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Three year post-transplant visit update

Hi All,

I am happy to report that my 3 year post-transplant visit to MD Anderson went very well. My PET and PCR were both negative. Of course the doc still wants me to continue taking 80mg Sprycel bid. No big deal though, at that dosage I hope to have very few side effects.

Now the chronic GVHD is another story. I have GVHD of the skin, eyes, and mouth. I saw the ophthalmologist while I was there and she prescribed ciba night and day soft contact lens (no prescription). This contact is very effective for holding the moisture over the cornea and reducing the dryness (I have 0 tears being produced at this point). They have been a God-send. My eyes have remained moist and I have been able to see quite well. I pray they continues to work.

To treat my skin and mouth, the doc has put me back on a minimum dose of tacrolimus (anti-rejection drug used at transplant). Hopefully this will reduce the GVHD and give the immune system time to fix the problem. I should be on it for approximately a year. If, that doesn't work, then there is another protocol called photopheresis that has been quite successful.

I return early next month for another check-up to see how the GVHD treatments are working, then every 4 months after that for the next year or so.

My wife and I met Lottie and Jimmy Duthu while we were there and went out to dinner together. We really enjoyed their company.

Blessings Everyone,
Don

Hi Don

I was on tacrolimus for GVHD - exactly the same idea as your man proposes - I was on 1mg twice a day at first then reducing to 1 mg once per day then 0.5 mg once per day then 0.5 mg alternate days and finally stopped it - about 9 months in all - it worked for me so the very best of luck.

Russ

Thanks Russ, sounds like the exact plan my doc has for me.

Have a great Holiday season!

Don

Hi Don,

Sorry to hear about your GVHD.

My Son, Aaron underwent BMT approx 4 years ago and also had severe GVHD of the mouth, and also the gut.

He suffered very badly with no saliva and this caused problems with eating food etc.

I seem to remember his consultant tried something a bit unusual for it. She prescribed him eye drops (i cant remember the name of them at the moment but i will try to) with a drop of water to be taken by mouth. This was questioned by all the nurses and the pharmacist as they all thought it was an error by the consultant, however I do seem to recall it working for Aaron.

I will try to remember the name of them and try to find the article that our Dr found relating to this.

Kind regards

Jayne

Thanks Jayne....

Hi Don,

I just wanted to let you know that I havent forgotten about you and I have e mailed Aaron's Consultant, who has been away on leave.

How are things now?

Regards

Jayne