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Dad of Jake
New Member


Date Joined May 2008
Total Posts : 3
   Posted 5/14/2008 1:10 PM (GMT -6)   
Hi, I just joined this forum today. My son, diagnosed with ulcerative colitis four years ago,  is lying in a hospital bed right now, he was just told he has t cell lymphoma, a condition attributed by me at this point anyway to a suppressed immune system brought about by years of taking Imuran. He is currently on prednisone. The doctors are telling him he has a 50-60% chance to survive. The disease has attacked his bone marrow, he in not making platelets, it may be that this is leukemia. I will be meeting with his Doctors this afternoon. They will probably recommend chemotherapy, maybe stem cell replacement, maybe bone marrow transplant. Has anyone out there faced this nightmare before? Does anyone have any words of advice? Thanks. Dad of Jake  

suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5698
   Posted 5/14/2008 2:12 PM (GMT -6)   
Dad of Jake,

I had no idea that years of immuno drugs could lead to a type of lymphoma. I am so sorry to hear of your son's diagnosis and will keep him and your family in my prayers. Thank you for enlightening us on the potential consequences of Imuran by sharing Jake's story. I hope he pulls through.

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


jujub
Forum Moderator


Date Joined Mar 2003
Total Posts : 10407
   Posted 5/14/2008 4:29 PM (GMT -6)   
I'm so sorry to hear your son developed this problem. I've seen studies that show a slight increase with long-term Imuran use and others that show no relationship. Not that it really matters to you at this point. I've not seen anyone on this forum discussing lymphoma or leukemia, and I've never met anyone who had this outcome.

I'm just very sorry your son and your family are having to go through this, and hope the outcome is good for him.
Judy
 
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Asacol, Rowasa, Pentasa, Prednisone, Entocort, Azathioprine
Avascular necrosis in both shoulders is my "forever" gift from steroid therapy.
Colazal,  Remicade, Nature's Way Primadophilus Reuteri. In remission since April, 2006.
 
Co-Moderator UC Forum
Please remember to consult your health care provider when making health-related decisions.


Bennie
Veteran Member


Date Joined Nov 2006
Total Posts : 552
   Posted 5/14/2008 4:44 PM (GMT -6)   
Dad, I haven't read anything about this yet. I will keep your son in my prayers. My sister-in-law had non-Hodgkins lymphoma. No one in the family was a bone marrow match and they couldn't find any donors. They ended up using her own bone marrow. She is cancer free 15 years now. I hope for a speedy recovery for your son.

--Mom of bratcat (17 years old)--
Daughter bratcat was diagnosed with pancolitis October 2006
Current meds:
Asacol - 4 pills/3Xday, 2 tabs 6-mp/1.5 tabs 6-mp every other day, 50 mg prednisone
 
11/14/06 - started prednisone; 1/28/07 - finished prednisone!
3/3/07 - began to taper off hydrocortisone sloowwly! Summer 2007 - slowly began tapering Rowasa. 9/07 -- flaring? Nightly Rowasa. 9/21/07 -- added hydrocortisone enemas. 9/30/07--added prednisone. 10/31--started 6-mp, stopped the enemas. Started lowering prednisone. 3/08-another flare!


Sara14
Veteran Member


Date Joined Mar 2007
Total Posts : 4034
   Posted 5/14/2008 8:35 PM (GMT -6)   
I'm so sorry to hear about your son's situation. I don't have any experience with imuran or lymphoma, so I can't help you with your questions. I will keep your son and your family in my thoughts.
24 years old
Diagnosed with UC March 2007; yet to go into complete remission
Asacol 4 tablets 3x/day
Rowasa (generic) - nightly; Canasa (1,000 mg) in the morning
Nature's Way Primadophilus Reuteri 2/day; Chewable multivitamin; Metamucil; Viactiv


Dad of Jake
New Member


Date Joined May 2008
Total Posts : 3
   Posted 5/14/2008 10:50 PM (GMT -6)   
I'd like to thank everyone for their responses. As my son is in an active stage of ulcerative colitis right now, we will be trying to achieve remission by his first use of Remicade. If that achieves remission, the risk of infection is lowered so the doctor can administer  chemotherapy drugs. He has to have the drugs in any event, but active bleeding invites infection, so Remicade may be a critical component of this whole thing.  I appreciate your prayers for my son. Dad of Jake

jujub
Forum Moderator


Date Joined Mar 2003
Total Posts : 10407
   Posted 5/14/2008 11:03 PM (GMT -6)   
I hope his reaction to Remicade is as positive as mine and many others, Dad.
Judy
 
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Asacol, Rowasa, Pentasa, Prednisone, Entocort, Azathioprine
Avascular necrosis in both shoulders is my "forever" gift from steroid therapy.
Colazal,  Remicade, Nature's Way Primadophilus Reuteri. In remission since April, 2006.
 
Co-Moderator UC Forum
Please remember to consult your health care provider when making health-related decisions.


Bennie
Veteran Member


Date Joined Nov 2006
Total Posts : 552
   Posted 5/14/2008 11:08 PM (GMT -6)   
I hope the Remicade works for him.  How old is he?

--Mom of bratcat (17 years old)--
Daughter bratcat was diagnosed with pancolitis October 2006
Current meds:
Asacol - 4 pills/3Xday, 2 tabs 6-mp/1.5 tabs 6-mp every other day, 50 mg prednisone
 
11/14/06 - started prednisone; 1/28/07 - finished prednisone!
3/3/07 - began to taper off hydrocortisone sloowwly! Summer 2007 - slowly began tapering Rowasa. 9/07 -- flaring? Nightly Rowasa. 9/21/07 -- added hydrocortisone enemas. 9/30/07--added prednisone. 10/31--started 6-mp, stopped the enemas. Started lowering prednisone. 3/08-another flare!


JewelsOK
Regular Member


Date Joined Jun 2007
Total Posts : 364
   Posted 5/15/2008 8:11 AM (GMT -6)   
Oh Jakes Dad, all I can say is as a parent with two kids w/UC and both on immune suppressors (one on Imuran and one on 6MP), you are living my worst nightmare. My heart goes out to you and your family. I will be praying that your son recovers fully. When I asked my son's doctor about the cancer link when he was first put on Imuran last summer, she said it is not really known whether it is the drug or the disease that is linked to cancers.

I am so very sorry that you have to face this. Please keep us posted on how your son is doing. Again, I will be praying for healing!!
Julie

Mom of Son 16 UC dx 07/02, Sulfasalazine, Imuran, folic acid, L. Reuteri, Zyrtec, Iron, Vit/Min

Daughter 9 UC dx 08/07 Colazal, 6MP, Iron, Vit/Min., Culturelle


love4cats
Regular Member


Date Joined May 2007
Total Posts : 458
   Posted 5/15/2008 8:56 AM (GMT -6)   
I am so sorry to hear about your son, I will keep him in my prayers for a speedy recovery.
 
 
Dx:  UC Proctitis 2006 
Meds:  None so far. Garlic works to ease flares. My GI laughed when I told him and said it was just coincidence. 
Started Meds:  Apr 9 08 500mg 5ASA (salofalk) to ease flare, tapering, stopped. 
Diet:  Regular fresh garlic, Biobest yogurt daily, Omega 3 supplements, very limited junk food, carbs and processed food, low fat diet.  Lots of fresh fruit and veggies (limited potatoes). 
 Added: tumeric and probiotics.
 
 


snickers0506
Regular Member


Date Joined May 2008
Total Posts : 63
   Posted 5/15/2008 1:50 PM (GMT -6)   
I will pray for your son. (((hugs)))
40 yrs young
dx UC (pancolitis) Dec 03 then re-dx to Crohns colitis April 04 then re-dx again to UC Dec 07-currently taking no meds and in remission


bookworm21
Veteran Member


Date Joined Mar 2008
Total Posts : 1766
   Posted 5/15/2008 1:55 PM (GMT -6)   
I am so sorry to hear about your situation. Your son and family are in my thoughts and prayers.
*hugs*
Female, Age 19, Dx w/ UC August 2007
Seasonal allergies
9 Asacol/day, 1000 mg Canasa (caused side effects), Proctofoam
Digestive Advantage (Crohn's & Colitis), 2 pills/day
Calcium chews
 


Dad of Jake
New Member


Date Joined May 2008
Total Posts : 3
   Posted 5/15/2008 3:12 PM (GMT -6)   
Thank you for all your kind words and prayers. I am taking this one day at a time-Jake turned 23 in the hospital on Sunday. Jake's Dad 

ediekristen
Veteran Member


Date Joined Apr 2007
Total Posts : 1366
   Posted 5/15/2008 3:24 PM (GMT -6)   
What a terrible thing :( I'm so sorry you both are going through this. He's lucky to have such a caring father by his side.
It's scary that the things we are given to make us feel better in one way can sometimes cause such drastic, terrible side effects/other conditions. I do not have any experience with this, though I have heard of the connection of immunosuppressants and lymphoma. I wish I could offer some advice, but at this point I suppose the best thing to do is just stay positive and don't jump to any negative conclusions, not until you have all the test results and second opinions and the whole works.

Perhaps if Remicade can improve his colitis, then he will have more strength to heal and fight this off and get better.

I'll keep your son and family in my thoughts and send some positive energy his way.
Female, 22, Ulcerative colitis (pancolitis) since 1999; GERD; gastritis; osteopenia in hip & lumbar region of the spine from long term prednisone use.

Current Meds:
10mg Lexapro (for depression/social anxiety)
Digestive Advantage: Crohn's and Colitis formula (2 pills per day, started 5/14/08)
125mg Azathioprine
4800mg Asacol (Four 400mg tablets, three times a day)
 
 
 


Katmom
Veteran Member


Date Joined Mar 2008
Total Posts : 1202
   Posted 5/15/2008 9:21 PM (GMT -6)   
There is no pain like that we feel for our children. I hope you hang tough. The doc's have great resources, and will figure things out. Stay on them, and keep learning. Find a way through this, and don't give up. I don't have experience with your particular issue, but as a parent I cry with you.
Kathy
Daughter,14 diagnosed 1-08 w/ UC .learning from you all.
Rowasa, Asacol, Prednizone 50mg, major flare, Hosp. @U of C, Comers. IV steroid, no food, then low residue, home.
Now, began mp6, beginning taper of Pred, now 45mg, horrible acne, moon face, and fearful of future.
trying probiotics, Omega 3, and keeping up with doc visits.


haileys letter
Regular Member


Date Joined Nov 2006
Total Posts : 296
   Posted 5/16/2008 10:29 PM (GMT -6)   

Jakes Dad,

  My prayers are with you and your son. I have a eight year old daughter that was diagnosed with UC at the age of 15months.  I will never forget the feeling of hopelessness we felt when she had a bone marrow aspiration done to check for leukemia.

 Her immune system was so weak and just not functioning right. 

 Since October 26 2006 She has been well.

 Please take the time to read her story. It is posted under my signature. She has been off of all medications since October 26 2006.

 I will pray for your son. Please email me if you need to talk.


 http://www.healingwell.com/community/default.aspx?f=38&m=643365&p=1<!-- Edit -->
Dave & Kelly
Daughter 7
Diagnosed at 15months with UC (pancolitis) then  Selective IgM defiency
Took many medications, no relief,GI wanted to start her on Imuran.
Took her to a natural doctor. He did a detox on her body.
Going to the restroom 15 times a day, developed pneumonia,recieved shots of Rocephin (wide sprectrum antibioitic) within24 hours of Rocephin bowels were formed.Going on Eight months without any medications and she is doing great She takes Forvia multi vitamin ,Natures Way Primadophilus Reuteri, Viactiv calcium chew, fiber chews daily
 
 
 
 
 
 
 
 
 


expecting226
Regular Member


Date Joined Jul 2007
Total Posts : 402
   Posted 5/16/2008 10:58 PM (GMT -6)   
Like the others, I am praying for your son and for your family.  I pray that God gives him the strength he needs to fight... and to win. 
Proud new mom of a beautiful baby boy!
Current Medications:
- Asacol (4 pills, 3x per day)
- Rowasa (1 enema daily, as needed)
- Folic Acid (1 mg, 1x per day)
- Calcium (600 mg, 2x per day)
- Prenatal Vitamin (1x per day)


gymratin
New Member


Date Joined May 2008
Total Posts : 7
   Posted 5/17/2008 8:37 PM (GMT -6)   

been said b4, wish you and your family the best.  really puts my situation in perspective.  best wishes you guys are in my prayers!!!!!!!!

gym


munchkindd
Regular Member


Date Joined Oct 2007
Total Posts : 348
   Posted 5/17/2008 8:49 PM (GMT -6)   
I can't even imagine what you are going through. I along with so many others will pray that things will soon improve. Good luck to Jake, you and your family...................
*******Donna*******
 
diagnosed with uc 27 years ago.  Enojoyed 20 year remission with just minor blips here and there (approximately 16 of those years without any meds)
 
In a flare for 2 very long years which Asacol didn't help at all.  Finally in remission again since Jan 2008, can't believe it..............
 
currently on Sulfasalazine 2 tabs 3x day. Folic acid, mesalamine enema 2 x a week. Omega 3, Probiotics, multi vitamin, cacium supplement, Biotin....
 


JsMom
Regular Member


Date Joined Jul 2006
Total Posts : 57
   Posted 5/18/2008 10:48 AM (GMT -6)   
Hello Jake's Dad,

You and Jake have been on my mind since reading your post. Although I'm still reeling a bit from my son's diagnosis, I felt compelled to respond to you. My son had a total colectomy with permanent ileostomy (done in two stages) for UC. He was diagnosed at 4 years old and subsequently had various tests over the ensuing years to confirm UC and rule out Crohn's. His disease was very aggressive and not responsive to the meds or vigilant following of SCD. He was deteriorating from continuous loss of blood that couldn't be controlled, so last summer we made the decision for colectomy. He did very well afterward for about 6 months, after which abdominal cramping and fever came back, and recent tests revealed he has Crohn's. Now he is on Remicade and doing fairly well.

It's agonizing. There are people on the ostomy site who, even decades ago, had total colectomy (not j-pouch) for UC and are doing great with no signs of Crohn's at all.

I do not regret the decision for colectomy for my son, in fact, I wish I had done it sooner, despite the Crohn's diagnosis. Because, while he is not free of many of the ravages of the disease, he is free from the exhausting and debilitating diarrhea. For us, the ileostomy is a cakewalk in comparison to that.

It's a very difficult and intensely personal decision, but if Jake has UC and not Crohn's, colectomy might be something to ask his doctor about, to free him of the UC so he may better fight the lymphoma.

Keeping you and Jake in my prayers. Please keep us informed if you can.

JsMom (Jeremy's Mom)

demchim
Regular Member


Date Joined Dec 2005
Total Posts : 124
   Posted 5/18/2008 9:53 PM (GMT -6)   
Dear Jake's dad,
 
I'm so sorry for the diagnosis of T-cell lymphoma.  The immunomodulators (Imuran) and TNF inhibitors (Remicade) scare me.
There have been rare reports of hepatosplenic gamma-delta T-cell lymphoma developing with combination of Imuran and Remicade.  My bro has been on that combination for several years and while we know the risk, his quality of life was horrible when he was flaring.  So, I guess it comes down to risk versus benefit and quality of life.  I will keep your son in my prayers.
 
 

lambkins
Veteran Member


Date Joined May 2008
Total Posts : 574
   Posted 5/20/2008 7:26 AM (GMT -6)   
Dear Jake's dad,
My heart goes out to you,be strong and take one day at a time.
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