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Posted 9/17/2013 11:49 PM (GMT 0)
Hello out there in UC land,
I have been confronting a serious dilemma for about three months. At present I am on 100 mg of Imuran (been there for 11 weeks) and 11 mg of prednisone. I am tapering the prednisone because my mental and emotional health have become extremely compromised by anxiety and depression. Yes, I'm on meds for those conditions. Problem is I cannot seem to get symptom free. Bleeding and mucous come and go. Frequency up and down from 4-8 BMs daily. Urgency continues. GI I consulted in Denver said to up Imuran. My local GI says I have enough in blood. Next step would be Remicade, but I had malignant melanoma 5 years ago. Oncologist gives clean bill but the risk of biologics seems too dangerous. Has anyone out there been in a similar place? Did you go with biologics? I am on medical leave for 6 more weeks and really need a path to recovery.

MEDS:
Asacol 48oomg daily; Canasa suppositories nightly; up and down on steroids for 18 months. At 11 mg now and tapering down monthly. 100 mg Imuran;7.5 mg Klonopin; 20 mg BuSpar
Diet: no gluten only dairy is Goat's milk yogurt and goat's cheese.
Posted 9/18/2013 2:26 AM (GMT 0)
Were you tested to see about the levels of Imuran in your system, or is the doctor just saying that? Imuran itself can bring on cancer sometimes as well as the biologics. Are you sure that no gluten or dairy is actually helping you? I can't help but think that since your condition is not so great that the diet thing is more in your head than an actual help, although many UC'rs do have a problem with dairy. Unless you know for sure that going gluten free is actually helping then you are probably doing it for no real benefit, UC wise anyway. Have you thought about Uceris? That may be a good next step. As far as your Remicade question I would contact your Oncologist for their opinion.
Posted 9/18/2013 2:43 AM (GMT 0)
I wish I had a a proper answer... It's not right. To have to face these decisions. Always the hardest part about coming here. Reading these types of posts and anything involving children.

Here's is all I can offer. For the time being, to be honest there's a high probability (90%+) of nothing "alternative" working - or the process will be so frustrating and long with trial and error that you may never find a path to recovery. It sucks to even have to say this, but I would ask yourself, and I mean really, really ask yourself a quality of life question. But ask it like this:

Picture yourself in remission, happy, and able to work and get back to life. And then ask yourself where will you be, what can you accomplish with just these three things if you had one or two+ years like this? Or longer if the biologics work great for you.

Then picture yourself continuing on exactly as you are now - and flash forward one or two years. Will you be able to accomplish the same things? Will you be happy? Could you even endure it?

Your answer will be found between these. And more specifically, can, and are you willing to endure? Or would you rather take a big step with a minimal risk and see just how far you can get?


Sometimes to move forward we have to take a chance, step over our fears - and not look back. Focus on the positive - ALWAYS.
Posted 9/18/2013 2:44 AM (GMT 0)
Oh - And ask your GI and Oncologist point blank - what would they do in your shoes. As Gary mentions.
Posted 9/18/2013 3:27 AM (GMT 0)
Truly review the stats on lymphoma. Do they apply to you? There is keys a "first", but th benefits are documented. Seek high level counsel.
Posted 9/18/2013 12:50 PM (GMT 0)
MizBee, you need to take the risk and benefit of medications like Imuran and Remicade into account. Yes, there are increased odds of obtaining lymphoma from those medications but what you aren't considering is the odds of getting that condition. As far as the lymphoma risks with Imuran/Remicade, you are worrying about something that is statistically unlikely to occur/remote. Where as the odds that those medications will help improve your quality of life are much, much higher. I highly recommend you read the "Balancing the Risks and Benefits of Treatment for Inflammatory Bowel Diseases" from the Crohn's and Colitis Foundation of America:

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

Some key snippets:

Slide 21: Main Side Effects of Anti-TNF Treatment
I think malignancy is the most concerning to both patients and providers and families when you think about starting a medication that might actually cause cancer, which is a scary thing to think about. But to remind you of the baseline risk, meaning those people walking around on no medications at all of non-Hodgkin’s lymphomas, about 2 people out of 10,000 (or 0.02%). On the immunomodulators, it’s about 4 people out of 10,000 (or 0.04%). If you’re using anti-TNF medications along with immunomodulators, although the risk is a little bit higher, it’s still about 6 people out of 10,000 (or .06%).

Slide37: Putting Risk in Perspective
The chance of dying over your lifetime from a biking accident is 1 per 5,000; drowning, 1 per 1,000. And believe it or not, in the US, the chance of dying in a car accident is about 1 out of 260. The chance of dying from cancer is 1 out of 8, and the chance of dying for heart disease is 1 out of 5. Now, remember this isn’t patients with Crohn’s disease. This is people in general. So when we’re talking about side effects of medications on the order of 1 per 10,000, 6 per 10,000, we’re taking extremely small risks.
Posted 9/18/2013 1:02 PM (GMT 0)

Canada Mark said...
Oh - And ask your GI and Oncologist point blank - what would they do in your shoes. As Gary mentions.

Good luck getting a Doctor in the US to answer that question, you won't find too many doctors willing to answer that.....they are pretty good about dodging questions like that and it probably has to do with liability issues.

If it was up to me I'd inquire about surgery with a surgeon and see if that is a good alternative for you personally. about 25%-30% of UC patients will require surgery in their life-time for UC, it is a much safer surgery now than it was 20+ years ago and outcomes very good statistically 95%-97% successful with most of failures being mis-diagnosis that should have been Crohns.
Posted 9/18/2013 1:10 PM (GMT 0)
MizBee,

I would strongly urge you to look into LDN, low dose naltrexone.

It put me in remission.

BUT you have another reason to take it too: your malignant melanoma.

LDN does not suppress the immune system, and it's been shown to help put cancer in remission too.

So, imo, for you, you'd be killing 2 birds with one stone.

If you are interested in reading up on LDN, there's a post on it on the UC Resources page (towards the bottom).

And if you still need more info, email me and I"ll be glad to help you.

BTW, regarding your depression and UC actuallly, , when were your vitamin d3 levels checked last?

BOth have high correlations to low levels of vitamin d3.

 

Posted 9/18/2013 3:26 PM (GMT 0)
Thank you to all for the input. ks1905 my GI has had cancer and understands my position and says he would take it. My oncologist says the same. So it just feels overwhelming to have to make such a decision. As regards looking at present quality of life Canada Mark, I am 61 and have three wonderful adult sons. I had hoped to participate in their lives for at least another 20 years. Never any promises out there. Still only having a year or two with them feels like a cheat. It makes surgery seem more desirable. As far as LDN I am not sure I am looking in the right place InSoFla. I put it in the search and there were a number of posts. I read several. Not exactly an information site. I do not know how to email members. Did not sleep last night for stressing over this decision. Some days I think I will never feel the normalcy of life return to me. I am at home 75% of the day trying to keep my system relaxed and fed enough to not lose another pound. Friends visit and my husband has been a saint, but I need a better path. I want to teach again and not wear diapers.

cry
Posted 9/18/2013 5:43 PM (GMT 0)
MizBee, I totally understand.

Alot to think about for sure.

If you want to email me: [email protected]

 

Posted 9/19/2013 4:53 AM (GMT 0)
I'm not an oncologist (I'm a cancer biologist), but I would actually think that your risk of lymphoma is probably not much higher than anyone else's, even if you did have melanoma. Different tissue/cell type is affected.

It does sound like you're trying everything to avoid being on the biologics. I can't think of anything you haven't tried that would be a next step besides biologics or surgery. I'm sorry :(
Posted 10/7/2013 9:16 PM (GMT 0)

The medications Remicade and Humira more than triple the risk of cancer and double the risk of a serious infection, says Eric Matteson, a professor at the Mayo Clinic in Rochester, Minn., and an author of the study. Cancers were more common at high doses.

According to the report, doctors could expect to see one additional case of cancer develop within six to 12 months of treatment for every 154 patients who take the drugs. Doctors could expect to see one serious infection, such as pneumonia, within three to 12 months for every 59 patients treated.

 

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