Chemo treatment woes....

[PainInTheAss]

Hi PITA,
This is interesting, and valuable to many Colon Clubbers. Do you have a link to a medical study where this was validated?
Thanks,
peanut[/quote]

Not anymore, but I did find some when I was going through chemo just by googling.They seem to continually do trials with fewer rounds, but it takes years to get the results and even longer for the data to be widely accepted. Many Oncs are still doing 12 rounds. I found it very interesting to learn that many studies will include patients who only did one round in the stats. Eventually, standard treatment may only be one round.[/quote]

I've heard of patients being recruited for trials where 6 rounds of FOLFOX are being tested to see if it is as effective as 12 rounds. Haven't seen any results.

Did find this, which seems to be a current, reputable, published trial.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4980863/

Conclusion from trial...
Cycle number of adjuvant FOLFOX is a significant prognostic factor for stage III colon cancer patients. At least 8 cycles are needed to have an overall survival benefit, and 7 to disease-free survival.

That's quite a bit different than you're saying. If you have different information, I'd be interested in seeing it.

peanut[/quote]

I'll ask my Oncologist the next time I see him. He is in a cancer center that is always up on the latest trial stats. Like I said, I've seen others who have done fewer rounds than 6 since I did my chemo.

[rp1954]

I would think carefully about abandoning all 5FU treatment too soon.

There are a number of alternative adjuncts that may greatly extend the performance of daily capecitabine or other oral 5FU drugs (outside the US) without the disability and side effects. My wife has been on chemo plus alternatives for over 6.5 years without the debilities and disabilities of Folfox or Folfiri. She played the piano this morning while doing an IV vitamin C drip.

Although less chemo is better for those who have been cured and don't recur, prediction and monitoring are very imperfect arts with standard medicine.

[PainInTheAss]

I've heard of patients being recruited for trials where 6 rounds of FOLFOX are being tested to see if it is as effective as 12 rounds. Haven't seen any results.

Did find this, which seems to be a current, reputable, published trial.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4980863/

Conclusion from trial...
Cycle number of adjuvant FOLFOX is a significant prognostic factor for stage III colon cancer patients. At least 8 cycles are needed to have an overall survival benefit, and 7 to disease-free survival.

That's quite a bit different than you're saying. If you have different information, I'd be interested in seeing it.

peanut

I'll ask my Oncologist the next time I see him. He is in a cancer center that is always up on the latest trial stats. Like I said, I've seen others who have done fewer rounds than 6 since I did my chemo.

I scanned this report and it was only a few hundred patients from 2005 to 2012. This report also said that there other trials with 6 and 4 cycles being compared to 8 tsll waiting on results.I did chemo in 2014 and did 6 cycles and I saw others in 2015 doing less than 6. There are often many trials and the results are aggregated. Some trials include stage Ii patients, which screws the results a bit. Some include patients who didn't complete all of the rounds and some don't. Regardless, there would never be one trial that is the be all and end all as far as treatment protocols.

[TXLiz]

TXLiz wrote:
My neuropathy never really leaves now, in my hands, fingers, and feet. I have been getting "electric shocks" in my feet and legs. It's annoying and makes me feel crazy but I have to fight this.

Can I ask - What do you mean when you say: you "have to fight this"?
Do you mean you have to have 'no reduktion' in your next/last chemo - that you have to accept the neuropathy?
Have you told your oncologist that you are having these side effects?
I thought it was important to lower (or stop) Oxilaplatin if you get neuropathy ?
Please forgive me if I misunderstand.
All the best to You ! /LPL

I meant I have to fight this cancer, even if the chemo makes me feel bad.

I saw my onc yesterday, and did and have informed him of my symptoms.

My symptoms are bad after infusion and the 2 day pump, but then slowly go down to annoying.

I am actually ecstatic because I can drink without throat neuropathy...that was my biggest issue.

My fingertips are slightly numb, and only get bad when I handle cold stuff.

I have mild shocks in my ankles and legs, but they come and go.

Onc said if anything interfered with my functioning is when he'd be concerned. I only have one remaining treatment anyway.

Hope that answered your questions! All my best to you and yours. Thank you for being concerned for me.

[LPL]

TXLiz,
Thank you for explaining to me.
It sound very good that your

symptoms are bad after infusion and the 2 day pump, but then slowly go down to annoying.

It was when my husbands symptoms of neuropathy stayed/was still there (when he came for the next chemo) that the onc first reduced the Oxi by 50% for 2 sessions and then took it away completely.
All the best to You ! /LPL

[dbrr]

I am one of those who has been in despair since my chemo with oxaliplatin ended in Nov 2010. I still find that warm liquids are more comfortable to drink than cold, the tinnitus is outrageously loud, my feet drive me nuts all day every day and wake me many times each night, and the pain continues halfway up my legs. My hands aren't right and I have dropped three cameras with lenses attached, and my lips and mouth still do not feel right. The cataracts, new arrivals post-chemo, were repaired, and as a photographer, I was excited not to need glasses any more, except for reading. Chemo's only blessing! I hate walking, but before chemo and after the surgery I walked three or four miles a day and enjoyed it.

I am one of those who has wished all along that I had had the courage to say no more chemo, but others in my life, who I care about, kept at me to continue, and I caved in to their well-meaning, but misguided wishes. My wife tells me now that she wishes she had not tried to sway my opinion. Perhaps if the surgery, Stage 3A with only one lymph node, hadn't been successful and the cancer returned I'd be angry at myself for having quit chemo, but now a day does not go by when I do not regret my choice.

It's impossible. You can never be right in making a decision like this. You're damned either way. You don't know if you need the chemo, or if you don't, and you have no way of knowing if the side effects will hammer you for the rest of your life. My oncologist lied to me and said everything would be temporary. I resent her dishonesty.

I have a new oncologist now, a great guy who listens, who is trying to nail down the MGUS, unrelenting exhaustion and peculiar blood readings. I had a bone marrow biopsy 10 days ago and based on its incomplete results (two weeks for results usually) he ordered a full body bone survey which shows some skeletal abnormalities and now a new opacity on one lung. I will be seeing him next week after all the marrow results are in. At least he is willing to admit that chemo can cause other cancers. He is the first doctor I have had who understands that it is ok not to love the life that chemo gave me and that some people are better off to follow their instincts and take control of their lives, right or wrong.

Not to say you should take what I have to say seriously for your own situation, but there are a few people out there who struggle each day with the aftermath of chemo. It is a difficult, complicated issue, and I firmly believe that for some there is no right answer and no certainty.

Best wishes for making this wrenching decision.