Friday, October 14, 2011

Day +49

My labs looked good this week. The chimerism testing takes longer than I thought so the results still aren't back yet. I'm just about completely over the cold (throat is still slightly red). I'm still feeling better overall each day. My hair started growing back, which I'm happy about since the weather isn't cold yet.
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6 comments:

  1. ShakesandStonesOctober 19, 2011 at 1:23 AM

    Hi Patrick,

    I have read your blog and found it really interesting. It sounds like quite an ordeal and I hope that it all works well for you.

    I noticed reading your blog that you are currently taking cellcept. I was on that drug about two years ago and found it caused havoc with my stomach and intestines, and I would think as a crohn's patient this would be a problem for you. Is this just a recognised side effect that you have to deal with or the best of a bad bunch of options?

    Best of luck for the future

    Andy

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  2. PatrickOctober 20, 2011 at 12:48 PM

    Andy,
    Cellcept, as well as the antibiotics I'm on, can mess with your stomach. They aren't hindering the stem cells' work, though. The benefits of preventing graft rejection and taking prophylactics generally outweigh the side effects. I'm tolerating them all pretty well for the most part but it's important to keep taking them (or a substitute if the side effects are a bigger issue) during recovery. All of that is probably affecting my stomach to an extent, but not the healing that's taking place. Improvement may just seem a little more sporadic while I'm on them, but I would feel better once they were discontinued if they were causing me issues. Good question.

    Take care,
    Patrick

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  3. ShakesandStonesOctober 21, 2011 at 1:40 AM

    Thanks Patrick,

    I'm glad to hear you are tolerating the drugs OK. I was curious as to what your milestone dates were. eg.

    1 When do you cease the drugs?
    2 When is your immune system back to full strength?
    3 When do you know if the treatment has been effective?

    Cheers

    Andy

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  4. PatrickOctober 21, 2011 at 4:20 PM

    There aren't any set dates for those things. I'll stop the medications between 9 and 12 months post-transplant, at Dr. Burt's discretion. It's a bit tricky about when my immune system will be at full strength. Some of these medications are immunosuppressant, so stopping those will be one step. I'll be checked for my childhood vaccinations at 1 year post-transplant to see if I need those again. Even once that all takes place, my immune system will still be pretty new so it may not be on par with the average adult's, but it will be strong enough where I no longer have any restrictions.

    It's possible I won't know the exact extent of how effective it has been until a year post-transplant, but I already feel so much better even without Crohn's medication. Aside from judging by symptoms, the colonoscopy/CT scan at followups (6 month, 12 months, yearly) will provide something to compare against previous tests. The stem cells can be healing things for up to a year and, like you mentioned, the medication side effects can be problematic. It's expected to be slow, gradual improvement at this point. More good questions!

    Take care,
    Patrick

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  5. ShakesandStonesOctober 24, 2011 at 7:39 PM

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  6. ShakesandStonesOctober 24, 2011 at 7:41 PM

    Thanks Patrick,

    Although I don't have Crohn's disease I do have an auto immune disease that attacks my nervous system instead of my bowel. It is called CIDP. One of the possible treatments for this is stem cell transplantation so I have been particularly interested in your blog. I have blogged about my own medical issues at www.shakesandstones.blogspot.com if you want to learn more.

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