The Colon Club

Found out recently that my cancer has recurred after being NED for 4 years. Last time around (at age 35) I had relatively straightforward colon resection (sigmoid colon) and 12 rounds of FOLFOX. This time around, because of location, doctors have recommended what I understand to be the protocol for rectal cancer: 5.5 weeks radiation + round the clock 5FU pump, followed by surgery to remove tumor and more colon/rectum (and potentially uterus), likely followed by chemo. I have learned the basics about side effects for the radiation and reasons why my onc is recommending 5FU vs Xeloda. However, I am hoping to learn more about experiences from people who did this after having previously gone through surgery and chemo and making it to remission. Does this potentially make one more susceptible to side effects? With the chemo last time, I made it 9 rounds w/the oxaliplatin but overall was wiped out and dealt with neuropathy, hand/foot syndrome, and taste issues. And, any overall advice for a newbie to chemorad (i.e. energy level, were you able to work, did you get skin irritation, did you experience gynecological issues?)? Thank you!

tdash wrote:Found out recently that my cancer has recurred after being NED for 4 years. Last time around (at age 35) I had relatively straightforward colon resection (sigmoid colon) and 12 rounds of FOLFOX. This time around, because of location, doctors have recommended what I understand to be the protocol for rectal cancer: 5.5 weeks radiation + round the clock 5FU pump, followed by surgery to remove tumor and more colon/rectum (and potentially uterus), likely followed by chemo. I have learned the basics about side effects for the radiation and reasons why my onc is recommending 5FU vs Xeloda. However, I am hoping to learn more about experiences from people who did this after having previously gone through surgery and chemo and making it to remission. Does this potentially make one more susceptible to side effects? With the chemo last time, I made it 9 rounds w/the oxaliplatin but overall was wiped out and dealt with neuropathy, hand/foot syndrome, and taste issues. And, any overall advice for a newbie to chemorad (i.e. energy level, were you able to work, did you get skin irritation, did you experience gynecological issues?)? Thank you!

Sorry no one has responded, sometimes it gets busy around here and a new thread can get buried fast. Best advice I can give you, because you are dealing with a recurrence, get a 2nd opinion at a major cancer hospital or treatment center.

Please keep us posted and WELCOME. There really is a lot of information and support around here.

Lee

I'm sorry your cancer has returned!*hugs* I hope your chemo and radiation go well!*hugs*

tdash wrote:Found out recently that my cancer has recurred after being NED for 4 years. Last time around (at age 35) I had relatively straightforward colon resection (sigmoid colon) and 12 rounds of FOLFOX. This time around, because of location, doctors have recommended what I understand to be the protocol for rectal cancer: 5.5 weeks radiation + round the clock 5FU pump, followed by surgery to remove tumor and more colon/rectum (and potentially uterus), likely followed by chemo.

You haven't been on chemo for quite awhile, so you may not be more sensitive than last time. The 5FU pump is the least toxic chemo. I had 25 rounds of pelvic radiation after the cancer spread to my uterus and I had a hysterectomy. I also had 3 sessions of internal vaginal radiation.The radiation make me tired, but no other major side effects besides some mild digestive problems like constipation - which I took Miralax for.

Good luck, I hope things go well for you,
Sally

I finished the radiation (30 sessions) on May 8th this year. The last couple weeks were the most difficult, as I had really bad diarrhea. We got a bidet attachment for our toilet and I must say it was a lifesaver, using toilet paper will become impossible. When I was out I used a small bottle of water to wet toilet paper in order to use it. The radiation technician told me at my first visit to go on a very low fat and no more than one gram of fiber a day diet. I did this and made it through radiation like a boss. You will make it through this phase too. There are lots of people here who give great advice and have walked the path ahead of us and share their experience.

Hello and THANK YOU for the replies. Got back from an extended family reunion, and it was nice to have the distraction. I'm ready to officially start treatments on Monday. Got my cool radiation tattoos before we left, and got my port this week. My doc ended up recommending I try the Xeloda and see if I can tolerate it. If not, it's onto the pump. We ended up staying with my docs at Dana Farber, but last month as was an interesting/terrifying/stressful month that included a second opinion at MGH. Eventually both places came to the same conclusion and recommended treatment plan, but for a very long few days my husband and I thought we'd have to make a tough decision between two vastly different plans. Hoping to make it through this phase like a boss, too, SpringerSpanielMommy!

Still figuring out how to use all the features on this board. If Testing765 is reading this, I got your PM but seems I am not able to send PMs yet.

Sorry to read of your reoccurrence... I am not sure how they found this, where it has spread, or what your indicator were, but like Lee stated, I would seek out the advice of a major cancer center early on so that you have the most aggressive treatment plan established for your new prognosis. Much of this depends on where you live and how close hospitals such as Sloan Kettering, Dana Farber, MD Anderson and others around not mentioned.

If you add more information to your footer as to what your current pathology status is others with similar may chime in to your conversation with advice.

Maintenance chemo has been less intrusive for my wife as her initial treatment, so hopefully you can get on a maintenance schedule quickly after they resolve the most recent finds. We are thinking of you and hope that you are getting the right information and treatment plan you deserve in a timely manner. Good Luck.
WS

Sorry about that... I just reread your post and see that you are at Dana Farber and MGH. Two excellent Boston cancer hospitals that my wife has used as well. When we were faced with similar treatment differences, my wife chose the more aggressive treatment plan at Dana Farber. She has no regrets and is actually being treated every three weeks at an MGH affiliate hospital under the Dana Farber treatment plan. Those two organizations can work well in synergy with each other if your local oncology doctors are located outside of the Boston metro area.

Please keep us posted of your thoughts and experiences during this process. We can all learn from each other.
Best wishes.
WS

I'm up in New Hampshire and got the chemo and radiation locally but went to Dana Farber for second opinions and Brigham and Womens for surgery. I had Xeloda for the Neo-Adjuvant chemo and I had few side-effects from it outside of being more tired and having less stamina. I was able to work through the chemo and radiation though I worked from home a bit more to avoid the potential from catching something from someone else at the office. I used Depends pads for men (they are light and thin) for the radiation as it can make holes in your rear end that stuff goes through. The after-effects from the radiation got quite painful after about three weeks - but the pain went away two weeks after the radiation was done.

You can get diarrhea and constipation with the chemo and the radiation and sometimes you get one right after the other. You can take things to try to keep things in balance.

You should generally drink about 24 ounces of water about an hour before radiation as it helps protect organs from radiation.

So I had a relatively easy time of the chemo and radiation but things vary widely from person to person. I've heard of other problems from other posters.

Thank you. This info about DFCI and MGH definitely helps me feel better about how things turned out with regard to the treatment plan. My doc has since recommended I try the Xeloda during chemorad (start tomorrow); if I can't tolerate it then will switch to 5FU. I got my port back in this past week, and it's still tugging in ways I don't quite remember the last time around. Has me a little nervous that it will be this uncomfortable the whole time. I'm reminding myself that having an IV catheter at the base of one's neck will understandably take some getting used to.

I'm also planning on working as long as it makes sense for me....The daily commute into DFCI is a pain, but hey I'll take it.

Added some more info to my signature....still figuring out best practices for this forum:)

tdash wrote:Thank you. This info about DFCI and MGH definitely helps me feel better about how things turned out with regard to the treatment plan. My doc has since recommended I try the Xeloda during chemorad (start tomorrow); if I can't tolerate it then will switch to 5FU. I got my port back in this past week, and it's still tugging in ways I don't quite remember the last time around. Has me a little nervous that it will be this uncomfortable the whole time. I'm reminding myself that having an IV catheter at the base of one's neck will understandably take some getting used to.

I'm also planning on working as long as it makes sense for me....The daily commute into DFCI is a pain, but hey I'll take it.

Added some more info to my signature....still figuring out best practices for this forum:)

The port situation should get better. I haven't really noticed it for a long time outside the restrictions that it places on my working out.

On MGH-DFCI - they do work together on some things and Brigham and Womens is the hospital for in-patient for DFCI. MGH and Brigham and Womens are both part of Partners Healthcare. My approach to going to appointments at DFCI/MGH has been to driver there at 4:15 AM and then work in the Cafe until my appointment, and then drive home. It takes me 50 minutes to drive at that time. A few hours later and it would take me two hours.

One of the expensive parts is parking. B&W validates for $10 or $12. I would guess that DFCI does as well but I don't know which parking garage they work with. Going there 28 times will cost a few bucks in parking fees though they are small in terms of the overall treatment costs. I have tried a variety of ways to get down there in the past.

MGH is easier as it's more easily accessible via Commuter Rail if you're outside of 495.

If you do Xeloda, make sure you get medically recommended hand and foot cream. Your skin can badly peel.

I live on Cape Cod, get my treatment there, but go to Mass General for surgeries.

Certainly options! Thinking of you.