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02-07-2015, 02:42 AM   #1
4peace
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Location: California

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Reassurance

Hey guys, can anyone offer a word of reassurance? Certainly I'm not the only one completely freaked out by the medications I'm on (Cimzia and Aza). My family has cancer for a middle name. My grandfather died from melanoma at age 32, my mother passed away at 53 from cancer, my dad had lung cancer and grandmother had breast cancer.
Aaaaaaahhh. It's just plain scary,especially being on combo therapy. Does anyone else feel this way?
My GI says that the risk for cancer on combo therapy really isn't any greater than if I were just taking the Cimzia.
What does your GI say?
There are many days where I think I'd rather go back to being miserable with Crohn's than be on these meds long term. I dealt with Crohns without any medications for 17 years (no insurance) and while it really was truly miserable, I figure I made it through 17 yrs with only 1 resection lol. Anyway,
Thanks for letting me rant

Hope everyone has a wonderful weekend! We are FINALLY getting some rain in California. I've got the windows open so I can smell and hear it. I almost forgot what that is like (if you're from Cali, you know what I mean!).
02-07-2015, 09:15 PM   #2
InkyStinky
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Ha! My family has the same middle name!!! So sorry to hear of all the cancer in your family.

My GI says that the risk for cancer on combo therapy really isn't any greater
I believe is was CCFA's "What's Best For Me?" webcast http://www.ccfa.org/resources/webcasts.html where the doctor said that "combo" therapy doesn't seem to elevate cancer risks.... but it's been awhile since I listened to it so I hope I'm remembering correctly!

I've never been on combo therapy, but I've been on 6-MP long term. I actually rarely think about the increased cancer risk - the stats are in that CCFA webinar; I think it's like an increase of 2 out of x to 4 out of x. Something that is statistically significant but not really a worry to me. Did your GI give you actual numbers for the risk of cancer? I find the stats very comforting - apparently so comforting I can't remember them!

Enjoy your rain - we're expecting freezing rain in my neck of the woods!
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Sabrina
IBD diagnosed 1990 @ 8yrs old (current dx: Crohn’s); Blood clots 12/2009 (DVT, bilateral PE)
6MP: 50mg/day

Ethel: “So, is everything okey-dokey?” Lucy: “No, it’s inky-stinky” ~ I Love Lucy

-Are you looking for a new treatment option for your Crohn's disease? If so, I suggest you look into the ongoing clinical trial by Qu Biologics for their SSI treatment. Click here for more information or to help spread the word.
02-09-2015, 03:40 PM   #3
4peace
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Inky,
Thanks for the link and the reassurance! I think you're right about the stats on the increased risk (sometimes I let my imagination get the best of me!).
03-06-2015, 07:40 PM   #4
samman
 
Join Date: Mar 2015
Location: Corona, California
For anybody looking for reassurance besides 4Peace (she has family history of cancer) ... I know cancer is the main worry for most but in my view the other side effects are more important considering it only doubles a small risk of cancer over the general population. 2/10000 to 4/10000.

I may be put on 6mp soon if Lialda doesn't work and was researching for answers. The most important thing to make you feel better is 90% of people have TPMT Enzyme production that will help you metabolize 6MP and get rid of its toxic components. There is a genetic test you take to find out if you have don't have mutant genes that make you not handle the 6mp well (or intermediate which makes you handle only smaller doses). If you don't have the mutant genes (that means you don't produce enough of the enzyme) it does not guarantee that you won't have problems. Some people who had bad side effects did not have the mutant genes and still had issues. But in general the test is very important and my DR. ordered it.

I hope I don't have the mutant genetics for TPMT. I am looking for a pill form to keep me in remission. I may be travelling and at 35 years old my wife and I want to start exploring the world. Travelling with needles or being stuck to a facility to get IVs is my last resort. I'm not old yet.

Researching a lot around the internet I looked at almost everything I can find and the webinar posted by CCFA is pretty much a summary of what I read and I almost correlated everything Dr. Siegel said to what I have read all over the place. I would fear the bone marrow suppression, kidney, and liver issues. I think you should push for the TPMT Genetic test and if I were you I would be worried about having organ issues that are essential to your health vs a double risk of a small cancer risk that according to Dr. Siegel can still be treated. This is coming from someone who has not tried 6mp already. I know its difficult to feel better when you don't get a happy story from someone already on it but I hope this helps someone the countless hours I researched this (partly for me and partly because this stuff is really interesting). Genetic test and hope for the best.

Read webinar for the details. I have a bad memory and did not want to copy everything verbatim except for the stuff I felt was important.

DO NOT take this without making sure you Dr. checks your blood periodically. You need the periodic blood tests to make sure your liver is fine. I saw some stories out there of people not checking their blood or doctors who I guess did not make it clear that the blood tests need to be done periodically.

Last edited by samman; 03-06-2015 at 07:43 PM. Reason: Mistake with which user posted what
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