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 Post subject: As promised:Update
PostPosted: Fri Oct 28, 2011 11:26 am 
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Joined: Mon Feb 23, 2009 1:48 am
Posts: 232
Location: Forests and foothills of the Ozarks, Ark.
Hello all,

I know you were beginning to wonder " where's Dawn's update?" Well I finally have some news,

I finally saw the Oncologists, and they decided my platelets were to low to do chemo. they were 136 when I left Dallas after my second round of chemo. Two weeks later when I see the onc.s here in Little Rock, they say they are only 36 (I firmly believe that that was a mistake made by the lab , and they misplaced the one(1)before the 36.) So they said wait a week and see if it recovers.

Okay I wait another week (two weeks after I should have had my chemo) and the platelets are back to, you got it, 136. Isn't amazing how all these numbers seem the same over time? Them they asked how the doctors in Dallas determined the lesions on the outside of my skull were cancerous? I told them that I had had a combined pet/ct scan and that they did a ct of my head. And them they had a radiologist determine that they were probably cancer and they( the Dr.s in LR) just needed to read all the reports and the fact that there had been some discussion on cutting my chemo to only 4 rounds....Then they decided to do a ct scan of my head, abdomen, and pelvic area. So I waited a week for that.

On the appointed day, I showed up a little early so I was the second person to have to drink 4 small styrofoam cups (small cups) of this orange contrast stuff, that tasted like diet sunkist orange soda. And mind you they still had not let me go to the powder room, I felt like my eyeballs were floating in a sea of orange soda!
So they take the scan of my head and and the other aformentioned areas. and then gave me the injected contrast that makes you feel like you have suddenly spike a fever all over. I hate that stuff!
So, then we wait another week to get the results. By this time I was ready to just tell the oncologist to finish the damn chemo, however, he had some different news for me. They decided that the lesions on my skull were possiblely caused by what everyone(except the neuros in Dallas) agrees is my still undiagnosed MS. The lesions are a symptom of Ms and don't usually show up in sclc like they did in my head. The doctor also said that they had not seen many patients with sclc live as long as I have after my chemo. When I said that they got a biopsy from my right lung and that sclc was the diagnosis, he said that he was sure that it was sclc, (especially after I told him if he needed to see everything back to when I was diagnosed, that I would be glad to bring him all of my medical records going back to my gallbladder surgery in 2004). Then he said, that the amount of mets that I had, when first diagnosed, and the suv were charted pretty high at that time in all areas of mets, and were all still slightly lower than they had been for the last 3 years (they were lower because of the two rounds of chemo I had already had.)And that the areas, that showed no more mets still showed no mets, and the affected areas were still my left hip and femur and the two vertabra in my back.
So to make a long story short, they decided, no more chemo, and we'd scan again in 3 months to see how it was going and if the lesions were getting any worse(ie. bigger), and that suits me just fine. Then I had to go see my new PCP. who refilled all my meds after I told him the onc. had already done so, and also scheduled me an mri, which I promptly canceled, as I don't believe in unnecessary tests.I told the nurse in the mri scheduling office, if my pcp wanted an mari, to just look at the one from dallas that I had in the middle of August when I was admitted to the hospital to make sure I wasn't having a stroke. I did not tell you about it in an update because I honestly don't think the migraines and resulting symptoms are caused by my cancer. But I will tell you about at a later time if you are interested. And the Dr.s here said since no one has done a biopsy to the lesions. they don't consider it a recurrence of my cancer. And he also said that miracles happen all the time and I must be one as I have survived so long with an sclc-ext. diagnosis.
Sorry this was so long but this has been more trying than if they had just stuck with the chemo as scheduled. Iam glad we didn't have to, cause I'd like to get some of my hair grown back in before it really gets cold here. It gets colder earlier here than back around Dallas and I really don't want to bald when it does get cold.
There you have it, and it's back scans every 3 months. At Least they are not pet scans, so I won't glow in the dark this halloween, lol.

I will be checking in more often now that things have settled down a little bit.

Be looking for you in the funny papers!lol Have a blessed day!

Dawn




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 Post subject: Re: As promised:Update
PostPosted: Fri Oct 28, 2011 3:07 pm 
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Joined: Fri Apr 02, 2010 10:49 am
Posts: 2004
Location: W. Michigan
Wow Dawn! Thanks for the update. You've been through so much! But it sounds like good news all around for the most part! I'm so glad. Hope you can join us back on the daily Air again. We missed you.

MI Judy

_________________
6/07 DX NSCLC, Left Upper Lobe wedge resection: Stage 2.3/4, (2B?) Adenocarcinoma, measures 2.5x1.5x1.1cm. Involving visceral pleura but not through it. 5 rounds chemo, carboplatin and Taxol. Subsequent scans NED.

1/11 3.5 mm node found. 10/11 CT node now 8 mm, and new 6 mm node. 11/11 CT Pet shows slight uptake. 1/4/12 Biopsy - Pneumothorax complication. 1/14/12 Lobectomy of upper rt. lobe. NSCLC Adenocarcinoma in situ, nonmucinous (bronchioloalveolar carcinoma) 1.4cm involves pulmonary parenchyma.
3/14/12 Begin 4 cycles of Cisplatin/Navelbein, with Neulasta shot
4/6/12 Chemo changed to Carboplatin/Navelbine without Neulasta shot. Reduced chemo by 50% due to intolerance.
7/5/12 CT scan is clean, NED for lung cancer! There are issues with liver and stomach that will be investigated but not believed to be because of cancer. Wait and see!

*Avatar was taken 7/3/12 on our way out to see the Fireworks on a friends boat on their lake!

Mom dx SCLC 1/96, passed 10/19/96, age 62
Dad dx Brain cancer 4/87, passed 6/87, age 57
Sister dx Brain cancer 4/83, passed 12/83, age 25


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 Post subject: Re: As promised:Update
PostPosted: Wed Nov 02, 2011 12:23 pm 
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Joined: Fri Dec 28, 2007 6:32 pm
Posts: 4769
Location: Key West, FL
Dawn, I am so sorry for this. I'm gathering the chest was clear and the extended chemo was for the brain lesions. Hope things turn out well for you in the 3-mo followup scan.

I know a little bit about working between more than one onc. The one in Key West who is only supposed to be overseeing my infusions here said to me yesterday, "Let's face it, most people with your diagnosis would be dead by now." That was only part of his spiel disagreeing with how my MDA Onc is treating me. Hope you can gain some confidence with these new docs. It's tough.

Judy in KW

_________________
Cytology report on fluid removed from lung after pleural effusion and pneumonia Sep 07 showed adenocarcinoma cells. Dx IIIb NSCLC Oct '07 at MDACC, Orlando. Fol 6 rounds Taxol/Carboplatin/Avastin and 2 Avastin, CT/PET 4/1/08 pleural thickening gone and no active cancer cells. 11/3/08 STILL NEVD. CT/PET/MRI 5/4/09 Cancer back, still in the pleura and chest wall, small amt of fluid, all in left lung.
5/11/09 Start on Alimta every three weeks.
7/13/10 Had Alimta on road in Corning NY.
8/24/09 Scans show some improvement. Continue on Alimta.
9/14/09 Chemo on road in Mt Holly NJ.
10/6/09 Started regular Alimta infusions in Key West.
11/3/09 CT and PET scans showed significant improvement. Some issues already resolved.
2/3/2010 No evidence of residual or recurrent disease. NED! Stay on Alimta.
5/6/10 Am considering myself still NED until/unless proven otherwise in July. Rabid radiologist thinks he sees something suggestive of similar to some abdominal cancer. No light up on the PET. Am hoping for the best. Stay on Alimta and scan in 9 wks instead of 3 mos.
7/8/10 Chest CT unchanged (NED Feb '10). Infiltration in the region of the omentum is probably slightly more prominent than before. Diverticulosis requiring antibiotics.
Jul, Aug, Sep, continued Alimta in Corning NY, Portsmouth OH and Mt Holly NJ.
10/14/10 Chest CT unchanged from Feb '10. Findings likely representing progressive nodular peritonal carcinomatosis in the midabdomen. Treatment changed to Tarceva started in Nov.
12/15/10 Chest CT unchanged. Abdomen changes compatible with peritoneal carcinomatosis again identified with mild progression noted.
3/16/11 CT chest unchanged. CT abdomen progression ascites (fluid). Progression of soft tissues nodularity on the peritoneal surface anteriorly with diffuse omental involvement.
4/13-15/11 Hospitalized at MDA. Removed 4 1/2 litres (8-9 lbs) of fluid from abdomen 4/14. Started on taxotere before release on 4/15.
5/16/11 Hospitalized for fever, neutropenic. Treated with intravenous antibiotic and antiviral. Given blood transfusion. Note that KW Cancer Center did not give me my Neulasta shot after my chemo on May 6. Onc had me cancel my 5/26 chemo until after my scan on Jun 6. Was discharged on oxygen. Test w/Dr Gerth 5/26 indicated I could go off sitting and sleeping O. Will do walking test 6/2.
6/2 Did not get requisite numbers on walking test. Left for Orlando 6/5 still on oxygen.
6/6/11 MRI normal; CT stable. Taxotere and Neulasta at MDA 6/7 and 6/8.
6/13/11 Appointment with Dr Olham in KW. Off oxygen week of 6/16.
8/8/11 CT scan showed stable with perhaps some lessening of fluid. Stay on Taxotere.
10/10/11 CT chest still clear, CT abdominal lining stable. Stay on taxotere.
12/19/11 CT chest clear, CT abdominal lining stable, MRI clear. Stay on taxotere.


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 Post subject: Re: As promised:Update
PostPosted: Wed Nov 02, 2011 4:44 pm 
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Joined: Sat Jan 17, 2009 1:00 pm
Posts: 1070
Location: Seattle
Dare we ask what you said in return? Or at least in your head a few hours later?

Dawn - I hope you are feeling well off chemo. I've only been off 4 weeks and someone today commented on how bright eyed I looked this morning. Yes, in the a.m.!


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 Post subject: Re: As promised:Update
PostPosted: Thu Nov 03, 2011 1:14 am 
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Joined: Mon Feb 23, 2009 1:48 am
Posts: 232
Location: Forests and foothills of the Ozarks, Ark.
Judy,
I need to clear up some confusion about the lesions on my skull. These lesions are on the bone beneath the skin and muscle. they have not broken through the skull and reached the fluid or through the Dura (the tough sac surrounding the brain and inclosing all the fluid) I can feel where they are or were if I rub my head.

I just hope the Dr.s here are right, and that they were being caused by the MS and not the cancer...
So my fingers are crossed until the next scan.

Dawn

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 Post subject: Re: As promised:Update
PostPosted: Thu Nov 03, 2011 7:50 am 
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Joined: Fri Sep 19, 2008 6:08 pm
Posts: 1422
Location: Crowley, Texas
Good to hear from you, Dawn. Enjoy your chemo break.

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Bud

Long distance cyclist and lung cancer survivor
56 years old at time of diagnosis in 2007, now live in Crowley, Tx
Nov 2007 - Tentatively diagnosed as NSCLC stage I from CT scan
Dec 2007 - Upper left lobectomy, biopsy showed one cancerous lymph node, changing the diagnosis to stage II (squamous cell)
Feb to Apr 2008 - Three rounds of cisplatin and gemcitabine
Apr 2008 - chest x-ray, NED
May 2008 - brain mri, clear
Jul 2008 - CT scan, NED
Dec 2008 - CT scan, NED
June 2009 - CT scan, NED
Jan 2010 - CT scan, NED
July 2010 - CT scan, NED
June 2011 - CT scan, NED
May 2012 - CT scan, NED
December 2012 - CT scan, NED. I am now a 5 year survivor!

June 2009 - Wife Rose diagnosed with breast cancer
Stage III IDC
Sept 2009 - Finished 4 rounds of chemo (AC)
Nov 2009 - Surgery
March 2010 - Finished 12 weeks of weekly Taxol
August 2010 - CT scan, NED
August 2011 - Checkup, NED
August 2012 - Checkup, NED
The rest of my story is at:

http://www.lungevity.org/l_community/vi ... hp?t=38841

My blog - uneasy-rider.com


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 Post subject: Re: As promised:Update
PostPosted: Thu Nov 03, 2011 11:10 am 
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Joined: Fri Dec 28, 2007 6:32 pm
Posts: 4769
Location: Key West, FL
Thanks Dawn. Crossing my fingers with you. Let us know when you get the results.

Judy in KW

_________________
Cytology report on fluid removed from lung after pleural effusion and pneumonia Sep 07 showed adenocarcinoma cells. Dx IIIb NSCLC Oct '07 at MDACC, Orlando. Fol 6 rounds Taxol/Carboplatin/Avastin and 2 Avastin, CT/PET 4/1/08 pleural thickening gone and no active cancer cells. 11/3/08 STILL NEVD. CT/PET/MRI 5/4/09 Cancer back, still in the pleura and chest wall, small amt of fluid, all in left lung.
5/11/09 Start on Alimta every three weeks.
7/13/10 Had Alimta on road in Corning NY.
8/24/09 Scans show some improvement. Continue on Alimta.
9/14/09 Chemo on road in Mt Holly NJ.
10/6/09 Started regular Alimta infusions in Key West.
11/3/09 CT and PET scans showed significant improvement. Some issues already resolved.
2/3/2010 No evidence of residual or recurrent disease. NED! Stay on Alimta.
5/6/10 Am considering myself still NED until/unless proven otherwise in July. Rabid radiologist thinks he sees something suggestive of similar to some abdominal cancer. No light up on the PET. Am hoping for the best. Stay on Alimta and scan in 9 wks instead of 3 mos.
7/8/10 Chest CT unchanged (NED Feb '10). Infiltration in the region of the omentum is probably slightly more prominent than before. Diverticulosis requiring antibiotics.
Jul, Aug, Sep, continued Alimta in Corning NY, Portsmouth OH and Mt Holly NJ.
10/14/10 Chest CT unchanged from Feb '10. Findings likely representing progressive nodular peritonal carcinomatosis in the midabdomen. Treatment changed to Tarceva started in Nov.
12/15/10 Chest CT unchanged. Abdomen changes compatible with peritoneal carcinomatosis again identified with mild progression noted.
3/16/11 CT chest unchanged. CT abdomen progression ascites (fluid). Progression of soft tissues nodularity on the peritoneal surface anteriorly with diffuse omental involvement.
4/13-15/11 Hospitalized at MDA. Removed 4 1/2 litres (8-9 lbs) of fluid from abdomen 4/14. Started on taxotere before release on 4/15.
5/16/11 Hospitalized for fever, neutropenic. Treated with intravenous antibiotic and antiviral. Given blood transfusion. Note that KW Cancer Center did not give me my Neulasta shot after my chemo on May 6. Onc had me cancel my 5/26 chemo until after my scan on Jun 6. Was discharged on oxygen. Test w/Dr Gerth 5/26 indicated I could go off sitting and sleeping O. Will do walking test 6/2.
6/2 Did not get requisite numbers on walking test. Left for Orlando 6/5 still on oxygen.
6/6/11 MRI normal; CT stable. Taxotere and Neulasta at MDA 6/7 and 6/8.
6/13/11 Appointment with Dr Olham in KW. Off oxygen week of 6/16.
8/8/11 CT scan showed stable with perhaps some lessening of fluid. Stay on Taxotere.
10/10/11 CT chest still clear, CT abdominal lining stable. Stay on taxotere.
12/19/11 CT chest clear, CT abdominal lining stable, MRI clear. Stay on taxotere.


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 Post subject: Re: As promised:Update
PostPosted: Mon Nov 07, 2011 10:42 am 
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Director of Support & Advocacy, LUNGevity
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Joined: Thu Jan 09, 2003 11:09 am
Posts: 14985
Location: Texas
thinking about you- keep us updated when you can!!
hugs,
K


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