Not active in treatment Stage IV ?

[MaribethW]

I am a 2 1/2 year, going on 3 in May, survior. I just wanted to know is anyone out there not actively in treatment for Stage IV NSLC? I just want to know if how I feel at times just normal or maybe I need to talk to someone. I just want to know if you are not active in any treatment at the moment do you sometimes wish you were because doing nothing makes you feel like you are letting cancer do what it wants? I mean I do get scans every 3 months and have been N.E.D. since last March, so I am more than thankful for that, but I guess it kind of scares me at times, and not the majority of the time, but sometimes that not doing anything will undo everything I have fought so hard to get to. In one way I fully understand the doctor is watching everything closely, but I guess after completing two separate rounds of chemo and two different rounds of Tarceva, I feel at a loss at not doing anything. Just wanted to know if anyone else has gone through that period.

[recce101]

Hi, Maribeth, welcome to the group! I believe we have some stage IV members who are NED and others who are stable and not currently on treatment. You might be hearing from a few of them. I've been on treatment continually for almost 3 1/2 years, but there's a possibility I'll be taking a treatment break at some point depending on what my next scans show.

I understand what you're saying, but consider this. While stage IV is generally considered incurable, I believe cures have been achieved in some cases ("cure" being defined as 5 consecutive years with no evidence of disease). And if in fact your various treatments have eliminated all of the micrometastases in your bloodstream, continuing treatment without a known target will cause damage to your body that might otherwise be avoided. If you allow your bone marrow and other body reserves to recover, you'll be better able to handle other physical challenges that may come your way in the future, whatever they may be.

May I suggest that you post a similar question at cancergrace.org (GRACE — Global Resource for Advancing Cancer Education). GRACE is led by Dr. Howard "Jack" West, a Seattle oncologist who is an internationally-recognized expert on lung cancer and who gives high priority to promptly answering questions online. A lot of us are "dual citizens" and have the same usernames there as here. You'll get a thoughtful and reliable answer from one or more of the oncologists on the GRACE faculty. Congratulations and Aloha,

Ned

[jaminkw]

Maribeth, welcome to the site and I'm so glad I saw your post this morning. I'm stage 3b, told I would be 4a in the new staging system. I was on treatment for a year, six months NED. I choose to go off treatment (Avastin maintenance) and was NED another six months. I really thought I had it licked and would remain NED even tho the drs said the expectation was it would come back. It did and I was devastated emotionally but not physically. Now I'm on Alimta. It appeared at the last scan that we were effectively kicking the cancer back again after nine months back on treatment.

I don't regret going off treatment. The little time I had feeling normal was wonderful. But, I'll be honest, when the cancer returned it appeared to me that the scans showed it worse than before. My onc would not confirm that but when I told her recently that I was waiting for a couple of NED scans and would elect to go off treatment again, she became very intense in her attempt to get me to reconsider. She'd no objections to my going off Avastin as it gave me raging bp without massive doses of bp med. But she is very apprehensive of me going off Alimta prematurely.

It's o.k. to be scared but you'll be scared on or off treatment once you have the dx, especially the advanced dx. Only you know what you can do but I'd listen to your onc and if he/she is comfortable with you off treatment, enjoy it. Even tho the numbers on the scan made my cancer look worse when it came back, I didn't lose any functioning or appear any sicker. And the line of treatment now is relatively easy and seems to be doing the job. We're all different but hope my experience helps you in your dilemna.

Judy

[jstdzy]

Maribeth,

I was dx'd with sclc. I had surgery followed by chemo then just scans every 4 months. Most times I feel like it's all behind me, but a cough? or a headache? I wonder if it's back. I think that is just going to be my "new normal" for awhile.

Dana

[MaribethW]

Thank you for all the replies so quickly. My doctor keeps reminding me to enjoy not being in treatment because there will be a time when I will be wishing to be in that position. I have been very blessed to have a very slow growing tumor at this time. In fact from October to now nothing has changed on the scan. Thank you all for reassuring me to enjoy not being on treatment and letting my body get stronger inside so when I do have to face treatment again I will be that much stronger! Thanks Ned for that web site you referred me to. I have heard of Dr. West through the Lung Cancer Alliance group but never have talked to him personally. I will definately check it out. Thanks, it is great to have the support.

Maribeth