tagore

1/8/05 dx with stage IV NSCLC (BAC) 3/4" tumor in R lung, small mets to bone. Zometa monthly.
Iressa from day one; about to start Tarceva.
6/2/05: CT scan shows no new growth or spreading, but no significant shrinkage of lung tumor. Still very small.
6/6/05: Started Tarceva! Keeping fingers crossed.
6/24/05 : Only Tarceva side-effect is a little worse acne/rash on face and chest.
6/30/05 - chest x-ray shows some shrinkage! Tarceva seems to be working!
7/29/05 - CT scan shows stable all around!
8/29/05 x-ray shows big improvement -Tarceva working!
10/5/05 CT scan shows improvement!
11/2/05 x-ray shows more improvement;original mass almost totally gone!
12/6/05- opps! Chest CT shows sign of small progression for the first time ever. And 8 brain mets discoverd. Starting radiation next week. My first real bump in the road. Oh well!


New picture is me sitting by a fountain in Rome Oct 2005!

Debi,
I have no idea how I missed this post when you first wrote it. You are a great descriptive writer and made me feel like I was reliving my last MRI. The only difference in how I felt is that they gave me no radio and no pen. The tech was very uninformative and distant. I like you tried hard to make eye contact and develop that "friend" status. I failed. The results were good, so all of that was for naught. That being said, I am sure I will go through the insanity again the next time scans are schduled.
Loved reading it. Thanks for taking the time to share in words what most of us feel but can't express.
Nina

_________________
[size=75]I am 59 years old. Was diagnosed with adenocarcinoma of the left upper lung in Feb 2003. Have had surgery, chemo (carboplatin and vp16) and radiation therapy on the mediastinum. My first set of scans was done Oct 2003 and were clear. My latest screening was a chest film in Jan 2004...so far I am clear. I have a husband, Chuck, who has been wonderful and two children...each of them has a 4 year old boy.
April 19,2004, clean CT of the chest!
July 16th, 2004 clean MRI of the brain and clean chest xray.
Oct 22, 2004..clean CT/PET...yea!
Feb1, 2005 Clear chest x-ray and MRI of the thorasic and lumbar spine. Well, clear x-ray and almost clear MRI. The actual report sees a blip on the T7 vertebral space. If pain increases we will rescan early, otherwise wait til May, 2005
June 1, 2005..had CT/PET scan and all is still clear. Next scans are scheduled for December.CT/PET combo done on Dec 5, 2005. Still NERD. The word infinitesimal was used to describe my chances of reoccurrence. YEA!
6/14/06 Oncologist released me. Said to have my PCP continue annual checks and x-rays. Its been almost 3 years since any treatment. Yea!
8/7/06 3 1/2 years since any treatment.
12/06-Chest xray reads NED...released from my radiation oncologist. I am suppose to make sure my PCP follows me carefully.
2/8/07 MRI Brain...NED [/size]7/23/07 PET/CT NED
3/18/08 MRI Brain...NED
11/12/11 I am now 67 years old and still NED.

Debi,
What a well-written post. I see a lot of myself in your story. Once when my Mom was hospitalized,I spoke with her Oncologist who then winked at me at the end of the conversation. I proceeded to disect any possible reason for the wink.I drove my family up a wall about this wink. Naturally, I jumped to the conclusion that a wink to a family member was bad news.I never did determine the meaning of thet wink,but it sure did give me something to think about!
Hugs,
Lynn

_________________
Dad with SCLC mets to liver 1983
Dad with SCLC mets to kidney 3/03
Deceased 5/21/3
Mom died 1998 -SCLC

You roused memories, laughter, and empathy with your witty epistle. Thanks for all of it, and so glad that the MRI was clean. Carry on!!!!

_________________
"Pain is temporary. Quitting lasts forever." Lance Armstrong

"Every moment is a breath-taking, transitory experience, never to be repeated again." - Don Juan Matus

Tiny
Age 58 at dx; lifelong non-smoker
12/01 dx NSCLC bronchoalveolar-type adenocarcinoma (BAC), Stage IIA
2/02 Lobectomy RLL; no chemo or rad
6/03 MRI = "empty"
3/05 Bone Scan = negative
2/08 CT = "No Evidence for Metastases or Recurrence"
Enjoyed 6+ years of NED
1/09 CT/PET:Recurrent disease: multiple new nodules in both lungs, mediastinal lymph nodes, and spot on liver.
2/3/09 Bone Scan: Degenerative arthritis (hooray!)
2/4/09 Started Tarceva
~~ picture: Temple of Poseidon, Greece 4/08 ~~

I would have done the same thing. humans are so funny!! I'm so glad it all worked out well.
(sorry to come in so late)
I LOVE a little AC/DC on the LCSC, too.
xoxo
amie

_________________
62 y.o. mom w. NSCLC, 54 at dx
10/2000 - lobectomy for stage 2 (4 lymph nodes) non-small cell adenocarcinoma, after detection by chest x-ray for another surgery
2002 - spot #1 appears near lymph nodes in resected lung, unreachable for biopsy, watch and wait
5/2005 - spot #2 appears on PET/CT 6 months after last check
6/2005 - spot #2 is confirmed NSCLC, AC (same as '00) after needle biopsy
6/24/05 - right intrapericardial pneumonectomy, clear margins
6/29/05 - home from the hospital!
7/13/05 - post-op visit, 5 of 7 nodes involved and 2 tumors with BAC features and ltd. nerve involvement, adjuvent chemo recommended, onc. appt. 7/26/05
7/15/05 - back in hospital with PE, slight pericardial effusion, and UTI.
7/20/05 - home from the hospital on tinzaparin injections
7/26/05 - 1st onc. appt., too sick from post-op complications for chemo right now, recheck in 2 weeks
7/27/05 - surgeon appt. - ambulance to hospital, emergency surgery to place pericardial window
7/28/05 - vena cava filter for blood clots placed, A-fib controlled by cardizem
7/29/05 - pericardium treated to prevent further effusions
8/2/05 - home from the hospital!
8/9/05 - onc. appt., positive for marker for Tarceva, wait & see re: chemo
8/11/05 - readmitted to hospital with pneumonia and pleural effusion
8/18/05 - home again!
9/1/05 - onc. appt., no chemo. but will start Tarceva in 1 month
9/7/05 - surgeon appt., lung and heart look good, scans in 3 months
9/29/05 - onc. appt. - begin Tarceva!
11/1/05 - onc. appt., all is well, increase dose, track by phone until Jan.
12/5/05 - surgeon appt., all is well
12/6/05 - per onc., increase Tarceva to 100mg
12/8/05 - admitted to hosp. with bleed in brain (stroke, no clot no mets!) discontinue blood thinners and Tarceva for now
12/11/05 - home from hospital, no right side peripheral vision...
12/27/05 - onc. appt., back on Tarceva, no more blood thinners (duh!)
2/3/06 - per MRI, hematoma on brain 'greatly reduced', driving limits, etc., removed
3/8/06 - NED
3/21/06 - onc. appt., Tarceva lowered to 75mg. because rash is worse
7/11/06 - NED (I think); we learn mom was staged at IIIB, scans in 6 months
10/17/06 - liver sonogram, after elevated enzymes in routine bloodwork, liver NED/normal
1/16/07 - onc. appt. and scan results - ALL CLEAR! continue 75mg of Tarceva daily, recheck in 6 mos.
7/07 - NED again. onc. discusses taking mom off Tarceva in 6 months
12/20/07 NED! just a little inflammation in her lung. no more Tarceva.
3/2008 - pulmonologist recommends supplemental O2 24/7 due to very low sat rates upon exertion
11/25/08 - mass on brain diagnosed, referred to MSKCC for treatment and follow up
11/27/08 - final tally: large tumor on right lateral ventricle, 3 small lesions on cerebellum, 1 lesion on spine
12/2/08 - surgery to remove largest brain tumor
12/22/08 - met with oncologist and rad. oncologist, directed to 14 treatments of WBR and referred to neurologist
12/26/08 - neurologist recommends RT to spine as well as WBR, for "tiny pockets of disease"
12/31/08 - commences 14 RT treatments to brain and spine
1/1/09 - hospitalized overnight for vomiting attributed to too low a dose of steroids after 1st RT treatment
1/21/09 - finishes 14 treatments of WBR and spinal RT
1/26/09 - CT scan of lung
1/29/09 - met with onc., CT shows disease in lymph node in lung, recommends Tarceva-based chemo
3/6/09 - with bladder and bowel incontinence and rapidly declining mental status due to progressing leptomeningeal mets, the doctors tell us there is nothing more they can do 3/10/09 - Mom is transferred to Calvary palliative care hospital in the Bronx
4/20/09 - Mom dies surrounded by love and light

mom also had a thyroid malignancy in 1993, immediately after losing her sister to renal cell cancer. I am 37 y.o. daughter, also have a brother, 33.

Debi, I am so sorry that it took me so long to read your wonderful post! I am thrilled that your test results were WONDERFUL!!! I thoroughly enjoyed your story and like others, think you should have this published! Being inpatient and a worrier, I would have thought on exactly the same lines that you did. I will have to share my last MRI experience at another time. But...I am severely claustrophobic if that tells you anything in advance! After three tries, I had to undergo general anesthesia at the hospital in order to have an MRI. During the first try, there was a power failure while I was in the machine! Your story really made me smile!!!

_________________
Wife of Dennis King, diagnosed with extensive SCLC 02-02. Treated with CPT-11 & Cisplatin as first round of treatment; Topetecan second round. Lost his brave battle with cancer 12-15-02. Dennis is lovingly missed by his family and friends each and every day!

"Each time we embrace a memory, we meet once again with those we love ~
for the heart never forgets."

Every now and then soft as breath upon my skin, I feel you come back again....and I believe.