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Terrified of cancer risk - Imuran

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Posted 7/19/2012 5:40 PM (GMT 0)
Anyone set my mind at ease? Ive been on it for five years and am in pretty much full remission...no pain. I let my bloodworm lapse but have had it done recently and haven't heard from the GI (assuming that's good) but found that the cancer risk doubles per annum, which is crazy. Im only 24 and would rather not have cancer in the next decade.
Posted 7/19/2012 6:09 PM (GMT 0)
Yes... cancer seems a bad idead to me too.

I've been in imuram for 10 years. My docs always says that research regarding linfomas tend to show a small increase in the chance, but many reseaches are NOT conclusive. So it's not that relevant, but possible.
I've heard two of them, who work with lots of IBDoers, say that's in the studies and in the books but they have never seen a case in the clinic.

Hope that helps.
Daniel
Posted 7/19/2012 6:32 PM (GMT 0)
Hi Will,
Lots of people are worried about the increased cancer risks with imuran, so you're not alone there. But the risks are actually fairly small.

I'm not sure where you read that they double per annum.

Some of the research I've seen does show an increased risk, but it doesn't double per annum. From what I've seen, it just doubles. That sounds horrible, right? But look at it another way: If the risk for the general population to get lymphoma is 1 out of 1000, and now you're taking imuran, your risk is still 1 out of 500. That's not so bad, and worth it if the imuran is helping control your Crohn's. Because uncontrolled Crohn's has many more health risks associated with it than that tiny chance of lymphoma.
Posted 7/19/2012 7:18 PM (GMT 0)
Doubling per annum sounds too high to me too. I've never read that before. If Imuran is working for you, I seriously would not come off it because of a slightly higher (but still relatively tiny) chance of getting lymphoma.
Posted 7/19/2012 9:41 PM (GMT 0)
I do not want to scare anyone, I too had been on Imuran for 10 years. My brother had been on Imuran for 15 plus years, he now has Squamous Cell Carcinoma, skin cancer. It started on his thumb, they cut that off, moved to his hand, they cut that off, he did chemo and radiation, then they just did a pet scan and he now has tumors all inside his body. Together with the doctor he has decided to stop all treatment and live the rest of his live as best he can. When I talked to my doc the response I got was, anymore it's not if you will get a cancer it is when? Thanks Doc!
Anyways, freaking me out a bit but what can you do? My doc said I would probably die sooner of a perforation.
Deb
Posted 7/19/2012 9:52 PM (GMT 0)
Oh dear god. Well, that's all our hard work of reassuring poor Will gone... >___>

(Sorry about your brother.)
Posted 7/19/2012 10:04 PM (GMT 0)
I was doing fine until I got to the second to last post and then found out about hepatosplenic T-cell lymphoma.

Geeze...
Posted 7/19/2012 10:05 PM (GMT 0)

porkysgal said...
I do not want to scare anyone, I too had been on Imuran for 10 years. My brother had been on Imuran for 15 plus years, he now has Squamous Cell Carcinoma, skin cancer. It started on his thumb, they cut that off, moved to his hand, they cut that off, he did chemo and radiation, then they just did a pet scan and he now has tumors all inside his body. Together with the doctor he has decided to stop all treatment and live the rest of his live as best he can. When I talked to my doc the response I got was, anymore it's not if you will get a cancer it is when? Thanks Doc!
Anyways, freaking me out a bit but what can you do? My doc said I would probably die sooner of a perforation.
Deb

If but when? Because of the Imuran?

I am sure age plays a factor here.
Posted 7/19/2012 10:22 PM (GMT 0)
Will, the cases of hepatosplenic t-cell lymphoma have been seen only in young males on both imuran/6mp *and* a biologic. The cases are quite rare, but yes, that one is scary (more scary) than other lymphomas because it is less treatable. If you are on imuran/6mp and a biologic and you're a young male, talk to your doctor about the risks/benefits.

Deb, sorry to hear about your brother. My father has had something like 30 basal cell carcinomas, 3 or 4 squamous cell carcinomas, and 1 melanoma (!!!). Yet he's never taken an immunosuppressant in his life.

Keep in mind that skin cancers are by far the most common types of cancer in the world. There is definitely a concern that imuran/6mp can increase that risk further, but I'm not aware of any studies looking into that. Recently, conferences have recommended that gastros tell patients on these meds to see dermatologists regularly. The best things to do to mitigate skin cancer risks are to avoid sun exposure and to check yourself and get exams to find them early.
Posted 7/19/2012 10:31 PM (GMT 0)

beave said...
Will, the cases of hepatosplenic t-cell lymphoma have been seen only in young males on both imuran/6mp *and* a biologic. The cases are quite rare, but yes, that one is scary (more scary) than other lymphomas because it is less treatable. If you are on imuran/6mp and a biologic and you're a young male, talk to your doctor about the risks/benefits.

Deb, sorry to hear about your brother. My father has had something like 30 basal cell carcinomas, 3 or 4 squamous cell carcinomas, and 1 melanoma (!!!). Yet he's never taken an immunosuppressant in his life.

Keep in mind that skin cancers are by far the most common types of cancer in the world. There is definitely a concern that imuran/6mp can increase that risk further, but I'm not aware of any studies looking into that. Recently, conferences have recommended that gastros tell patients on these meds to see dermatologists regularly. The best things to do to mitigate skin cancer risks are to avoid sun exposure and to check yourself and get exams to find them early.

What do you mean by 6mp and biologic?
Posted 7/19/2012 10:35 PM (GMT 0)
To pick up on what beave said, gastros don't give any warning about increased sun sensitivity to patients and they should do. A few years ago, when on 6MP, I fried the back of my right hand/arm resting it on a car door frame for 10 minutes in the sun. Later on, it looked as though the skin on it had aged by about eighty years. It did heal, but I do occasionally wonder if that little episode increased my future risk of skin cancer. Nothing I can do about it now, so I'm not scared. But it annoys me that, with a warning, it might have been avoided.

You heard me, folks: cover up or use sunscreen even more than you would normally when on an immunesuppressant.
Posted 7/19/2012 10:38 PM (GMT 0)
6MP (6-Mercaptopurine) is very similar to Imuran - in fact, 6MP is what Imuran metabolises (breaks down) to inside your body. Biologic = Remicade, Humira or Cimzia.
Posted 7/19/2012 10:42 PM (GMT 0)

NiceCupOfTea said...
6MP (6-Mercaptopurine) is very similar to Imuran - in fact, 6MP is what Imuran metabolises (breaks down) to inside your body. Biologic = Remicade, Humira or Cimzia.

so it is a separate drug from Aza? I am currently only on 50mg of Aza once a day and weigh 150 lbs. I have heard this is a pretty low dose?
Posted 7/19/2012 10:53 PM (GMT 0)
Yes, that's a low dose - too low to be effective, probably.

Dosing for azathioprine/imuran is typically close to your weight.

At 150 pounds, you would be on 125-175 mgs/day, most likely, unless there are other factors at play. Talk to your doctor.
Posted 7/19/2012 10:58 PM (GMT 0)
I think it is not just Imuran but anything suppressing your immune system is going to raise the risk of getting any kind of cancer. And yes of course the older you get the greater change of getting cancer also. My brother is 53 not old but not real young either. All we can do is try and take the best care of ourselves and enjoy your life as best as you can. I am no longer on Imuran as I had my second bowel resection in January but I am still on Cimzia.

Deb
Posted 7/19/2012 11:05 PM (GMT 0)
Yeah, 6MP and Imuran are two different drugs - they're about the same in effectiveness and safety.

50mg would be low for 6MP (which tends to be half the dose of Imuran), never mind Imuran. What beave said was right.
Posted 7/19/2012 11:28 PM (GMT 0)
I was directed to this by another site :


http://www.ccfa.org/assets/pdfs/risk...transcript.pdf

If I read this correctly, the risks run at abou 4/10,000 for JUST Aza/Imuran on its own correct?

This risk then, if you develop cancer, turns to 4 in either 400,000 or a few million for the H Tcell cancer for you males correct? or do you still need the biodrug in conjunction with the Azathioprine.

I know I am asking some obvious questions but I suffer from anxiety and am waiting for my klonopin to hit so I can calm down.

Being 24 with Chron's and Anxiety issues sucks.
Posted 7/20/2012 1:10 AM (GMT 0)
Are those lymphoma risks quoted specifically for crohnies or are they for the transplant population??

I ask becuase when I was deciding whether or not to try Imuran (I'm so glad I did!!) the risk was not as great for crohnies as for transplant patients due to lesser dosing for crohnies than for transplant patients.

Posted 7/20/2012 1:47 AM (GMT 0)
Link doesn't work, dude. You've got part of it missing. Better if you link to the page the pdf is on rather than the pdf file itself...

And yeah, CrohnieToo is right; transplant and cancer patients take the bulk of the risks with these immunesuppressing drugs because they are on higher doses than Crohn's patients.
Posted 7/20/2012 2:51 AM (GMT 0)
Shoot, my bad.

First link guys:

https://www.google.com/search?q=dwd+uplink&ie=utf-8&oe=utf-8&aq=t&rls=org.mozilla:en-US:official&client=firefox-a#hl=en&safe=off&client=firefox-a&hs=Mrj&rls=org.mozilla:en-US%3Aofficial&sclient=psy-ab&q=http:%2F%2Fwww.ccfa.org%2Fassets%2Fpdfs%2Frisk...transcript.pdf&oq=http:%2F%2Fwww.ccfa.org%2Fassets%2Fpdfs%2Frisk...transcript.pdf&gs_l=serp.3...3383.3383.0.3715.1.1.0.0.0.0.92.92.1.1.0...0.0...1c.oS5La39Qcxc&pbx=1&bav=on.2,or.r_gc.r_pw.r_cp.r_qf.,cf.osb&fp=f3c5fef7c285b366&biw=1467&bih=689
Posted 7/20/2012 3:44 AM (GMT 0)
That's... even worse >_>

Can't read it now anyway; off to bed, as it's seriously late. And I dunno if I'll be around tomorrow :-/ But if beave or someone doesn't check it first, I'll have a look next time I'm here.

PS: tinyurl.com is your friend here. Although the hideously long link does actually work, which I didn't expect.

PPS: http://tinyurl.com/cd9268f >_>
Posted 7/20/2012 4:54 PM (GMT 0)

NiceCupOfTea said...
To pick up on what beave said, gastros don't give any warning about increased sun sensitivity to patients and they should do. A few years ago, when on 6MP, I fried the back of my right hand/arm resting it on a car door frame for 10 minutes in the sun. Later on, it looked as though the skin on it had aged by about eighty years. It did heal, but I do occasionally wonder if that little episode increased my future risk of skin cancer. Nothing I can do about it now, so I'm not scared. But it annoys me that, with a warning, it might have been avoided.

You heard me, folks: cover up or use sunscreen even more than you would normally when on an immunesuppressant.

I've been on 6mp and am currently on remicade and methotrexate. I am fair skinned but do tan and am very much a sun worshipper. I do wear sunscreen but never higher than an SPF 30 and do indulge in tanning beds a couple of times per year. If I do get skin cancer one day it will be because I am at risk (fair skin, blue eyes, and well over 100 moles on my body). I for one do not believe these medication significantly up our risk of getting any type of cancer. I think the bigger problem is our whacked out immune systems.
Posted 7/20/2012 7:03 PM (GMT 0)
Jodi, I strongly, strongly encourage you to re-think what you are doing. Tanning, and tanning beds, are a *significant* risk factor for developing skin cancer. Since you are fair-skinned and have lots of moles, you already have two of the other known risk factors. Adding in immunosuppressants plus the use of tanning beds puts you at even greater risk.

As somebody who has seen my father and younger sister (who was still in her 20s) get melanoma, I can assure you that skin cancer is not something to take lightly.

Please re-think your sun and tanning habits.
Posted 7/21/2012 1:34 AM (GMT 0)
I suggest reading this article. It made a lot of sense to me and has guided me in my decision making regarding Cimzia.

http://programs.rmei.com/CCFA139VL/Transcript.pdf

Post Edited (Chris B.) : 7/20/2012 7:40:44 PM (GMT-6)

Posted 7/21/2012 3:55 AM (GMT 0)
I just started Imuran and have the same concerns.
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