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Old Mon Aug 20, 2007, 11:30 PM
Ruth Cuadra Ruth Cuadra is offline
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Join Date: Jul 2006
Location: Los Angeles, California
Posts: 616
Hi, Yahtzee.

I posted your question to the GVHD listserv today and got the following responses:

Quote:
I've had quite diminished sense of smell and taste. I don't recall if it was post transplant or post chemo for AML when I noticed it, but I'm 2.5 years out from transplant and it is still not back. I can smell really strong things and do have some sense of taste, but the intensity is not there. I'm actually thinking about getting an assistance dog who would let me know if the smell of fire was present! Maybe it's cancer related. Maybe it's not. I just don't know and nobody has ever told me of any connection. Hope your friend is doing well.
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my smell and taste have been off, thought it was due to the antifungals, but don't really know. If I taste things with my eyes closed I usually can't tell what it is so it is not unusual.
(name withheld) aml sct 10/05 gvhd 2/06
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I had MUD SCT on 7/25/06. For eight months I had no taste buds at all. Now that my taste has returned, though, I've noticed that some foods still do not taste as I remember them. I do not recall any problems with smell though.
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I'm 7 years post stem cell transplant, and I had a severely reduced sense of taste and smell following the transplant. It is coming back, albeit slowly. But things do not taste the same way they did before the transplant. I now choose a lot of the foods I eat based on texture. Chocolate, something I loved before the transplant, just doesn't taste right anymore. Same way with beef, some fish, coffee and tea. No one has ever been able to tell me if there is a connection or the cause.
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I had the same problem after my transplant and it lasted for quite a while but it eventually went away. Then just this summer, my taste disappeared again for a couple of months. It is now back. I don't know how or why this happens and I keep forgetting to ask my doctors about it. One good thing though for me is that I lose weight when this happens as my appetite is affected as well.
Overall, I hope it's helpful to know that this problem is not unheard of. As with many post-transplant issues, whether they are diagnosed as GVHD or not, it often takes a lot of time before any improvements can be seen.

If you'd like to join the GVHD listserv, go to http://listserv.acor.org/SCRIPTS/WA-...UBED1=gvhd&A=1.

Regards,
Ruth
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Diagnosed AA 10/96, MDS/RA 6/98, MUD/BMT 10/6/98
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