The Colon Club

benben wrote:I talked with my assistant ONC today. She is actually my ONC's assistant. He wasn't out of office.
I asked and she said "oh no, he's here - just in the other room with another patient. We trade off sometimes."
I was a bit peaved as I was discussing low blood count with his assistant rather than him. I also brought up this study.
She smiled and said that she had indeed heard of it and had just met with one of the authors of the study yesterday.
Supposedly she said the studies are good mostly for stage II and Stage III with no lymph involvement. She said
they would still push aggressively for 12 treatments with stage IIIb and C.

I knew of the study when they were recruiting. I did three months as opposed to six when I read the research that supported the need for the study in the first place. My onc was good with it. The study cites stage 3 with lymph node involvement as being good. 3B being much better compared to the spread in c

TXLiz wrote:I am of 2 minds about this.

3 months sounds great! Easy!

However, I picture microscopic cancer cells slinking about my body and want them dead. I want their families dead. I want their pets dead.

Interesting article. I feel the same way.

Tdubz wrote:This is very interesting. It sure would be awesome to say I'm half way done instead of a quarter done. Is a lifetime of neuropathy worth a 1% difference? Especially for those of us on the younger side? Tough call. I get my genetic test back in 4 weeks. Maybe that would be a good time to discuss this further with my onc.

Edit to add:

At the bottom of the article, it says for folfox users, the difference was slightly larger, 73.6 vs 76.0%. That a 2.4% difference instead of the one percent mentioned at the top of the article. (If I'm understanding the article correctly)

I saw an elderly man today while getting my infusion who couldn't walk because of the neuropathy in his feet. Is that the life I see for myself at 37? No. But at the same time I want to be alive for as long as this old man was.

Just to clarify everyone reacts differently. I told my oncologist when I started having neuropathy and he dialed back my dosage. I am very lucky and have zero issues with it today.

Thank you for sharing Maia

Good news for lots of folks here on ColonTalk.

Thanks again Maia!

It's great news for stage II and III but we are still missing answers on several points.

Basically the various data imply that some kind of early treatment intensity is more important than duration to kill off the various kinds of cancer (stem) cell/met/cluster/ stragglers for those who can be cured by surgery and finite followup chemo, "adjuvant therapy".

Is Folfox the optimum treatment?
For some patient clusters, it is possible, even likely that some regimen of oral chemo with celecoxib, cimetidine, other (mild) drugs and/or the natural adjuncts would be better still. Some patient clusters might benefit from higher dose xeloda and extra adjuncts, some might benefit from lower side effect versions that can be easily monitored, modulated and extended - mostly those people who recur with the current regimen or were early/crypto-/missed mCRC.

The higher dose Xeloda is much more easily achievable with improved "natural" chemistry...
The Matsumoto(2002) paper's statistics imply that most CA19-9 targeted patients would still do better with cimetidine and metronomic 5FU dosing.

Dear rp1954,

You wrote:
The Matsumoto paper's statistics imply that most CA19-9 targeted patients would still do better with cimetidine and metronomic 5FU dosing.

Do you have a link to that paper Please ?
It is of interest for me/my husband, since his CA19-9 was elevated at diagnose but not his CEA.
Thank you in advance /L

benben wrote:I talked with my assistant ONC today. She is actually my ONC's assistant. He wasn't out of office.
I asked and she said "oh no, he's here - just in the other room with another patient. We trade off sometimes."
I was a bit peaved as I was discussing low blood count with his assistant rather than him. I also brought up this study.
She smiled and said that she had indeed heard of it and had just met with one of the authors of the study yesterday.
Supposedly she said the studies are good mostly for stage II and Stage III with no lymph involvement. She said
they would still push aggressively for 12 treatments with stage IIIb and C.

Hi,

The assistant ONC is not totally correct re stage III w no lymph involvement. Here's a quote from the press release:

"In the subset of patients with lower-risk colon cancer (defined as cancer spread to 1–3 lymph nodes and not completely through the bowel wall), the disease-free survival rate at 3 years was almost identical for those who received 3 (83.1%) and 6 months of chemotherapy (83.3%)."

You may want to bring this up with your ONC.

benben wrote:I'll be talking with my ONC about this Tuesday when I go in for treatment #2.
First one was pretty smooth, only had mild first bite syndrome for about 24 hours, tired day after disconnect - otherwise good to go.
When first discussing with my ONC he suggested I go at least 8 session as that seemed to be the magic number and each session beyond that would decrease chance of recurrence by about 1% each session.
Interesting this study suggests 6 sessions is only 1% more likely to have recurrence than 12 sessions. Definitely something to think about when considering life long Neuropathy.

So what did your Onc say? I talk to mine tomorrow and I'm sure he will want me to finish all 12 rounds.

kfgardella wrote:

benben wrote:I'll be talking with my ONC about this Tuesday when I go in for treatment #2.
First one was pretty smooth, only had mild first bite syndrome for about 24 hours, tired day after disconnect - otherwise good to go.
When first discussing with my ONC he suggested I go at least 8 session as that seemed to be the magic number and each session beyond that would decrease chance of recurrence by about 1% each session.
Interesting this study suggests 6 sessions is only 1% more likely to have recurrence than 12 sessions. Definitely something to think about when considering life long Neuropathy.

So what did your Onc say? I talk to mine tomorrow and I'm sure he will want me to finish all 12 rounds.

I only spoke to the assistant Onc whom stated that she spoke with one of the authors of the article the day prior.
I also noted how she talked about Node involvement being different than the article so figured perhaps she was confusing this article with another study.
I haven't spoken to my ONC directly about it, but will the 20th - my next scheduled treatment. I will actually bring in the printed article and hand it to him and suss out his feelings.
If I were to guess he's going to say I need to go more than 6 as he seems to prefer aggressive treatment. When we were first discussing treatments prior to my consent of treatment he said It's best if
people can go at least 8 sessions. His belief was that 8 seemed to be a good cutoff for getting as close to 12 without recurrence and not having extreme neuropathy that was long lasting.
Of course he thought that dropping Olaxi and continuing with 5FU for the 12 was better. In my case I am stage IIIB with one node involved. Tumor was well defined, but did go all the way to the outer wall with like less than .01mm to exterior.
So based on that alone he'll probably want me to go as long as I can. That said my first treatment was rather non-eventful, but my 2nd treatment was quite tough. I had a lot of extra stress going on with my mother (whom was supposed to be my companion through treatments) left back home. My son got sick and I sent him to live with my brother until he's over his illness as first treatment sent me into neutropenia. So I've been completely alone since disconnect day. I experience much more fatigue than first treatment, along with some nausea, some fevers approaching 100 - but never reaching the critical 100.4. Some mild redness in the belly button and a return of mucus stool with quite a bit of blood. So I did talk with ONC on the phone this morning about the blood/mucus stool - which I've had periodically since LAR was performed. I showed a picture of the bowel movement to the nurse that treated me and she did look concerned, but said the ONC didn't feel too concerned because I didn't exhibit a fever. Aside from all that, I've noticed quite a bit of hair coming out in the shower. I'm not really vain, so the hairloss thing doesn't bother me much. I'm more concerned about the neutropenia and mucus/blood bowel movements. I'm set for Granix shot to boost WBC on 18th and 19th. Got a letter from insurance stating they would grant these 2 doses, but would deny future doses as they have connections with Sandoz that makes Zarxio. UGGh - pharm money games. Today was the first day that I haven't felt really exhausted. Pump disconnect day I came home and worked 8 hours and then literally crashed and slept 24 of the next 30 hours. I felt good the next morning, but by mid day I was back to fatigue. Also on day after infusion I had some first bite, little numbness in fingers, and very minor cold sensitivity. It went away the next day only to return the day after disconnect to a larger degree. I'd really like to do only 6 treatments after treatment 2 and the WBC. Hoping the growth factor works and next treatment isn't any worse than this last one.

Hi,

Just talked to my Onc this morning and he said that he believes 6 treatments (3 months) would be just fine for me. I've already had 7. In my case, he said I straddled the high risk/low risk categories of this study: I had a T4 tumor (with no attachment to any other structures outside the colon) with one lymph node affected. In my Dr.'s opinion, I am more low risk than high risk, therefore he determined that I could stop treatment.

The report states:

"In the subset of patients with lower risk colon cancer (defined as cancer spread to 1-3 lymph nodes and not completely through the bowel wall), the disease-free survival rate at 3 years was almost identical for those who received 3 (83.1%) and 6 months of chemotherapy (83.3%)."

For high risk patients, 3 vs 6 month DFS was something like (I can't remember exactly) 74.6% vs. 76%.

I feel good about the decision I made and am glad to have my Dr.'s approval to quit!!!

i"m wondering - has anyone had their oncologist bring this up and suggest it on their own? I'm guessing most must know of the study.

If you brought it up with your oncologist did they agree to reducing the treatment? Did they support/agree with the study?

What genetic testing are you doing? I did the Oncotype DX and at the suggestion of a naturopath I just did 23andme for the health and ancestry profile. Not sure how that will help but its interesting.

Kobe wrote:i"m wondering - has anyone had their oncologist bring this up and suggest it on their own? I'm guessing most must know of the study.

That's a very good question. One that I've thought about as well. I wonder, if there is concern on the part of cancer treatment centers about the consequences of reduced treatment numbers and the ability to remain solvent in the business.
After all this is all "Business" when it comes down to it, at least in the US. X amount of dollars need to come in to maintain wages of X amount of dollars etc. If you are reducing the standard treatment number by 50%, does this mean 50% loss in revenue per patient? If so how does this effect the bottom line? If this is a concern, then I'd venture to guess - no you won't find many ONC's suggesting reduction to 6 treatments - especially if the patient seems capable of receiving further treatment. If the 6 treatment policy becomes the new "Standard" of therapy, then well, yes everyone would then resume that course of treatment as opposed to the current standard of 12 treatments.

benben wrote:

Kobe wrote:i"m wondering - has anyone had their oncologist bring this up and suggest it on their own? I'm guessing most must know of the study.

That's a very good question. One that I've thought about as well. I wonder, if there is concern on the part of cancer treatment centers about the consequences of reduced treatment numbers and the ability to remain solvent in the business.
After all this is all "Business" when it comes down to it, at least in the US. X amount of dollars need to come in to maintain wages of X amount of dollars etc. If you are reducing the standard treatment number by 50%, does this mean 50% loss in revenue per patient? If so how does this effect the bottom line? If this is a concern, then I'd venture to guess - no you won't find many ONC's suggesting reduction to 6 treatments - especially if the patient seems capable of receiving further treatment. If the 6 treatment policy becomes the new "Standard" of therapy, then well, yes everyone would then resume that course of treatment as opposed to the current standard of 12 treatments.

There is no simple equation. The standard treatment used to be 24 months, and now down to 6 months. Did the medical trend decrease during that period? I don't think so.

Kobe wrote:
I just did 23andme for the health and ancestry profile. Not sure how that will help but its interesting.

We happened to have a test at home (I had previously ordered 2 ( for us both) but at that time hubby was not interested..) but when DH was diagnosed he agreed and did the 23andme test.
Getting his result helped me check SNPs that could mean that he would react badly to chemo, the 5-FU for example. Not all important SNPs was in the report but some were.