Remicade (with lymphoma risk) or surgery

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Shelliesv
Regular Member


Date Joined Apr 2009
Total Posts : 208
   Posted 4/21/2009 7:36 PM (GMT -6)   
I am supposed to have my first Remicade treatment tomorrow morning and I am a nervous wreck.  I have left sided
ulcerative colitis which is severe and unresponsive to 2 months of steroids, mesalamine, enemas, and probiotics.  The dr. has recommended Remicade but with the lymphoma risk I am wondering if surgery is a better option.
 
I'd love to hear some thoughts on it - if you are on Remicade or had the surgery and what led you to your decision.
37 year old mom of 2.

Diagnosed with Ulcerative Proctitis 1995 (24 years old) / Ulcerative Colitis in 2000 (29 years old)
In remission for 4 years from 2005 - 3/2009 with colazol maintenance only.

Hospitalized for flare 3/23/09 - 3/25/09.

Current Meds: Apriso 4/day, Prednisone 40mg per day, Rowasa Enemas 2/day, Culturelle


sweetmelody
Veteran Member


Date Joined Aug 2007
Total Posts : 650
   Posted 4/21/2009 9:39 PM (GMT -6)   
I'm pretty much in the same boat as you are... I go in for another colonoscopy on Friday. I'm waiting to hear results of that until I make my decision. I have no idea what I want to do. If I were to get surgery ...this year would be great because I've paid my deductible and out of pocket so Insurance is covering 100% right now.
Kara, 22F Married.
Latest-Went to ER cuz I couldn't eat for 5 days and was having severe flare up after passing two kidney stones after a week of the flu. (long month)
GI tried to taper me off of pred fairly fast in hopes to keep me on Lialda and at a lower dosage of pred. to try mesalamine enemas again.  Starting the Imuran as soon as labworks done... longer pred time....yippee *rolls eyes*
Medications:Prednisone 40mg Again! (groan)Lialda 4 a day until Imuran
I am so sick of this disease!
 
 


suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5698
   Posted 4/22/2009 7:17 AM (GMT -6)   
I had surgery before remicade was approved as a treatment option. My understanding is that the risks of lymphoma are rare and reversible if caught. I have a friend who was on remicade for RA and she is one of those who did develop lymphoma. She was taken off and given methoxetrate and her lymphoma went away.

I am very glad that I had surgery before I had to deal with the remicade and humira options. Surgery has relieved me from taking any medications and provided me with a full and predictable life. But surgery has sacrifices too. You can start the remicade treatments and also start reviewing your surgical options in the event you want to have surgery down the road. It's best to know all your options and make the choice that's best for you. I can promise you that for all of us who chose elected surgery, it was one of the most difficult decisions we ever made.

Sue
dx proctitis in 1987
dx UC in 1991, was stable until 1998

1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics

2000 lost all my B-12 stores and became anemic

2001 opted for j-pouch surgery- now living life med-free


Lonie
Veteran Member


Date Joined Feb 2005
Total Posts : 6448
   Posted 4/22/2009 7:37 AM (GMT -6)   
I too have left sided colitis which was very severe; and I was barely functioning. I still look back and wonder how I ever made it to work! I can remember the day I was to have my first treatment and I held my hand in my head as I sat on the toilet and prayed that this would be my saving grace. I had no options left as I didn't do well on the other meds. Turns out it worked very well for me. I'm now living a normal and active life, and haven't had any side effects. SueBear gave a good suggestion; start the Remicade and that will give you time to research the surgery if that is the route you are thinking about. I can assure you that she has given me every reason to relieve my fears about surgery if the Remicade fails at one point in time. Good luck and let us know how you are doing.

Carol

Remicade - will have my 27th infusion on March 19 Vitamin B-12/Biotin, Probiotics
 
Co-Moderator for the UC Forum
 
 


Meesh
Veteran Member


Date Joined May 2006
Total Posts : 619
   Posted 4/22/2009 3:26 PM (GMT -6)   
You can do either, you just need to weigh the options for yourself. I've been on Remicade almost two years now. I also researched the jpouch surgery. From what I gather, for most people who have had the surgery their only regret was not having done it sooner.

For me, now would not be a good time for me to not be working for the couple of months I'd need to recover (my job is quite physical). So, while the Remicade is working for me, I am saving as much money as I can to make my recovery doable. If I go into another flare I'll have the surgery. Remicade is currently the last insurance-approved med for UC, so if it doesn't work that's it.

As I understand it the risk is small for lymphoma. I do find that upper resperatory (sp?) infections hang on for about twice as long as they took to run their course before I got ill.

For your infusion, I go to my hospital's infusion clinic. There are about eight chairs in two rooms, they have a TV but most people prefer it to be off and they bring their own books, DVD players, laptops, etc. I usually bring my breakfast and my needlepoint project. The nurses are great. They closely monitor your first few infusions until it's apparent that you can tolerate it. You're in the right place if you don't. Some people just need some Bendryl along with it, I happen to not.

If you don't need the Benedryl you should not be tired afterwards, I tend to run errands afterward because the clinic is near my favorite spice store and a great Banh Min place.

Whatever you decide, those are really your best options at this point. Other than Humira, which is much like Remicade, I don't know of any treatments in the pipeline. Most of the drugs are one version or another of only three basic drugs.

Meesh
47 yr old female, dx'd UC April 27, 2006; mild arthritis in lower back, dx'd May 2008; Osteopenia dx'd 6/08 Finally achieved remission mid October 2008!!

14 Remicade infusions, current scheduled every 6 weeks: 1st: 7/21/07; most recent: 3/14/09; Current meds & supplements: Lialda, 4 tabs in the morning; Xanax as needed (rarely); Rowesa and/or Canasa; multivitamin w/folate; Culturelle; Fish oil capsules, calcium chews and/or Tums; Vitamin D;

Past meds: Prednisone 4/06-4/08; Entocourt EC; Asacol; Colazal; Venofer (iron) injections Dec '07; Imuran (extremely bad reaction 2/07); Protonix; Lexipro


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 4/22/2009 7:06 PM (GMT -6)   
i went to the dr in august 2006 askign for surgery and my GI talked me into remicade.  Stupidest thing i ever did.  It worked for about 3 months then after that didnt at all and even while it was workign i was always waiting on it to fail.  In april 2007 i had surgery and i really wish i would not have let the dr talk me into trying the remicade in the first place cause i wasted alot of time on a med that didnt work and is really dangerous, esp since my grandfather died of lymphoma, family history and all that.
THat being said, the cancer risk is small, and remicade does help lots of people reach remission, and the infusions aren't hard and it doesnt hurt or anything.  Its just boring, i always got sleepy just from sitting there for a long time.  I cant take benadryl so i would take a zyrtec or something before hand and a tylenol. 
It did start working right away, i got put in the hospital to get it the first time and about 3 days later i was showing improvement.
But in my case surgery was the best thing i ever did.
If you are in really bad shape you  might think about trying the remicade to get you in better health before surgery, it will be easier on you the better health you are in .
good luck with whatever you decide!

carabiner
New Member


Date Joined Jul 2009
Total Posts : 1
   Posted 7/16/2009 10:27 PM (GMT -6)   
I'm new here but facing many of the same issues.

So I used the Remicade as several suggested to get healthier before surgery. I knew I didn't want to be on Remicade long term (but thank God it's an option for people who need to) so I used it as a bridge to really think about surgery and what I really wanted or expected.

I couldn't take prednisone anymore and it was the only thing that maintained remission for me. I used it in cycles and was on it for most of my second pregnancy. I now have osteopenia and some other consequences of the steroid.

I have received 3 infusions. I will receive my 4th in a month and then a month after that (mid-Sept), I will have surgery.

Good luck to all.
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