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Crohn's Disease Forum » Your Story » 21 year old lymphoma survivor~ (crohn's) needs advice!


04-04-2013, 06:38 PM   #1
dansp5
 
Join Date: Apr 2013
Location: California
21 year old lymphoma survivor~ (crohn's) needs advice!

Hello everyone! This is my first post. I'm a 21 year old male, was diagnosed with crohn's in 2005 when I was 14. I took 6-mp for around 3 years somewhat inconsistently until I stopped taking medication. Life was going smoothly until June 2012 when I was diagnosed with Diffused large B-cell lymphoma. I underwent four months of chemo until about October. Recovery from chemo was going well and as I was just beginning to feel 100% again, and life threw another curveball; Crohn's has come back very aggressively. I have a very good oncologist at UCLA and he works well with my GI doctor, whom I trust both completely. They definitely believe the 6-mp was the cause of my lymphoma, and after my recent colonoscopy, they believe there is no other choice but another immunosuppressant drug (Remicade or Humira). I have a hard time coming to terms with taking the same type of drug that already gave me CANCER. Any advice would be greatly appreciated! Natural methods, Holistic medicine, all advice will help my open mind in making a decision I can be comfortable with. Thanks
04-04-2013, 07:03 PM   #2
Clash
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Welcome to the forum, dansp5. I can totally understand your concern as the risks that immunosuppressants carry biologics like Remicade and Humira also carry.

I don't have any advice because I am unsure of the route I would want my son to take if he were in your situation but there is another member on here who has a daughter that has CD and also faced cancer. Her daughter, age 17 I think, had thyroid cancer and they couldn't for certain tell her that it wasn't caused by her Humira use. She tried LDN I believe and is now looking into Stelara. I'm going to tag her, Livilou, so that maybe they can give you some insight on their decisions.

I really hope you are able to find something to get your CD into remission quickly!
__________________
Clash
Mom to
C age 19
dx March 2012 CD

CURRENT MEDS: MTX injections, Stelara


Dx May 2014: JSpA
8/2014 ileocecectomy
9/2017 G tube

PAST MEDS: remicade, oral mtx, humira

Last edited by Clash; 04-04-2013 at 08:05 PM.
04-05-2013, 10:13 PM   #3
***Lisa***
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Hi Dansp5 & welcome to the forum:

Although I do not have experience with cancer that may or may not have been caused by meds, my daughter did take 6MP and Remicade for years and both meds stopped working so her GI wants her to take Humira now, but she has decided not to jump over to Humira quite yet mainly because of the known cancer risk. What we have decided to do for her now is complete her course of prednisone and continue to try to control her CD symptoms with vitamin therapy, specifically Vitamin D3 along with some cofactors (Folic acid, magnesium & zinc). We feel that vitamins pose a much smaller risk to her long-term health so we want to give vitamins a good try. To learn more about these vitamins visit http://www.crohnsforum.com/showthrea...519#post627519.

Please keep us posted on what you decide to do. We are here whenever you have questions or just need to vent.

Take care.

Lisa
04-06-2013, 02:33 AM   #4
happy
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Join Date: Nov 2010
Location: Alberta

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Welcome to the forum dansp5. You've had quite a journey.
You could ask your doctors about trying Enteral Nutrition for awhile to give you some time to decide on further treatment. There is info about this on the forum here: http://www.crohnsforum.com/showthread.php?t=23607 and http://www.crohnsforum.com/forumdisplay.php?f=161

May you soon be feeling well.
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Enteral Nutrition induced remission in August 2011
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05-17-2013, 08:27 AM   #5
Livilou
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Hello dansp5! I am just reading this post now (Thank You clash for tagging me!)! I have not been on much as things have been crazy hectic around here! My husband fell 15ft off of a ladder and was hospitalized in ICU for vetebral compression fractures and other internal injuries. You can imagine how many MD appts we have between my husband and 2 teens with CD! On top of that I have been battling the insurance company to approve Stelara for Liv, which they finally did (just got the call on Tuesday!!!!!) We are sorting out dosing/frequency issues...but pharmacy will be shipping the drug next week! I am nervous and excited at the same time, it is always worrisome when our kids are starting new meds.
@ dansp5, I am so sorry for what you have been facing... a cancer diagnosis is scary enough, than add aggressive CD to the mix...tough times I'm sure. My dd had also been on 6MP for 5 years before starting biologics, she was on Humira for approx. 5 months when she was diagnosed with thyroid cancer. We consulted with many top MD's (GI and Oncologists) in the NYC area and to be honest, they are not sure which med may have caused the cancer (they feel that 6MP was more of a culprit). It could be that my dd would have been diagnosed with cancer without those drugs, they just can't be sure, there is not a lot written about thyroid ca with the use of immunosuppresants. The one thing they do agree on is that Liv should NOT be restarted on TNF blockers because the risk of any cancer reoccurrence is too high! They came to the conclusion that Stelara would be the best option because it has a different mechanism of targeting inflammation. Of course there are still risks, the drug is very new, even for psoriasis patients. Liv has been on LDN and steroids for over a year now and recent studies (MRE/scopes/fecal cal) have shown reoccurrece of CD, with positive biopsies and some minor stricturing disease.
She also just recovered from 2 bouts of c-diff (I believe she picked it up in hospital after her scope). We struggle to keep weight on her and I'm concerned about long term steroid use. Also still has occasional stomach pain, nausea and bloody stools. We are going with Stelara and praying that we have good results! Liv is going off to college in August, 5 hours away, and I am terrified about sending her off with new meds without being able to watch her closely, so scary....
Have any of your doctors mentioned Stelara? I hope you have a plan real soon and are feeling well. Best of luck and keep us updated. Kim
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