LungLoveLink

Linking you to resources and support in the lung cancer community!

NSSLC Ardenocarcinoma Stage 4 and positive bone and lymph nodes

I found out today that I have ardenocarcinoma stage 4 NSSLC adenocrcinoma. Who out there has it and please describe how long you have had it, what program you are on, how you feel, what should I expect, any suggested Dr's, clinics etc. to extend my life based on a good/reasonable quality of life.

 

Views: 524

Reply to This

Replies to This Discussion

Hi dianed,

 

Sorry to hear about your diagnosis. With stage 4 adenocarcinoma these days, one of the more recent recommendations is to consider having your tumor tested for one of the many genetic mutations that have been identified. Some of them have treatments specifically tailored to target the mutation. A good start is to make sure you are going to a cancer center that has a lung cancer specific program. Are you able to travel out of state? Dana Farber is an excellent cancer center in Boston with a lung cancer program, and they do genetic testing. At quick glance, in Maine, this center has a lung cancer program and they are accredited by the American College of Surgeons Commission on Cancer: http://www.mmc.org/mmc_cibody.cfm?id=3298 There are others as well - this one just looked like it might be closest to you. 

 

I can't tell you about life with stage 4 lung cancer, but I can tell you that we have spoken to many survivors who have been living with it for years and have been able to keep it under control, with decent quality of life. 

 

Hopefully others will weigh in.

 

Amy

My wife Diane has the genetic EGFR mutation and will start on TARCEVA when she completes her 4th or 6th round of chemo. DO you know anyone who has used TARCEVA ?
Hi,

Yes, I have known many people who have been treated with Tarceva, both short term and long term. Do you have specific questions about it?

Amy

Amy, as I wrote above, I am looking for patients who have the same exact cancer as my wife and if they have progressed to Tarceva what was their experience before and during their taking of the Tarceva.

 

My wife is about to start her Tarceva pill regimen. Is there a standard reaction, similar to regular chemo, that she should expect ? We were told that side effects are rash and diarhea. If she gets a rash, what medicines acan be used to combat it ? When it is either, how severe  should she expect it to be ? Are there any other side effects to be concerned about such as fatigue, swelling of lung(s), etc.

Hi Diane,

 

I have the same disease. Let me know if you too are a non smoker and what activities you have been able to do up to your diagnosis. I have been living with this for one year now, treated first with the ABC's Carbo/Alimta/Avastin/ and now on Alimta and Avastin.  Since you never know how long you will live I have been doing just that, living, and traveling and doing as much as I can with my family as possible. 

I honestly will say I have been feeling a bit weaker these past few weeks, but continue to trudge forward and live life to the fullest each and every minute.

I do not know where you are located, but I am in California so I use the Cancer doctors in this area.

Good luck and talk, it helps having a good source of friends and family to be positive with you. Most of all stay away from the negativity and people trying to put in in the same barrel as others with cancer. 

Carmasp

 

Carmasp,

 

Diane has always been a social smoker and on average she had 1 - 2 CIGARETTES a day. Activities have been limited to minimal work around the house and gardening. She walks a mile every day but slower than she used to. We live in Ogunquit, Maine and North Naples, Florida. I have a ton of relatives and friends who are there for me and are vry positive and supportive.

 

What stage were you in when dignosed and what stage are you in now ?

Hi Diane's husband,

 

I was diagnosed with Stage IV July 2010, and have no Tumor mutations.  Since your wife has the EGFR mutation she will be given Tarceva, which I read is a very effective targeted therapy drug for those with this gene mutation, usually found in non smokers. You have a good source of friends and family nearby that will help you through all ups and downs of this disease.

 I want to clarify why I asked to speak with women that are non smokers.  I find that each of us has a unique form of lung cancer which varies from person to person on how they respond to treatment. What I am interested in is how non smokers are being effective physically, since we do not have the lung scarring that most smokers have developed through years of smoking.  This is why I ask what each person can do physically, actvities like cycling, hiking, working out or daily chores, and of course how long they have been treated with Chemotherapy.

I am on maintenance therapy, no shrinkage in tumors just holding at bay.  I have heard Doctors refer to a patient as "way" stage four, which I found amusing since there is no other classification to 5 or 6 and so on.

Physically I still work out daily, slower than last year, I have more nausea, fatigue and breathing increasingly is more difficult. I've had 15 Chemo treatments and with each I feel it takes longer to recover.

I am hopeful that these new drugs will help your wife and she will have a recovery. Please read other replies on this website for people with the EGFR mutation. It is very promising.

All the best to you and your wife,

Carmasp

Carmasp,

 

My wife was 'technically' a smoker although if you counted our almost 50 years of marriage together she averaged less than one CIGARETTE a day. She was a social smoker up until about three months ago when her NSSLC was diagnosed..

She is in her third round of regular chemo (since she started her chemo, each round has been more difficult that the previous round). Her stamina plus an upset stomach and difficulty breathing are her big issues. We walk one mile, her much more slowly than in the past, to our beach and back every day and when she has reasonable energy she will putz around the house and garden but not for more than an hour or two. She has been a very high energy person our whole married life so this has been very difficult for her especially leaving all of the non-cooking responibilities to her feeble husband. 

 

Thanks for the advice on Tarceva.

 

Chris

Hi-

I have Stage 4 Non Small Cell, adenocarcinoma - Right Lung -

I was diagnosed in 2007 as Stage 3A. Then metastisized to the brain in 2010.

I have been through a lot but right now I am STABLE, looking and feeling well.

 

I started with Cisplatin and Etopiside along with 32 sessions of radiation to kill the tumors.

It worked.  Then the same cancer was found in the fluid of my lung, so I was treated with Alimta.

When it returned again, we had to drain my lung and then  because I tested positive for the ALK mutation,

I qualified for a clinical trial, which I started in 2010. I have been on the clinical trial since April 2010 and so far it appears that the clinical trial (Crizotinib - which is oral meds) is suppressing the formation of new cancer cells.

 

Be sure to identify an Oncologist who specializes in Lung Cancer.  A teaching hospital is good, because they are more apt to have newer approaches. Have them test your tissue for mutations which can offer more additional options. If you tell us what State, there may be some recommendations from others on this site.

The most important advice I can share with you,particularly once you begin chemo, is to do everything in your power to avoid infections.  They can be more dangerous than the cancer.

 

Stay in touch. Those of us with several years of experience are here to help and support you.

Margot

 

 

RSS

© 2014   Created by AmyLCA.

Badges  |  Report an Issue  |  Terms of Service