The Colon Club

Few months back I met someone who is been cancer free x14 years, had surgery, chem/rad than chemo.
W&W approach is not bad idea, it works in small percentage of people, some people get it back after short period.
75% of cancers come back within 2 years if treated only surgiclly.
My chemo/rad killed my cancer, I am going for laparoscopic LAR, will have 12 rounds of folfox after, than reversal of temp. bag.
I want that thing out of me, including all the tissue involved, we don't have tools at our disposal to pick up micro cells yet.
I wonder if any one has evidence on long term survival when it comes W&W, like 15 or 20 years results.

Ronjay,

Did you change your diet? Or did you continue to eat the same as you usually did?

Not sure which way to go.
Just got back from scope, only scar left from tumor that was size of golf ball.
Surgeon that did the scope is suggesting w&w approach, I am for it 75%, will have another mri next week to make sure no lymph nodes are involved.
Thx

I've recently been reluctant to post in this thread because I feel like I won the lottery compared to the pain and suffering other brave souls on this board are going thru. I hope it doesn't seem like I'm bragging about my good fortune, but I do feel I have a responsibility to recount my experiences because others may be able to similarly benefit.

Last week was the two year anniversary of the beginning of my radiation treatment, and in another couple of months, touch wood, I'll be two years NED. I understand the risk of recurrence decreases over time, and decreases significantly after two years (I sure as heck hope I'm not jinxing myself by saying this!!!)

Mozart13, if you do decide to go w&w I would encourage you, and particularly after Ronjay's unfortunate experience, to start a six month course of Folfox or Xelox asap. It will not be easy, in fact I would say those six months were perhaps the most miserable period of my entire life. There was a time towards the end of the third cycle that I became a human fire hose at both ends. I was tempted to quit right there and then but, in retrospect, it was all worth it. My body has recovered from the neuorpathy, fatigue, loss of taste buds, cold sensitivity, body rash, etc etc, and I'm almost back to were I was before diagnosis. I'm so glad I was given the opportunity to go w&w, but of course everybody has to weigh their particular situation, and make their own decision.

Rikimaroo wrote:Ronjay,

Did you change your diet? Or did you continue to eat the same as you usually did?

Hi Rikimaroo,
I just kept to my usual diet as I was not told to change it. I am booked in for an LAR on 11th May. Surgeon said I will have a Temporary stoma. I assume I will have chemo tablets (Xelox), if any cells are found in Lymph nodes.

Made my dessicion, will go for W&W, going to see my oncologist this week, would like to start folfox asap.
Had mri and scope couple of weeks ago, negative, surgeon is pushing for W&W, I was hopeing for this outcome at the begining of therapy, but one never knows.

Sorry to hear ronjay about yoursituation, hope every thing goes well.
You have to be your own advocate. My initial surgeon want complete package, chemo/rad, surgery than chemo, I am so thankfull for that, my radiologis thought chemo/rad was overkilling. My first surgeon sent me to someone who is specialized in rectal surgery, laparoscopic, he suggested W&W , for him I could skip folfox. My family GP , and friend at same time ask me : "Are you trying to live longer or cure it?".
My oncologist, when I told her its risky, she said "every thing in life is risky".
Now, go and figure!
Will you go on chemo after surgery to kill any free floating cells?

Started folfox, have 5FU infusion for 48 hours, after initial oxaliplatin and leucovorin infusion.
As soon as I walked out side of hospital my voice changed, didnt expect reaction that fast, outside temp was 7,8 celsius, with cool wind.
This drugs are really powerfull.

Couple of interesting links, since I am off, started folfox, got plenty of time on my hand.
First study is interesting, I wish I've seen it before, would ask for folfox tretments right after 25 rounds of chemo/rad.
With this approach , "51% achieved sustained cCR that never required surgery for locally recurrent cancer after a median follow-up of 56 month", comparing to current 25%.
Link:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4650974/

Second link is from European conference, page 16/53 is interesting, comparing cCR patients, ratio is not the same in the groups.
RT, peak time is 15-17 weeks.
http://www.iwwd.org/wp-content/uploads/ ... 015-NF.pdf

Searchable European Cancer Congress:
http://www.eccocongress.org/amsterdam20 ... act-search

mozart13, my tastebuds were impacted during chemo such that anything with any taste tasted awful. As a result I was reduced to eating very bland foods; bread, fries, pasta, TV dinners, etc, etc. Also I was too fatigued and so sorry for myself that I didn't exercise. As a result I gained 20 lbs during chemo and it was a whole lot harder to take that weight off than it was to put it on! So if possible, and when you have nothing else to worry about, keep an eye out for this issue.

Thx prs for advice, extra weight easy come, but hard to go, specially since I crossed 50
This folfox is not easy, it is my first round, and I am alerady tired and weak, but hey thats part of the package.
Will try to stay active as much as possible, doubt that will see much of the gym, learned my lesson when was on chemo/rad, but walk should be acceptablle.

I had a follow up appointment last week and learned some new things. Apparently the w&w approach is thought to be more appropriate for those patients with very low tumors whose surgery would require removal of the sphincter with all its complications and subsequent effects on QOL. Also w&w might be for those weak or elderly patients whose recovery from surgery would be problematic.

The w&w approach might be less appropriate for those patients with higher tumors, and whose surgery might entail removal of only a small part of the rectum. Those patients would be expected to recover well from surgery and enjoy a high QOL. It seems the risk/reward decision is very much based upon the location of the tumor, and what impact surgery might have on QOL.

We discussed earlier in the thread if tissue samples should be taken for biopsies in order to help confirm CCR. I learned In my case these samples were not taken because it would have involved cutting into the sphincter muscle, and that could have had a long term impact on its ability to function.

I also learned some interesting things about my radiation treatment, but they are independent of w&w, so I think I'll start a new thread on neoadjuvant chemoradiation.

This is not original W&W approach, in original studies patients didnt have chemo after chemo/rad, actually for this extra approach where we get folfox after chemo/rad, there is no current studies, I think they are in progress.
I found one small studie where people received 3 rounds of folfox after chemo/rad and cCR went from 25% to 50% , and this is very promising, but it was very small sample.
My surgeon does only rectal surgery, laparoscopilly, he said he is is seen so many that had surgery and didnt need to, people had pCR.
Risk is there, surgery or no surgery , surgery gives piece of mind, some people might have hard time living with out , this is killer disease, no guarantee, one way or another, just close follow up is very important.

Desicion should be based on facts,

You may be interested in the TESAR trial currently being conducted in the Netherlands. For T1/2 N0 M0 rectal cancer. Participants have all had local excision and then randomized into ULAR/APR or chemo radiation. This interests me because I had tumour removed by EMR but then the two options given were W & W (without chemo radiation) or radical surgery (ULAR in my case). I think if chemo radiation had been offered I would have opted for it rather than the ULAR I chose (especially as I now have ongoing LARS).

Study from Habr-Gama "Habr-Gama reported that extending the duration of the chemotherapy post-chemoradiation increased the complete clinical response rate (cCR) of 48%, achieving an overall complete response rate (i.e. including cCR and pCR) of 65% [27]. Recent studies have tested the hypothesis that by delaying surgery or increasing the interval between CRT and surgery, and allowing more time for response or even administration of two additional cycles of FOLFOX chemotherapy, it may be feasible to increase down-staging and achieve a higher rate of pCR [29] and [122]."
Radiation and chemo play major role in downstaging of rectal cancer, standard approach is chemo/rad, operation, chemo. Operation is still considered golden standard, the best thing is when pCR happen.
But one cant ignore above statment where cCR and pCR went up drasticlly just by adding extension of chemo.
Its very important how radiation therapy is programmed, chemo combined with it acts as turbo in killing those cancer cells.

Here is the link to above article, a lots of different approaches for different stages:
http://www.sciencedirect.com/science/ar ... 4913000335

SMH Toronto, storry about W&W apptoach:
Some patients have such a dramatic response to chemotherapy and radiation that there is no detectable tumour at the time of surgery, said Dr. Fahima Dossa, the study’s lead author and a surgical resident at St. Michael’s Hospital. These patients, termed complete responders, have excellent survival and low rates of cancer recurrence, which raises questions about whether they benefit from surgery, said Dr. Dossa.
Link:
http://stmichaelshospital.com/media/det ... ign=buffer