The Colon Club

I often wonder why there isn’t more similarities when it comes to treatment across the board. Even with CCR after chemo rad I opted for the permanent colostomy (proved to be PCR) and then went on to have 8 treatments of Folfox, removing oxaliplatin after 4 cycles due to being extremely sick. Why not push the extra round of chemo just to be sure?! Believe me, I know how awful it is, but 4-6 months of hell could also greatly change the outcome of your specific disease, right? I’m obviously not much of a risk taker, I was offered W&W but that road wasn’t for me. I applaud you guys! Prayers for long, happy, healthy lives.

My surgeon told me that how we treat rectal cancer will change a lot in 3,4 years.
I agree there should be more standarised approach, but right now is hit and miss, pretty much luck.
There is huge study/trial right now about W&W in North America, we shall see results in few years.
CCR, PCR, surgery, no surgery, chemo, no chemo, there is no guaranty in this bussiness, some choices give us better piece of mind.
Radiation is what kills cancer, how they focus beam plays major role in that inital treatment, at least in my opinion.
After that chemo comes, there are some studies, when only 3 rounds of folfox given after chemo/rad, spaced by 3 weeks, cCR goes from current 25,30% to over 50%

Radiation peak time is about 15-17 weeks from initiation of therapy.
So if we start chemo somwhere around that time, there is big chance, one could be curred.

cCR doesnt mean pCR, we all know that, there is no other way to prove pCR, unless surgery, at present time.
I was told by surgeon, even when cancer reccurance, takes years to grow back, and we can always do low anterior resection.

Right now I would like to find out how did it happen, to remove that risk.

Some interesting pCR(pathological complete response-after surgery) studies:

“The patients in group 2–4 received additional 2, 4, or 6 cycles of mFOLFOX6. A comparison between patients who received 6 cycles of mFOLFOX6 and those who received the standard neoadjuvant CRT showed a significant difference in pCR rate (38% vs. 18%, P = 0.011). This strategy is being tested in phase III clinical trials.”

“Mohiuddin et al50 reported that even in fixed rectal cancers, continuous infusion of 5-FU and a preoperative radiation dose of 5500 cGy or higher could achieve a pCR rate of 44%. Further analysis demonstrated that in patients treated with high-dose radiation greater than 5500 cGy, a significantly higher pCR (67%) was observed in patients who received continuous venous infusion, but none of the patients with bolus 5-FU achieved pCR (P = 0.017)”

“In a recent study reported by Schrag et al,51 8 (25%) of 32 patients with clinical stage II to III rectal cancer who received 6 cycles of FOLFOX (5-FU, leucovorin, and oxaliplatin) with bevacizumab achieved pCR.”

Link:

https://www.sciencedirect.com/science/a ... 2X16300299

This studies show importance of extra chemo, after chemo/rad.

Trial, chemo before chemo/rad, chemo after chemo/rad, we shall see result's before the end of this year. Will be interesting. We have result's chemo/rad than 6 rounds of Folfox. In this trial they are giving 8 rounds of Folfox or 6 rounds of CapeOX.
Wonder if anybody on this board is part of that trial?

https://clinicaltrials.gov/ct2/show/NCT ... val&rank=1

mozart13 wrote:Just had MRI and colonoscopy this week. All negative.
It’s been year since I finished chemo/rad.
Not sure if that made much difference, but when they did radiation year ago, they focused on lymph nodes, and nailed it!

Mozart, congrats on your continued NED, and thanks for posting all the interesting research links!

I visited with my surgeon last week and mentioned we had seen recurrences with some W&W patients who didn't have mop-up chemo. She said there is data to show that recurrence rates are indeed higher for those who don't have the chemo, she said there is a lot of activity on the W&W website but only Drs can see it. She also said studies have shown that patients who undergo surgery but elect not do do the chemo also have higher recurrence rates. I believe this means that, no matter the treatment, for rectal cancer patients, a course of chemotherapy will definitely reduce your odds of a recurrence!!!

The reason I had an appointment with my surgeon was that the results of a November MRI were inconclusive, and the expert radiologists were not sure if there had been a significant change in the rectal wall at the former site of my tumor. My surgeon elected to wait a couple of months so that if I did have a recurrence there would be more time for it to show itself.

Fortunately I do not have a recurrence it seems the scar tissue at the tumor site is softening, in fact my surgeon said if it wasn't for the fact she had marked the site, she would not have been able to find it. Another MRI turned out negative this time, so all is good!!!

I was also examined by my radiation oncologist who confirmed there was no recurrence. He also pulled up the inconclusive MRI on his monitor and showed me how it worked. The screen shows a cross section of your body from front to back, but it's like viewing an old black and white movie with all the various organs and bones being different shades of grey. The Dr can then scroll up and down the body vertically and see how the various organ walls etc change. I can see why they need experts to interpret the images, I was lost almost immediately.

I'm not certain but I think they may have upwards of twenty patients on W&W at this Kaiser facility, so it's just a matter of time before results become available. From other studies I've seen they need five year survivor rates for the studies to be meaningful. I just thank my lucky stars every day that I was fortunate enough to be included in the program and treated by such an outstanding group of professional and caring Doctors.

Mozart, congrats on your continued NED, and thanks for posting all the interesting research links!

You wellcome.
That is great news prs, the further we get from initial response , life will be easier. First couple of years are most critical.
You are right about chemo, most likley down the road, it will become standard treatment after chemo/rad.
Chemo is not easy as it is, never mind after the surgery.

You guys are crazy. Playing Russian Roulette with your lives. I understand if you are Stage 1 and Maybe Stage 2 to see and wait but now we are getting people with Stage 3 and some with lymph node involvement really? Whats next stage 4 watch and wait?

I must say in my limited knowledge of this disease
(2 months)
I'd have to agree with Rickker20 on this one
While I can see the advantage of chemotherapy directly after chemo/radiation then reassess surgical procedure, and possibly reconnect after resection in one prosceedure
Or maybe less avasive resection !!!!!!
The W&W situation I would personally not be able to sleep at night with
Only a personal opinion ( especially later stage cancers)
Adele

rickker20 wrote:You guys are crazy. Playing Russian Roulette with your lives. I understand if you are Stage 1 and Maybe Stage 2 to see and wait but now we are getting people with Stage 3 and some with lymph node involvement really? Whats next stage 4 watch and wait?

rikker, of course everyone is entitled to their opinion, but have you read thru this thread from the very beginning? If so, you will know that yours is not based on fact

Per the below I was dx’d t3,n1,m0. After six rounds of folfox I was t0,n0,m0 - path complete response. Only one datapoint, sure, but there may be some changes on the horizon if the data is good.

While I opted against w/w (even though I had a complete clinical response, and my pathology showed a pCr as well), I do feel it is certainly a valid option for those wishing to avoid LARS or a permanent stoma. I am happy with my decision, as I'm a belt plus suspenders kind of guy, and being an ostomate doesn't limit me in the least...but I put a lot of thought into this (I had 8 months to mull it over as I elected to have 8 cycles of neoadjuvant FOLFOX first followed by 6 weeks of chemoradiation.

rickker20 wrote:You guys are crazy. Playing Russian Roulette with your lives. I understand if you are Stage 1 and Maybe Stage 2 to see and wait but now we are getting people with Stage 3 and some with lymph node involvement really? Whats next stage 4 watch and wait?

Interesting study on early stage 1 rectal cancer, as most studies are done on higher stages.
Stage 1 is most of the time treated surgically only.
Early stage 1 (T1-T2,N0) , when treated with chemo/rad, cCR is 40-50%.

Page 10/46
https://www2.sahlgrenska.se/upload/SU/H ... pendix.pdf

Total neoadjuvant therapy or TNT is the term for chemo/rad than chemo.

It looks like this is becoming standard approach:
https://jamanetwork.com/journals/jamaon ... irect=true

Anyone gone this route? Watch and wait? If so what was your stage?
What was the treatment order?
And where did you find a team to agree to do it?
Just diagnosed a couple of months ago and getting ready to start treatment. T3 N1 M0

Ive similar staging cat woman, and between neoajuvant and surgery now but gona suggest to my oncologist maybe chemo before surgery to see if it will reduce tumor any further before surgery,
Im anxious atm as im taking nothing
Im wed for colonoscopy and scan to see how radiation worked
ADELE