Hi,
I"m not sure if i'm doing this correctly. Please forgive me i'm new to this site and have never done this before. I just wanted to share my story and hopefully hear some positive feedback. I loved hearing the lung cancer survival stories. My mom is 60 years old...about 4 months ago she started getting floaters in her right eye and the eye doctor said she had inflammation in her eye, possibly due to her arthritis. My mom has had arthritis her whole life and been on medication for it. then she started getting a slight headache from time to time that eventually last 2 hours and was very painful..... the eye doctor sent her to the nuerologist who wasnt to concerned b/c she passed all the neurological screening tests, and seemed ok, but wanted to do an MRI b/c she was looking for something to do with the eye. The doctor was very surprised when she found a golf ball size tumor on the back of my moms brain....my mom went to a new neurologist and surgeon that she knew was one of the best. The surgeon said the tumor was in a great location and would be easy to remove... the surgery lasted 3 hours and went great. She was up and moving/walking the very next day and is recovering nicely. With this they did cat scants, pet scans and etc... they did discover a quarter size spot on her lung. the surgeron said its possible they are related but stranger things have happened. long story short my mom went this week for her brain biopsy results and the dr said yes it was malignant....and she will see an oncologist this monday coming up to review the lung results and take the appropriate steps. My mom is not to forth coming with information which i completly understand she is still in shock and very very upset. So i try not to overwhelm her but would like some answers. From what I can gather from what my step-dad has told me, most likely it is lung cancer and it spread to the brain (which they removed the tumor already about 2 weeks ago) I dont know what stage it is in, and from what i read on the internet which i hate to do it said once the cancer spreads its in a much later stage. THe dr said that they will start treatment soon... I'm not familiar with this, and all the terminology if someone could give me some input i would truly appreciate it.......My mom is my bestfriend and means the world to me, its very difficult to deal with but i'm being her rock right now....My twin boys are going to be here in just a few months and I pray everyday that my mom will be able to meet them.
Thank you for listening

Hi Lovelife,
Welcome,Its a pleasure to meet you,I am really sorry for the reason you are here.A cancer dx does overwhelm everyone concerned,its takes time to adjust.It is possible that the brain tumour removed from your mother does link in with the tumour found in her lung.Lung cancer is measured by four different stages,with a sub-division in each of A and B.At this moment in time you do not have a clear picture,where your Mum is on staging.Communication with her Dr/Oncologist really is the first port of call,it is also advisable whenever your Mum has an appointment with her medical team,someone accompanies her,to assist in listening to whats being said,and perhaps responding to issues that are raised,for further clarification.
Take one day at a time,lung cancer is not the death sentence it used to be,with regard to staging,there are many long term survivors here,regardless of the stage they were dxd with.I wish your Mum every success with her treatments as they progress,I had chemotherapy and surgery to remove the upper portion of my right lung,that was three years ago.Contrary to all my fears,I had no side effects to the chemo,the surgery though a bit uncomfortable,was not a painful ordeal, nor did it leave me a breathless invalid,I did return to work soon after and I have been living the normal happy life I enjoyed prior to my dx.

_________________
Regards,
Eric Byrne

To read my story, please follow the link : http://lungevity.org/l_community/viewtopic.php?t=43268

Thank you so much for responding to my email! I truly appreciate your kind words and input. If you dont mind me asking, what stage was your cancer in? I'm so happy to hear how wonderful you are doing today, that is great!! I keep telling myself my mom will have a miracle story one day to share with others as well!! I have three older brothers, and one in particular is having a terrible time dealing with everything. He is very hung up on the stage and the fact that the cancer could have spread. Everyone deals with things differnently but i try to give him positive feedback as well. Just last night mom ran a fever of 101.8 i called the nurse practioner who works closely with her surgeron they have been wonderful. They said to bring her back to hospital to make sure there was no infection. She is suppose to be getting released today, my step-dad said they did another cat scan/ chest x-ray, and blood work.... they did say that her sodium was a little low. They didnt not think she had an infection from the surgery. I'm still waiting for more results now. Hopefully she will be released today, but i know she is in good hands where she is.....she goes on Tuesday to see the oncologist and we will know more then, and have a more defined game plan.......staying positive!!!

Hi LL,

Once you have a treatment plan and know where she is at stage wise, you'll feel a lot more in control. I hope you continue to post here and let us know how it's going, so we can support you.

Once you get the treatment plan, do let us know what it is so we can advise you on what to expect.

Take care,

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

Welcome to the site. First of all, you might want to ask your Mom to tell her doctors that they have permission to discuss her case with you. I did with my daughter. I do believe there was a form I signed that listed both she and my husband for that purpose.

Don't worry too much about the stage. I nearly freaked when the surgeon scheduled to put in my port blurted out that in my case, the cancer was most certainly a 3 or 4. It turned out I was stage 3b and have been on treatment most of 4 yrs. The good news is I'm relatively healthy and live a good life.

You are going through the worst time now, waiting for a firm dx and a treatment plan. Once that is in place, you and your Mom will settle into what we call the new normal. Do come back and let us know how things go with the oncologists. Hopefully you can be with her or have things in place to assure you get the whole picture.

Stay strong.

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.

Hi Lovelife,
Sorry for the delay in responding to your post on Friday.What stage was my cancer at dx?,well that was'nt mentioned by my onc,and to be honest I never give it much thought.It is perhaps a cultural thing?in the UK some of our practices and attitudes,differ from the USA,for example CT scans for a follow up after treatment,normal practice in the USA,every 3 months-I think,leading to at appointment time something known as "Scansiety"Our follow up consists of a 6 monthly check up and X-ray.I did last year, pay to have a CT done privately ,just for re-assurance,I took the report and a cd of the scan to my GP and onc,for interpretation,and was given quite a cold reaction from both.CT scans in their opinion was a money making racket that does more for the Docs pockets than patient care,and I should'nt have had this procedure done,it will make not the slightest difference to my survivor chances.
Since the tumour removed from my upper right lung was just over a cubic centimetre in volume,and there was local spread to the nearest lymph node,my understanding of staging definitions,this would make me Stage 2A?.I think as JudyKW example shows,we should'nt really obsess over staging.
Can I also mention, briefly, about my friend Robert Lowe,he was dxd with SCLC in 1993,given three months to live,hospitalised going through his chemo,family called out on three different occassions to his bedside,as his doctors did'nt think he would see the next day,well to his doctors astonishment,he made a full recovery,then on 2007,Robert was dxd with NSCLC,following a lobectomy and chemo,he made a full recovery,Robert is now 72 years old and is the UKs longest surviving duel LC patient,not just surviving but thriving,his attitude and energy for life is just amazing.You can read Roberts full story in the Roy Castle Lung Cancer Foundation.org website,mine is there too,but only fractionally as interesting as Roberts.

_________________
Regards,
Eric Byrne

To read my story, please follow the link : http://lungevity.org/l_community/viewtopic.php?t=43268

Hi Everyone,

Thank you all so much for responding to my posts..... Eric, I'm going to ignore the stage my moms cancer is in.... and hopefully she will do the same.... It dosnt mean she cant beat the odds. I look forward to reading your friends story. I love reading and hearing all these positive stories.
Judy- I'm so happy to hear that you are doing well!! I appreciate everyone's support on this site....I really look forward to it....and thank you for the great advice.
My mom is going to meet the oconologist, lung specialist, and her surgeron today....I know today is going to be very difficult for her, but the sooner she knows the better. Then she can be on the road to recovery!! Although I'am a bit concerned b/c the doctor said she had a respitory infection last friday and put her on antibiotics....she still has a fever..... this morning she had 102.....she had her appts today anyway so they are going to check her out when she comes in. I hope she gets past this infection she has soon, i know its making her nervous.....I will keep you all posted.... Hope everyone is doing well! and have a great day!!

Hi,
I havent been on in a very long time. I hope everyone is doing well!! This October my mom was indeed diagnosed with lung cancer. She had the brain surgery which removed the tumor and she is doing great, she has had many scans since and the brain in clear. The lung had two tumors on it. She started chemo after her surgery and the first type of chemo wasnt successful but the second one which she is currently on today is working great. THe one tumor on the lung is gone and the second tumor (last one) is dead. it died from the inside out. so yes they can see it in the pet scans but the doctor said its dead and as of last friday she has no cancer activity in her whole body. The doctor said that sometimes the tumor can still stay in you but as long as it continues to be dead and have no activity she is fine.......The doctor did not say remission but said she is stable and doing very well. The chemo she is on (not sure of the exacts) but she gets it in a drip IV every friday. she could do it once a month but since we dont live to far from the doctors in the City she goes once a week b/c side affects are less severe. Since day 1. she has no side affects. she dosnt throw up or get sick. she feels good... the only thing is she dosnt sleep as great b/c they give her a steriod in her chemo on fridays so that weekend its always tough for her to sleep. but the doctor gave her a sleeping pill which is helping a big. her hair is now starting to get thin, the doctors thought it would have falling out by now but its hanging on. My mom has a later stage of cancer, b/c it did spread to the brain. I dont talk much about the stage b/c it really scares me to death. i'm still so afraid for her. I have a few questions maybe someone can help. When do they consider someone in remission? I was confused to why she is having more chemo if she has no cancer activity my step dad said the dr said they want to make sure nothing spreads and since she is doing so great with the chemo and it worked he wants to continue it..... my step dad asked doctor will she be on chemo forever. he said he couldnt answer that now, some patients are on chemo forever and some we can stop... so what deteremines if she can stop if she has no cancer activity? and what i'm afriad of it that people say its the chemo that ends up hurting you and making you sick and etc, so then i fear how could she be on this long term does that mean her surival rate is not good? its so crazy b/c she isnt sick and looks good, of course a little different b/c she is starting to loose her hair but she is still active and etc..... I've been very positve and I have never shedded one tear infront of her, b/c i dont want her to think i'm afraid of this cancer. i want to help her beat it, but sometimes i'm so petrified......I guess what i'm getting at is it really true that at a later stage this is beatable....? my step dad said she is kicking some butt.... I guess i just need some insight or some positive feedback. I've returned to this site b/c i cant talk to my family b/c they are too emotional and I have to be strong for them. I just had two twin boys!! and i think my mom is fighting for them too!! thats a big inspiration to her... god works in mysterious ways, i had a few losses trying to get pregnant then i finally do after a few yeas...and i find out half way through my pregnancy my mom has lung cancer and needs brain surgery. I'm going to continue fighting for her and being positive. thanks sorry for all the rambling really needed to vent. Have a great day!

Hi - it was nice to see your update. It sounds as though your Mom is doing just great!! Stable is an excellent place to be -- I've been stable for 3 years now. I'm not sure, but I don't think they use the term "remission" for lung cancer much. Most people are either NED (no evidence of disease) or stable. Your Mom may be stable for the same reason I am. My tumor is "dead", but because it still shows on scans they label it "stable". I couldn't be happier -- Stable is great! As for the chemo, it appears your Mom is doing amazingly well. That is good, because if she is not suffering lots of side effects she is able to keep up her strength and her stamina. I know many people are on "maintenance" chemo for years.

Try not to get too hung up Stage. Staging is used mostly to determine treatment. Some people with earlier stage can have progression and not do well, and people with later stage can respond well to treatment and have years of good quality life.

For now it sound like things are going well and I hope they continue for a long time.

_________________
3/98 Dx squamous cell NSCLC 2a at 50 yrs
4/98 Left lung removed, no chemo/rad
8/08 Persistent cough and shortness of breath, first appt. with pulmonary doc 11/4/08
11/08 X-ray and CT show tumor in right lung. PET scan confirms tumor, shows no apparent spread
12/08 CT/needle biopsy shows squamous cell NSCLC IIIB, doctors don't seem to agree if its a new cancer or recurrence - but onc believes it is a new one
12/08 Start concurrent radiation/chemo, Cisplatin/Etoposide
1/09 Chemo switched to Carbo/Taxol due to intolerance of Cisplatin
2/09 Radiation completed
3/09 Chemo completed
5/09 CT shows spot where tumor was likely/hopefully scar tissue
6/09 Begin Lucanix trial
9/09 CT scan - stable
12/07/09 CT scan - stable
3/1/10 CT scan - stable
6/1/10 CT scan - stable - begin 2nd year of trial
8/23/10 CT scan - stable
10/25/10 CT scan - stable
1/20/11 CT scan - stable
4/25/11 CT scan - stable - completed drug portion of trial, now follow-up with 3-mo scans
8/1/11 CT scan - stable
10/24/11 CT scan - stable. At my request, switching to 6 mo scans.
4/24/12 CT scan - stable.
10/30/12 CT scan - stable.
2/26/13 CT scan - stable

Avatar is with 10-mo-old grandson Ethan at Xmas

It's truly beautiful to see how much you love your Mom. Thank you for the update. I love to read others' stories of survival and courage.

Please know that it is possible for your Mom to live a good life. I have been living with this disease for 4 1/2 years. This site is full of similar people! Having this disease has taught me to grab onto every single moment in a way I never had before because, truly, no one knows how much time they have.

It's a long process of acceptance when one learns that they or someone they love has cancer. Best wishes to you and your family.

JackieM

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dx'd 1/12/08, stage 3b moderately diff'd adenocarcinoma, inoperable.
Feb/March '08. Chemo, radiation. Done good. Operable.
May. operation. NED
10/08, scan, ned
1/09 ned
1/10 pet positive nodes in neck and clavicle area. Chemo 'n radiation.
8/10 pet shows good response. Starting Tarceva.
5/2012 - Crohn's disease??? Seriously???
1/7/2013 - coming up on 5 years. still on Tarceva but NED. Tarceva is kicking butt.

Dianew- thank you so much for reaching out to me. I'm so happy for you and that your condition is stable. You seem to be doing great, and thats wonderful!! You are right about the stage, I never talk about it, but once i hear a family member mention it, my stomach turns. Like you said she's doing great and the fact that she is stable is wonderful! I will keep in touch!!
JoecelynM- Thank you for reaching out to me as well! I love this site. It is so helpful! like i said i dont talk much to my family b/c i have to be the strong one so its nice to get away and vent. Thank you for reminding me that my mom can live a good life. I Hope you are feeling well!!
I will keep in touch