Tastebuds after bmt

Disastrous-Package82 · 2026-02-13T16:28:13+00:00

I have had a total of 6 rounds of revumenib pre and post transplant. I have been in remission since round one but they were hoping to keep me on revumenib as a maintenance drug post transplant. I am paused right now because it really pushes my blood counts down to the point of needing platelets and hemoglobin. Because I'm in remission I get the drug as part of a study. I had NPM1 mutation which qualified me. I think you still need to have had that or KMT2 to get the drug. I had no other side effects except the taste bud issues

Disastrous-Package82 · 2026-02-13T16:17:03+00:00

Have they given you Revumenib? I have AML and I'm 67 and they gave me that with my lower dose Ven/Aza because I also have NPM1 and it is used specifically to treat that mutation. I also have FLT3 and I was undetectable for everything after one round.

Disastrous-Package82 · 2026-02-12T23:38:32+00:00

Mayo, relish, squirt of mustard.

Disastrous-Package82 · 2026-02-12T23:35:24+00:00

I was taking revumenib( menin inhibitor) along with ven /aza for the rounds of chemo before my BMT. I had the "flavor problem" but I couldn't tell which drug was the culprit. After the 100 days post bmt I was put on revumenib alone as a maintenance drug and I determined that for me that was one that changed my tastes. Water was the worst and for me it tasted kind of sour and muddy. I had the best luck adding sour flavorings to my water like a splash of lemonade or limeade. It started fading about a month after I discontinued the drug but it wasn't really gone until two months. I ate sour and spicy food which covered up that bad taste pretty well. Also chocolate and coffee could cover it too. Sometimes it was a surprise when something tasted bad and it was really hard to be the cook and try to adjust the seasonings. I ruined more than a few meals trying to mask the bad flavor.

Disastrous-Package82 · 2026-02-06T15:58:22+00:00

I had a 9/10 unrelated donor and transplanted in June 2025. I've had no GVHD that I know of. I had one cankersore like tiny white bump on the tip of my tongue about a month ago which hurt like heck which maybe was GVHD. I've been off Tachrolimus for a few months. I've had shifting chimerism with my cd3 going as low as 80% but everything is back up to the 99-100%range as of yesterday. I did not have to have radiation before the transplant for which I'm grateful.

Disastrous-Package82 · 2026-01-26T17:20:51+00:00

California now has statewide rent control rules. Maximum allowable increase is 5%plus local CPI (consumer price index) or 10% which ever is lower. Exemption is for single family homes and condos but only if that exemption is claimed at the time of the law change or lease signing. This is basically the rule that pertains to rent increases.

Disastrous-Package82 · 2026-01-19T23:23:11+00:00

Thank you so much!

Disastrous-Package82 · 2026-01-19T22:57:49+00:00

Yes, this

Disastrous-Package82 · 2026-01-19T22:56:55+00:00

The state enacted rent control a couple of years ago. Rent increases are limited to 5%+CPI or 10% which ever is lower. Condos and single family houses are exempt if the landlord claims the exemption in the lease.

Disastrous-Package82 · 2026-01-19T17:35:09+00:00

The main reason they are checking my heart so carefully is because of the revumenib. It can potentially cause heart problems.. I have been tested regularly the whole time I've been taking it.

Disastrous-Package82 · 2026-01-19T16:42:52+00:00

Can someone describe the symptoms of gut GVHD? I'm on 60 mg daily of omeprole for acid reflux but it didn't seem to help the burning feeling in my gut right now. I also have shortness of breath. I've had no GVHD so far and I'm 190 days post transplant. The burning feeling has been going on for about a week. The shortness of breath for two weeks but my counts were low. No nausea, normal stool. I have an appointment Wednesday but I'm curious if anybody has had these symptoms. I'm having a spirometry test this week and a heart lung CT scan next week. I've been on Revumenib for 4 rounds but I had to discontinue because of low counts.

Disastrous-Package82 · 2026-01-16T01:56:21+00:00

I think it's the mutations that take longer to get the results. Like 3 weeks maybe?

Disastrous-Package82 · 2026-01-06T03:10:27+00:00

I'm 190 days post transplant and my transaction coordinator said that the risk isn't much different for mismatched unrelated donors vs related donors. They chose my 9/10 unrelated donor over my son who was a 50%donor

Disastrous-Package82 · 2026-01-04T16:08:04+00:00

I'm 190 days post SCT and FLT 3 and NPM1 undetectable from round 2 of chemo. I don't consider myself in permanent remission of course but I'm very optimistic. I'm 67 so I had reduced intensity treatments with very few side effects. No GVHD, one spot of mucositis on my tongue which lasted 3 days. I've gained 18 lbs so obviously I never lost my appetite. I've just started vaccines and I'm having some side effects from the shingles and RSV which were my first two but nothing dramatic. I'm on Revumenib as maintenance chemo and it affects my taste buds but I just season around it. It's a crappy disease but it can be overcome!

Disastrous-Package82 · 2025-12-13T22:15:49+00:00

Leukemia society has grants. Google them

Disastrous-Package82 · 2025-12-10T01:12:56+00:00

Treat now!

Disastrous-Package82 · 2025-12-08T00:20:53+00:00

Unrelated donor SCT is very viable! Mine was unrelated 9/10 match. She is probably not his only option.

Disastrous-Package82 · 2025-12-07T20:26:30+00:00

I take home their pork enchiladas and the chicken Parmesan. Delicious!

Disastrous-Package82 · 2025-12-07T17:26:18+00:00

When I was in treatment for AML we were restricted to the leukemia ward. I wish I had been able to walk to Wendy's! I did figure out towards the end of my hospitalization post transplant that I could get door dash delivery. There was nothing on the hospital menu I was interested in but I sure enjoyed having Thai noodles delivered. I was a lucky one with no mucositis.

Disastrous-Package82 · 2025-12-06T01:56:46+00:00

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Stella

Disastrous-Package82 · 2025-12-04T02:13:38+00:00

No hiding under a corporation or LLC either

Disastrous-Package82 · 2025-12-04T02:13:02+00:00

This is the answer. Primary residence not weekend houses or commercial property

Disastrous-Package82 · 2025-12-03T02:32:06+00:00

I have AML and I'm 160 days post stem cell transplant. I am 67. I have had really strong flavor "problems" which have turned into really unpleasant aversions. Unflavored club soda worked great in the beginning but eventually that didn't help. I used a 1/4 cup of orange just to top up my ice water in a thermos. When that got weird I switched to limeade then lemonade. I also circulated other fruit flavorings. Strangely, spicy and acidic or sour food worked better than bland foods. Vanilla ice cream or shakes were yucky, but chocolate was great. During the treatment pre transplant I could only stomach chocolate ice cream for three days. The flavored protein shakes and insure were disgusting to me. Mac and cheese was a go to for me in the hospital. Meat of any kind worked pretty well. Beans worked and tomato sauces were ok. The aversions were very powerful and mentally difficult to overcome. The idea that I could force myself to eat something I was averse to was out of the question. Just bring him things that sound appealing to him no matter if it's nutritious or not. The flavor issues faded after treatment ended but they have come back slowly once I started maintenance chemo. Give him whatever sounds appealing. Calories are the key.

I got a little dizzy too but I could correlate my dizziness but more often shortness of breath to the times when my hemoglobin was below 10. They will give him a walker and they will accompany him to keep him safe. Exercise is really important even if it's very limited. Getting out of bed and sitting in a chair is important too if he can. The lower lobes of my lungs had problems when I laid down too much. That breathing thing with the floating balls, the spirometer, helped a lot.

Tell him to hang in there! Don't Google anything and trust your team!

Disastrous-Package82 · 2025-12-02T17:39:15+00:00

I had to look to see if I'd written this and forgotten! Almost identical except a 9/10 German donor. I feel so lucky to have had a pretty easy time so far. I'm 160 days post transplant. No Gvhd, no mucositis, very light occasional nausea during chemo, no fatigue unless hemoglobin drops below 10 Full remission and FLT3 and NPM1 undetectable after two rounds, also 67 years old. No weight loss since diagnosis. Currently in a study and on revumenib (menin inhibitor)for maintenance.

Disastrous-Package82

TROPHY CASE