No Chemo For Me

I don't want to sound like the voice of doom, my intention is always to give hope, however I'm not sure I'm comfortable with what you're doing. I'll tell you why. 

One is because it's surprising how often we hear about people who are staged one or two and who have very little in the way of treatment beyond just surgery and then it goes south for them in the future. I, personally, believe that they don't hit lower stqged cancer hard enough. Maybe some will disagree with me but I find it scary and I think you should really get the stats before you make that decision.

Two is that I didn't want to do mop up chemo because I'd read so much about the ineffectiveness and things like that. I did do it but not in the time frame it should have been done and my cancer has spread and I can't help but wonder if that's why. And if I hadn't done it I'd be kicking myself because I hadn't and would be convinced that's why it's back. There is a member on here who is very much against chemo and who, I beleive, refused it, who has now not been on for some time and we're all worried about him and suspect things are not going well as he was quite active on here before. He did a lot of research and felt that he was right not to do it and his write ups were very compelling.

There is another member on here who has a blog that he says tells how he beat stage four but it really just outlines how he did whatever the doctors said. I realize that your doctor isn't suggesting chemo but it worries me not to do it.

My feeling is that you give it your best fight and then you'll have no regrets if it recurrs. If it does anyway you know you did the best you could, if it doesn't you'll never know if you needed it or not. This is coming from someone who was really trying to find any excuse not to do the chemo after the surgery. I did not want to do it. No way. But now I'm glad I did.  

Please know that the last thing I'd want anyone to do is go through chemo for no reason. It's not fun although some are easier to take than others. Someone will likely come inwith a completely different view and you have to do what's best for you.

Good luck with your decision.

Jan

Hi and welcome. Just to give you my experience, as a stage 3b I did the standard chemo, Folfox[now they add Avastin too it seems].  I did the full treatment and still had it pop up in my liver. Twice, The onc/surgeon when asked about it, said it didn't work, and there was little point in doing it again, with the higher risk of permanent neuropathy as the kicker. Was your tumor really 3mm or 3cm? If the worst happens and something pops up, they would certainly be pushing chemo after getting the met out, but lots of people [including my dad] are stage 2, get the surgery and that's it. My pop never had an issue, I wish I knew his CEA scores after, since that might give you some peace of mind as well, but my pop is the example you wanted, and he was 79 at the time of surgery. He lived another 9 years and passed of unrelated stuff..............................................................Dave

I would definitely repeat the CEA test sooner, and monthly. That much rise is risky. We add CA19-9, LDH, ESR and hsCRP to better track and assess the situation.   The possibility of a slow growing met is one thing. 1-2 isolated met sites might even be curatively resected.   One that metstasizes further is where decisive actions sooner  are important.

Also we chose a nonstanard, less unpleasant immunochemo approach to deal with the chemo issue, more effectively for mCRC as it turned out for us.   

I myself didn't want to undergo chemo at first but my stage is 3B so its quite advanced that not going through chemo might pose a big risk for me.  However, in your case, hmmm...if I were diagnosed stage 2 and my surgeon assured me that he did a perfect job, I might not.  But why not try chemo just for a few sessions, just to be sure? I don't really have much valuable input but I understand where you're coming from.  Its hard to decide.  Good luck.  And if you're a believer, pray for guidance that you'll be guided in whatever decision you make.

I was stage 2B which is high risk so did 3 months of xeloda. I tolerated it quite well. First scan after surgery they found lymph node metastasis.....next 2 scans I have been ned. My onc thinks the xeloda did it. My advice would be to do that as for me it was fairly easy. Good luck in your decision. 

I'd get a second opinion...

SandiaBuddy said:

Xeloda

Sandy:  That is encouraging.  What dose of Xeloda were you taking?

I was taking 3000 a day.....two weeks on and one week off for 3 treatments. When they found metastasis they advised me  to have irinnotican also. That one chemo put me in the cancer clinic for three weeks last August. The xeloda (capecetabine) just made me tired. No chemo since. Onc says if needed will try xeloda and avastin next time.

i did not have clear margins.

You should do what you feel is best.  My husband was diagnosed in December 2012 with Stage 2 colon cancer, he was 59. He had had 4 colonoscopies in his 50s where no cancerous or pre-cancerous polyps were found.  He did have several polpys each time, that's why he was on the 2 year cycle.  After his hemi-colectomy, he did 12 rounds of Folfox based on his oncologist's recommendation and prompting by me and our daughter who is a nurse.  Within 3 months his cancer returned in his small intestines and 2 lymph nodes.  I think the chemo kept his cancer on hold and as soon as he stopped, the cancer started to grow again.  Also, both times he had a tumor growing, his CEA went down, so CEA was not an indicator for him.  He was brushed off and not treated well by his surgeon, oncologist, PCP, even the GI doctor.  He ended up in the ER in January of 2014 with the blockage in his small intestines and was actually admitted and treated for "constipation" for 7 days.  Don't get me started on that terrible hospital he was in.  We switched cancer centers where he started Folfiri in March of 2014.  He did not tolerate it very well and developed several other health issues.  Chemo stopped in September and he passed away in November. 

I'm not trying to scare you, but every person is different and has different outcomes from surgery, chemo, radiation.  I would recommend going to the best cancer center you have access to for a 2nd opinion if you haven't already.  After reading through his medical records, both our daughter and I felt he had an aggressive, fast growing cancer that he would probably never have been able to be rid of.  Along with poor inept care for a year and a half, things may have turned out differently for him, but only God knows that.  Do what you feel is best

Linda

Hello Maryloo!

I just wanted to jump in and thoroughly support your decision, whichever way you decide. However, I'm a HUGE opponent of chemo. Yes, it has helped some people, and for others it's worked for a time, then stopped working; placing them on the chemo-to-chemo rollercoaster until a chemo related illness or the cancer takes them.  

I did chemo-rads in the beginning and I'll never regret that, even though I suffer from permanent disability as a result. If I knew what I know now, I never would've done chemo. My cancer spread just after I finished the adjuvant chemo, and I swore I'd never do it again. I did extensive research and I learned there were much better and easier ways to go about it.

Over the past ten years I've had four-five recurrences that I treated with surgery and/or diet alone. The last metastasis (2015), I treated with diet only, since I wasn't a candidate for surgery.  Five weeks of a raw, organic, plant-based diet, and it went away on its own.

A strictly clean diet CAN kill cancer, and it does a much better job of it than chemo for many, many reasons.

I'm vegan now and continue to be NED. August 2nd is my 10 year cancerversary and I have absolutely no fear of cancer anymore. If it dares to come back, I know how to step up the game and get rid of it. Don't be afraid to go in another direction from the norm. Just do your research. There's tons of good-quality information out there about it.

Good luck!

Krista

bobby66 said:

Im sorry to ask, but do you

Im sorry to ask, but do you mind explaining what did you do or still do to kill cancer? you stated that you treated the last metastasis with diet only. Please explain. Thank you 

I thought I mentioned it! I did 98% raw food. The only things I had that weren't 100% raw were sprouted bread and vegenaise. I'm uncertain if other diets would work as well; though a (healthy) vegan diet is good for prevention. I say healthy vegan diet because there are nearly as many ways to be a junk-food vegan as there are to be a junk-food omnivore/carnivore.