No sense of taste or smell issue

[yahtzee]

Hello to everyone out there...

I had a transplant in June 2006. No real lingering affects yet, except for one thing. I can't taste or smell anything. I was able to before the transplant but seemed to have lost those senses somewhere along the way! :(

Just curious, has anyone heard of this happening?

[Ruth Cuadra]

Hi, Yahtzee.

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

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.

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

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.

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.

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

[yahtzee]

Originally Posted by Ruth Cuadra

Hi, Yahtzee.

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


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

Thank you for the information, Ruth. I'll check out the website you referred me to.

Remember when I talked to Dr. Deeg in Las Vegas during the small group? He emailed me the next week. What a nice man! Anyway, he had this to say:

"I have since then spoken with Dr Flowers who is the Clinical Director of our Long-term Follow-up Program. She indicates that she has seen a very rare case where a patient had lost the ability to smell, and we really don't know what the prognosis is. Of course, as you know, taste and smell interact very closely; thus, it is still possible that with some recovery of taste there may also be some improvement of the smell sensation."

Like I told Dr. Deeg, my lack of smell and taste is a bit of a nuisance but I survived AML and a transplant so I can live with this minor problem. There could be worse things. Hopefully it'll come back sometime.

Take care. It was great to see/talk to you again. See you in DC at the next conference!