The Colon Club

I had a right hemicolectomy because of a large invasive tumor and have had 3 rounds of adjuvent folfox. (Staged at IIIC).

I do not like chemotherapy and want to cut it off and am wondering if I do, how effective the 3 rounds would be. I was supposed to do 12, but after looking at many studies and stats, convinced myself that it was not worth it to me to endure an additional 3 months for a 2% gain in possible survival. At any rate, I know that cutting it from 12 to 6 does not cut the efficacy in half, but only by a very small percentage. So I'm wondering how much I am losing if I cut it from 6 infusions to just 3.

Also, if I decide to go on with 3 more infusions, is there much risk in taking a two week break? I would like to bounce back and feel strong and not feel so susceptible to a cold or a flu.

Hello Vincent33,
I remember reading a scientific article that made the point that there was little benefit to doing 6 vs 4 cycles (or 3? I can't remember now). Had we known that Xelox would give my husband permanent neuropathy in his feet, we'd have asked for him to stop after cycle 4 instead of doing all 6.
In terms of taking a two-week break, my husband's onc has always said that it's not a problem. Last summer it happened while we were traveling, and twice he's had to postpone a cycle because of low neutrophils; that had no effect on the efficacy of his treatment overall.

I had a large T4b invasive tumor and had only 4 cycles of Xelox adjuvant therapy. That was 6 years ago.

Thanks JJH. Mine was t4b as well. What did it "invade"? Mine was stuck to my abdominal wall and a section of it had to be cut out. Isn't it better to invade there than an organ?

I presume no recurrence? Why didn't you do more treatments? (How I would love to just walk away right now and then get my port removed!)

I'm very interested in this topic due to my current situation and looking for a little help:

I did 4/8 Tx of FOLFOX (1 w/o oxaliplatin) under a TNT approach for Stage III lower/mid rectal tumor (5 cm), bailed out (with support of 2/3 of my team) to chemorad with an estimated 60-75% response. I had suffered several serious side effects, including massive UE-DVT, arrhythmias (determined after lots of monitoring & testing to be likely benign), neutropenia, low platelets, elevated liver enzymes (e.g., ALT 7x normal)), hospitalized 3 times, etc.. Did 33 Tx IMRT, 60 Gy, concurrent Capecitabine (Xeloda). Added two weeks of Capecitabine before and after the radiation treatments (so 4 extra weeks of 5-FU). Rectal exam at 5 weeks after CRT revealed no evidence of any remaining tumor in the rectum. Will be scanned in mid-April. I will pursue a watch & wait strategy if examination at the end of the interval confirms a cCR.

My dilemma is the following: My team (or at least 2/3 of it), who are fantastic and whom I love, has recommended I try to do the remaining 4 FOLFOX Tx in the interval before assessment and surgery, if necessary. I originally agreed to this, but my blood counts have remained somewhat low after 5 weeks post CRT (most around the bottom of the normal range), and appear to be increasing slowly. I considered it, agreed, but now have delayed due to concerns about heading back into active chemo with the coronavirus pandemic just ramping up. I could try CSF, but of course I would still be immunocompromised for at least some periods and want to avoid that right now.

For now I don't think this picture is too bad, but I don't think I want to skip the remaining 4 Tx entirely if I can help it, and I suspect pandemic conditions may be worse in a month or so when I am assessed and confronted with what may be a more final decision on additional chemo (my understanding is that chemo in the interval is still uncommon, though a promising treatment, but I fear that 3.5/4 cycles of FOLFOX + an extra month of Capecitabine would generally be regarded as undertreatment). Though I have seen that some approaches drop the adjuvant chemo entirely after the achievement of a cCR even without the 4-6 cycles of neoadjuvant treatment I got (4+ a month of Xeloda).

Can anyone provide links to literature on the current thinking on the value of, say, 4 vs. 6 vs. 8 chemo cycles (particularly FOLFOX)? I think the extra Capecitabine probably adds the equivalent of a cycle or two to the picture, but it's very hard for me to balance risk right now, and this is a piece where I just can't find the relevant data/studies (that are referred to in this thread). Thanks for any information/links anyone can provide -- I'm a voracious consumer of the stuff, but I just can't locate good material on this particular subject. Thanks!

roadrunner wrote:...Can anyone provide links to literature on the current thinking on the value of, say, 4 vs. 6 vs. 8 chemo cycles (particularly FOLFOX)? ...Thanks for any information/links anyone can provide -- I'm a voracious consumer of the stuff, but I just can't locate good material on this particular subject. Thanks!

You can try an Internet search for recent studies that refer back to the original "IDEA collaboration".

IDEA (International Duration Evaluation of Adjuvant chemotherapy) collaboration

Each person is different..each case is different....and each chemo treatment and number are different. I can only say that I did all 12 cycles and would do it all again if I had to. I discussed each side effect..duration and associated disability. ie. neuropathy. The oncologist gave me the option of stopping after 11, but with my side effects being what they were, I decided to do them all. This does not mean that you need to do 12 or should. Only you and your oncologist should decide that after consultation about all of the effects of your chemo treatment. Best of luck to you.

ANDREATEXAS, Thanks for your post. Did you or do you now have any problems with neuropathy?

I must first predicate my answer by saying that I am Type Ii diabetic and have been taking oral meds for it for 10 years. I exercised very day during my treatments by walking 2-3 miles as I did before chemo. I still do to this day. After chemo, I had neuropathy in my fingers and my feet. The neuropathy in my fingers ended about 12-18 months after I finished chemo, The main side effect is that I was having trouble with buttons and cuff links. The neoropathy in my feet, six years later, is slightly more than it was when I started chemo, but it's primarily in my toes and not the rest of my foot. I'm use to it for the most part, but I have continued to walk which has helped. I guess one's pain tolerance is also a factor as some have more than others. It's really important to factor everything into making a wise decision for yourself after you have information. I'm sure you and your doctors will make the right decision for yourself. Prayers sent. Andre

I was supposed to do all of my treatment neoadjuvantly as well. I also only made it 4 rounds of FOLFOX which ended in a hospital stay with toxicity. I had no tumor or cancer cells in my rectum after the 4 rounds so I went straight into radiation with xeloda. After radiation I got a lower anterior resection and pathology was all negative except some viable cells in a node. I chose to do 3 rounds of CAPOX after surgery because of that positive node.

Hi all,

Based on everything I’ve learned and read, my advice would be this: do as much of the established NCCN adjuvant chemo protocol as you can safely tolerate.

The reason for this is that this is the regime on which we have the best efficacy data. It is possible that 6 rounds (or even 3 rounds) may not be far below it in effectiveness, but the quality of quantity of evidence to establish this with confidence this is still limited. Given the stakes here, this is probably not the time to roll the dice.

Now an important distinction. No-one “likes” doing chemo. It’s objectively unpleasant. If your concern about continuing is that you find the process too hard then I would encourage you to talk to your oncologist, nurses, or integrated onc about ways to make it more tolerable. There is a lot you can do - dose reductions, more premedications, CBD/THC, anti-anxiety meds, exercise, fasting, counselling, etc. These may mean you can make it through the complete protocol.

However many other people have serious life-threatening or life-limiting side effects with chemo. This is not the time to “toughen up” and push through, for the additional rounds may not be worth it for the implications on your quality or quantity of life. This is a discussion only your oncologist and you can really have. But if you decide on a reduced protocol because of serious side effects or complications, you can take comfort in the stats that suggest you may not be significantly worse off.

Good luck,
Rob

vincent33 wrote:...What did it "invade"? ...

My T4b rectal tumor invaded the sigmoid colon, vas deferens, seminal vesical and one prostate lobe.

vincent33 wrote:... I presume no recurrence? Why didn't you do more treatments?

My oncologist refused to prescribe any more chemo beyond cycle 4 because of my poor overall health at the time. He was sure that I would die if I were given more chemo. I was on TPN (Total Parenteral Nutrition) at the time, with all of my food, water, and medications being administered via various tubes. This "chemo break" has now lasted more than seven years.

Who does like chemo? To be honest, I hated chemo with a passion...every minute of it and the ghastly side affects that I encountered. However, I was determined to do my 12 treatments even after the first when I wondered how I would ever manage. It’s up to you with whatever you decide to do. I was terrified of it coming back, and even though there was no guarantee that it wouldn’t after having 12 treatments, I wanted to give myself the best chance. If it came back, and I didn’t have the full recommended 12 treatments, I would have blamed myself and be full of regret. But that’s just me. Good luck.

I decided to just take a break and regroup. I canceled my treatment for tomorrow and will resume in 2 weeks. However, I still do not see myself doing 12 vs 6 (or possibly 7 or . To me the tiny extra benefit is not worth the risk of the side effects. In spite of all the shut downs and concerns about the corona virus, I'm going to try to enjoy my chemo vacation and having about 17 normal days ahead of me.

Thank you for updating your decision. I am following you on this just in case I need to make a decision as I go along with chemo