What to do, what to do... :( Stage 3 Adeno Carcinoma, post op, pre chemo/rad.

[Kathy P.]

Is anyone struggling with the concept of Chemo?  And the tremendous toxins they want to inject in my body....verses possibly changing lifestyle and going the nutrition route?  Of course every family member and friend wants me to go Chemo/Rad. I had 2 nodules removed from my left lung and a lymph node that it apparently spread to...  The lymph node resting so close to my vocal cord nerve that I developed a "laryngitis" that caused the need to determine cause when standard measures proved to fail to solve.     I felt great, short of the noticeable voice impact, and still do after surgery, short of obvious surgical pain.  And to the best of my knowledge... Cancer free...  I guess that's not true for quite a while...  But I am not interested in the horrible odds of "5 year survival" and to endure all that Chemo and radiation subject you to... for that??   I have been reading up a lot on nutrition and juicing and Organics and GMO and of course I asked my Oncologist if nutrition mattered... "Of course not"...

I am meeting with my Thoracic surgeon this coming Friday, Oct 20...I have preliminarily/generically been diagnosed with Adenocarcinoma NSCLC.  The mutation not yet determined, awaiting results.  The surgery was a secondary change of mind, initially they were considering Chemo/Rad first then surgery, but changed direction when they... and They being the Cleveland Clinic in OHIO...didn't feel they had enough of a sample to determine Chemo route... The surgery was basically a wedge biopsy of the lungs having done a biopsy of the lymph node 2 weeks prior.  And even though it's in the Lymph node, they are not referring to it as metastatic....yet I suppose...

I'm sorry this may be all over the board...but the surgery has bought me time to look over solutions and I'm on info overload.  Initially, the Oncologist was suggesting Cisplatin and ALIMTA, but this may possibly change with further diagnosis....  Heard Cisplatin is more worse than C

I am scared that I'm adding insult to injury with Chemo.  There are sooooo many side affects that all I see is misery before death.  Has ANYONE found anything else ... that does not have such a barbaric approach to finding a cure or reversal of our dianosis'.  I do not mean to offend anyone who is choosing Chemo/Radiation... 

 

[Susan Cornett]

Good morning, Kathy.  Treatment choice is a very personal choice; you have to decide what's best for you and your situation.  I decided to treat mine as aggressively as possible. I'm an only child with a father fighting lymphoma; I figured my mom has enough on her plate! I had a lobectomy in February 2016; cancer had also spread to seven of 10 lymph nodes they removed.  I followed surgery with four rounds of cisplatin/alimta (pemexetred).  I had chemo on Fridays and generally felt good until Sunday (when chemo steroids wore off). Monday and Tuesday were rough but by Wednesday, I was turning the corner.  I had three weeks between treatments.  This is not to say that I didn't have side effects; I did.  I had a recurrence earlier this year and had additional chemo (carboplatin and taxol) and radiation.  This round of treatment was much more challenging.  Again, I wanted to be as aggressive as possible.  In fact, I've told my oncologist to do whatever it takes.  I had my last radiation in May and my last chemo in July and I'm almost back to my old self.  

As for statistics, don't bother looking at them.  There are many, many wonderful people on this forum who, according to statistics, should be dead years ago.  Statistics are just numbers that don't account for your age, your overall health, etc.  

Keep us posted on your progress.

[Tom Galli]

Welcome here Kathy,

I've had a total of 18 infusions of Taxol and Carboplatin.  Like Susan, each infusion was administered in a three-week cycle.  My chief side-effect was joint pain (of course I lost my hair) and it was very difficult to deal with for about 3 days every three weeks.  Three bad days every 21 days, but, it worked.  After each cycle of six infusions, tumors disappeared.  I benefited from significant extensions of life.

In the nearly 14 years of surviving a lung cancer diagnosis, I've done an extensive amount of research.  I'm also fortunate to have a wife with a masters degree in dietetics and she's done a lot of research.  Neither of us could find peer reviewed literature in any respected medical or microbiology journal that suggests diet, juicing, organics-based diet, or GMO has any effect on any cancer, including lung cancer.  In fact, we found a lot of mis-information and sales literature aimed at cancer patients because we are such a "insult to injury" lucrative target.  Here and here are essays I've written about alternative cancer therapies and nutrition based "cures." There is benefit for improving one's diet, but the benefit does not extend to stopping or killing cancer.  

I completely understand your analogy about misery before death but in between, for most, comes extended life.  One of the real, recognized benefit from chemotherapy is extended life. Many on this forum are in the NED (no evidence of disease) zone because of chemotherapy, alone.  Some receive chemotherapy for years because it keeps knocking back tumors and adding to the extended life, thus treating lung cancer as a chronic disease like diabetes.  One lady I know well has been receiving Taxol and Carboplatin (one infusion every three weeks) for an 18 week treatment cycle every year for the last 10 years. 

I really wish there was something better as a treatment alternative. You might read The Emperor of All Maladies by Siddhartha Mukherjee.  In this "biography" of cancer, Mukherjee describes the problem of killing cancer, our body cells run amuck, with chemicals as so difficult it is "like finding some agent that will dissolve away the left ear and leave the right ear unharmed." Indeed, that difficulty is precisely why we experience side-effects from chemotherapy -- cancer cells are of our own bodies.  I note you are awaiting biopsy results on your adenocarcinoma lung cancer that might show a response to one of the several new targeted therapies emerging from research. If your results indicate suitability for targeted therapy, you might receive a very effective drug that doesn't need to dissolve the left ear and leave the right unharmed to kill cancer.  There may be side effects, but their are much improved results.

More questions?  This is the place.

Stay the course.

Tom

[BridgetO]

Hi Kathy,

I had a stage 1A  lung adenocacinoma. I had a lobectomy and no furtther treatment was recommended. However, I previously had a stage 3, rare type of cervical cancer with a "dismal prognosis" (whatever that means). For that one  I had concurrent chemo and radiation and then, based on a second opinion, some additional chemo.  None of it was pleasant. I had side effects, including some that are permanent. I don't regret my treatment decisions, though, because today, more than 6 years later, I'm ALIVE (yay!) and no evidence of disase (double yay!). 

Chemo is indeed scary. it's essentially a poison intented to kill off the cancer without killing us. In my case it worked, and I'm grateful. My quality of life if good today, I'm  still able to travel (one of my great joys), I walk  a lot and I feel well. (BTW, I'm 72)

As to alternative medicine, I'm a believer in it as an adjunct to conventional treatment, not as a substitute. During and for a time after my treatments, I had frequent acupuncture , which seemed to me to help with side effects. I also took some supplements and made some dietary changes on the advice of a naturopath. Don't know if it helped with the cancer, but in any event I'm in much better physical shape than  I was pre-cancer. 

We each have to make our own treatment decisions. In my case, It's been to throw everything at the cancer.  I wish there was something gentler that worked, but I don't think there is.

Keep us posted.

Bridget O

[LexieCat]

Hi, Kathy,

My situation is quite a bit different from yours, but I had to make a decision, too.  Although my surgeon was convinced that my cancer (adenocarcinoma, caught by screening) was Stage 1a, the pathologist concluded it was stage 1b, based on his belief that the tumor had invaded the pleura.  After a whole big debate at the the tumor board, the pathologist "won," so it was staged 1b.  Interestingly, my stage is apparently about the only one without a clear-cut recommendation for further treatment.  Chemo is never recommended for 1a, since it's actually been shown to result in worse outcomes than surveillance alone, and with stage 2 or greater there is always a recommendation for either chemo or radiation.  But for my stage, ehhhh, nobody really knows what's best.  My oncologist laid out all the options, and given the relatively small likelihood chemo would increase my chances of survival or avoiding a recurrence, I chose to pass on the chemo.  I'm pretty comfortable with that decision, but there's really no way to know for sure whether I would have been better off with the chemo.  But I'm pretty sure that if there were a strong, clear-cut indication that the chemo would be of positive benefit in terms of survival or avoiding a recurrence, I probably would have gone for it.

I get your point (as I think we all do) that when faced with a highly aggressive cancer then there is sometimes a point at which quality of life takes precedence over extension of life.  But right now it doesn't sound to me like you have enough information to conclude it's only going to be "misery before death."  Remember, you can always stop later if that's what seems appropriate.  But if you make the decision not to pursue treatment too soon you might really be shortchanging yourself and your chances for many, many healthy years to come.  

It is, indeed, a very personal decision, but that's how I tend to think about it.

Teri