Stoping chemo?

[BoBennett]

Hello to all those gutsy folks who decided not to go chemo or radiation. I am looking into stopping chemo at some point,. for no other reason than I think it will ultimately compromise my immune system and I believe that our bodies are the ultimate fighting weapon. I don’t know for sure, if and when, as I’m just beginning to look into it. I am (relatively) healthy at this point and I was not prior to chemo. Yet something in me tells me it wasn’t the chemo that got me back up and even if it was I am in a better position than prior to chemo. Any one out there with experience at stopping chemo while in decent health and how did it go. It is a strange roller coaster ride. In the beginning when I was diagnosed and was down, my thoughts were to not take chemo and such, and basically let the disease take its course. Now that I feel (relatively) good the fight is on. What worries me is that if I quit chemo, and I begin to feel down I may lose that fight I have now. I kow these are mostly question only I can answer but I am just wondering how it goes for others. There is a way to win at this disease, we just have to find it!!!!!.

[Elaine]

Bo

You and I are kind of opposite places. I chose no chemo while I was feeling good and took many things to strengthen my immune system to not only fight the cancer but to get strong in case I decided to do Chemo or rad. Over the past 4-6 weeks I began to experience fatigue--no weight loss, just tired. Other than that, I feel better than at DX and had no chemo. Scans three months after DX showed microscopic progression--nothing really.

I just feel there has been progression lately. A little less stamina and a little more SOB going upstairs and exertion in humidity.

I don't know what you were told, but I was told no chemo would cure me or give me more than 3 months or so longer than without.

They also could not rule out mets and still haven't ruled any out nor in either. I go again within three weeks for further tests unless I just decide to stay on the path I am on.

One thing I want to caution you about is this: The feeling of denial is very strong especially when I am feeling good. On days I feel bad it's not hard to be confronted with the fact that my body and the meager supplements I am taking are not really curing me, they aren't hurting me, but ....

Bo, I wish I had the answer, but I don't.

I hope Dean chimes in here. He is on this road and more committed to it than I am. I don't really know how he is doing now. Last he posted he had started morphine, but I don't know for what kind of pain or for what symptom.

The only thing I can say is that I still have my hair, I still don't need oxygen and take very litttle in the way of meds. Most days nothing.

The timeline they gave me at DX was 3-6 months without treatment. I am just about at 6 months now.

elaine

[DeanCarl]

Bo,

I can't really answer your questions very well since my decision to not use chemo or radiation was pretty much a done deal right from the start.

The one suggestion I can make is to take the time to make VERY sure that the decision you do make is really the one YOU want. My decision was based on a lot of different factors but the main one was a choice of qaulity of life vs. quantity. I wanted, and still want, whatever amount of time I have left on this earth to be of the highest quality it can be.

Having decided that my whole effort these days goes into finding ways I can enjoy each day. The first part of that effort is a complete and absolute acceptance of where my illness will eventually take me. Notice I said "complete" and "absolute" acceptance. Without that acceptance there is no way I can focus on the things that make today a wonderful day to be alive.

I was not in "great" health when I was dx'd. The cancer was already causing a lot of fatigue and muscle weakness. I had to accept that and accept the fact it was only going to get worse (and it has, and it will). So I've had to learn to concentrate on what I CAN do each day and not worry about what I can't do.

Bo, it seems to me that if a person is not willing to accept, deep within their own heart, where the decision to not treat this disease will eventually lead that this is NOT the way to go. There is a place deep within each of us that holds the answers to the questions you are asking. Take the time to go there and see what those answers are for you, then have the courage to follow what you find there.

Elaine: Yea, I'm on a very low dose of morphine now along with the vicoden. Have some pain in the left knee. Could be bone mets, could be something else, but the morphine does the trick and, since it's such a low dose, doesn't loop me up too badly.

Dean

[BoBennett]

Elaine & Dean, I appreciate the responses. These are definitely questions only I can answer. The denial thing when one feels good is what has me going and I am a hard core realist and don’t believe in fairytales. Yet when the days were bad I was bummed to acceptance and now that the days are good I believe there is a way to beat this, but not if I’m toxified to the point my body can’t fight. I am not contemplating quality of the last days, though that is a good thing. I believe that other than spontaneous remission and miracles there are no cures to be had, and that sooner or later it always ends where it ends. That being said, a small percentage of folks seem to squeak by with good quality for many years and many of those folks seem to make life changes, along with alternative treatments and leave bad habits behind.

I well understand that 99.9% of lung cancer folks ultimately succumb and statistically I may very well be in that range, if so I hope to be strong and accept my fate. But I don’t necessarily believe that choosing no chemo will cause my demise any sooner than with the chemo. I choose to believe that strengthening my body will give me quality and quantity.

Time wise I’m not close to any decision but I like to be ahead and have a clear mind when thinking about these things.. I need to find a doctor who will talk to me first. I have asked my oncologist point blank three times what my time frame is , he gives no answer. After diagnosing me as stage IV he responded, “your healthy” and I wasn’t feeling particularly well at that point.

Anyway, anyone out there have a good outcome choosing no chemo.