Ileostomy Reveral Prior to Chemo

[rickrobben]

I went in for a routine colonoscopy on June 13th and it was discovered I had stage 3 rectal cancer. They told me I qualified to be in a study that only uses Chemo and no radiation. I decided to do it. I had six chemo treatments with infusion. MRI showed no more tumor. Surgeon scoped me and could not see the tumor. I had the rectal surgery and the pathology report was completely clean. Tumor completely gone and no nodes involved. Surgeon said to talk to oncologist if I even needed more chemo. Oncologist said he wants me to do six more treatments just in case.

The problem is the Ileostomy. I had no problems with the chemo. I was in great shape when this all began. During the chemo I hiked five miles a day and did not miss a day of work. Right after I received the temporary ileostomy the issues started. Headaches and fatigue. I also get a little dizzy.
My team has discussed with me having the reversal first and then doing the chemo. During the chemo I had no problems with diarrhea.

I can't find much information about delaying chemo for 8 weeks. I think I would rather 100 percent and complete the 6 chemos and not risk not being able to complete them with the Ileostomy. The side effects also make me paranoid that the cancer is in my brain, which all my doctors told me rectal cancer does not go to the brain until late stages of the disease.

Does anyone think waiting 8 weeks considering my pathology report is a big deal?

[BrownBagger]

I got reversed in August and started chemo in October. No issues for me. I was really glad to get rid of the bag.

[juliej]

I had my reversal on February 24 and started chemo (Xeloda) on March 26, so I'm not sure you need to wait a full 8 weeks before starting chemo. I had fatigue and headache issues with my ileostomy too until I started using a sports drink (Nunn tablets) to keep my electrolytes in balance. You might give that a try.

If your docs agree to having the reversal before chemo, I'd go for it! Also, since you didn't have radiation, ask about follow-up care, like a sigmoidoscopy. My doc requires them every 6 months for 5 years. It's a small inconvenience, but reassuring to find out you are still clear. Congratulations on a very successful surgery!

[rickrobben]

Thank you for the reply. I will start chemo four weeks after the reversal if not sooner. I can't get the reversal until Feb 6. My last chemo was late October a month before surgery. Julie why did you have reversal prior to Chemo? Even with a clear path report and clear scans I am still a bit worried about waiting for chemo so long.

[justin case]

I had the bag for 3 weeks, and then did 12 rounds of chemo. Everyone has readjustment problems from the Ileo, whether they are through with chemo or not. As long as you are going to feel shitty, (from the surgery) while your lounging around doing nothing after reversal, you might as well do some chemo

[CRguy]

JMO...
I let the pouch take the hit and reversed (Feb) after chemo ended (Dec.)
With Xeloda it was not a huge issue anyway, as NO GIT issues for me.
IF it was Folfiri .... maybe an issue ?????

JMO
Cheers
CRguy

[Steph20021]

I was told we had to wait at least 6 weeks after my reversal to start up chemo again, and thats what we did. I am stage 4 metastatic so I wanted to get back on chemo as quick as possible obviously. I was already in talks about having my reversal done before we knew the cancer was back. It was a big quality of life thing for me and I have no regrets about taking the time to do it. Had I not done it at my first opportunity it may have never happened as I am chemo for life.

[rickrobben]

Steph,

Where was your original cancer? I am sorry it came back. My quality of life is not what it was prior to the Ileo. But, after meeting with the doctors and speaking with personal doctor friends I think it is best to get the chemo going. I have been very luck so for with a total response to the chemo. I don't want to rock the boat. Right now there is not visible cancer in me. But, I guess you never know. I wish you the very best.

Rick

[jjinmd]

Rick,

I had a complete response (though both rectal tumor/nodes and liver) after chemo and a short course of radiation prior to surgery. I'm with you on the temp ileostomy - though I'm back to work and my "normal" life, it has been a beast to manage my fluids/electrolytes and I feel weaker now than I did doing the chemo up front. I lost 10 pounds (down to 105) after surgery. My surgeon said he could reverse "whenever" at my 4 week follow up but would follow the lead of my oncologist...who really wants me to do the mop up chemo first. But I wasn't strong enough at my 4 week follow up and now I'll be 8 weeks post op at my follow up next week. I'm hoping to get the green light to start chemo within days after that, but he may keep pushing it out if he is still worried about my lack of weight gain. Given that hindsight, I almost wish that I had gone for the quick reversal at 4 weeks. I just want to get on with something!

[CrystalSue]

DH had last chemo 9/2; LAR 11/5; Reversal & port removal 12/18. He will start chemo (Xeloda) on 1/12.

[Steph20021]

Rick,
When I was first diagnosed I had synchronous tumours, one in my transverse and one in my sigmoid. However it was also in 6 lymph nodes, my one ovary was diseased and I had about 26 hyper plastic polyps of which about 20 were sessile serrated polyps.

We were hopeful after my emergency surgery in February removing all of the visible Cancer plus the 12 rounds (6 months) of folfox that I would be okay but I never got a clean scan at the end of folfox. After my first line treatment, the CT and PET showed the disease is on my other ovary and in some fatty tissue on my right side of pelvis, and it was determined that I had a dormant liver met as it had gotten smaller during folfox but was very small and never previously thought to be disease until the change in size confirmed that.

I am hoping for the best for you. It's awesone you have had a great response.