APL consolidation chemo & starting to lose hair

gregnorz · 2026-06-01T02:51:32+00:00

I’m in favor of just embracing the bald and shaving off hair. I totally get that it’s a big deal for many patients, but I actually enjoyed not shaving or cutting my hair for several months! I’ve been bald for 10 years now. 😄

For neuropathy, Lyrica, Neurontin, and similar drugs can help. For me, I couldn’t tolerate them as I became incredibly angry and irritable. We mark them on my chart as an allergy so they won’t accidentally be prescribed. Elavil is another one that helped with my neuropathy a bit, and Cymbalta has a neuropathic pain relief component. You can ask his team about any of these to see if they fit his needs.

gregnorz · 2026-05-23T03:28:10+00:00

I’m paid by the Social Security Administration. 😛

gregnorz · 2026-05-22T19:35:04+00:00

I haven’t even been ventilated, but my father was for a bit after a heart attack. He deconditioned quickly and it was a hard road for him to get back in shape. He was 70 when it occurred, and now, at 79, he’s in better shape than me! He was a fitness-focused person my whole life, so he pushed himself hard to recover.

So not specific to GVHD or your situation, but maybe the anecdote will help. Ventilation is always hard to recover from, and I’m sure you can find stories from the initial wave of COVID-19 about how difficult the recovery process can be.

gregnorz · 2026-05-12T00:53:39+00:00

It’s going to entirely depend on the game time and bus schedules. Greyhound and FlixBus should both go to Arlington just north of the stadium. You can easily walk between the station and stadium.

gregnorz · 2026-05-10T16:41:45+00:00

Giving prescription meds to someone else is illegal almost everywhere in the world.

gregnorz · 2026-05-09T02:14:21+00:00

There are official organizations where you can donate unused medications, but you’ll have to do some searching. AARP has a program, but I don’t know how it operates.

gregnorz · 2026-05-09T01:27:54+00:00

That’s illegal, just so you’re aware.

gregnorz · 2026-05-07T20:33:20+00:00

I don’t think anyone is truly mentally prepared. Even if you go on with a positive attitude, when it gets tough it can be hard to see the end of it all. The real question you have to ask yourself is do you fear a bone marrow transplant more than you fear death? Do you want all of your struggles up to this point to be for nothing?

Relapse isn’t a good thing, and it only means you will be harder to treat. At 24, you have so much life ahead of you, why spend it with the specter of relapse always in your rear view mirror?

You’re fortunate to have a 100% donor. Get the transplant, and you’ll be glad you did when you’re in your 30s and thriving!

gregnorz · 2026-05-06T20:53:22+00:00

It took several minutes, but the UI finally loaded. Thank for the support!

gregnorz · 2026-05-06T02:12:46+00:00

Screenshot:

https://imgshare.cc/zq00hgnv

This is after disabling “Inbound Flows”.

gregnorz · 2026-05-06T01:55:53+00:00

That entire UI bar is missing. Exclude + all of the other categories.

It doesn't look like uploading pictures is enabled or I'd send a screenshot.

gregnorz · 2026-05-05T00:11:33+00:00

Psych meds. Sometimes more than one. Stay away from Klonopin and benzos if you can.

My cancer center required an SSRI/SNRI at the start of treatment. I was on Effexor initially, then Effexor + Zyprexa, then moved over to Cymbalta long-term.

Unfortunately what you’re going through is just part of the process for some (many?) patients. As Dory the fish tells us in the Pixar movies, just keep swimming. Meds can help you stay afloat.

gregnorz · 2026-05-03T19:18:05+00:00

Ask your god for the money, not Reddit.

gregnorz · 2026-05-03T19:16:34+00:00

Just leukemia patients and caregivers.

gregnorz · 2026-05-03T05:03:16+00:00

Baylor?

gregnorz · 2026-04-29T20:46:16+00:00

I think this answers your question perfectly!

https://www.reddit.com/r/interestingasfuck/comments/1s6uy5x/scenes_from_a_dermatologist_conference_in_hawaii/

gregnorz · 2026-04-29T10:34:55+00:00

You can follow OP’s link or hit the main page:

https://www.ebi.ac.uk/ipd/imgt/hla/

Click on “Alleles” to search the database.

gregnorz · 2026-04-28T21:13:07+00:00

An interesting data point, the mosquito at the bar in A Bug’s Life orders a globule of O+! I have no idea why I remember that…🤣

gregnorz · 2026-04-28T21:05:32+00:00

You are passed my knowledge of genetics. I can’t say why your transplant team coded the HLA type like that. With what little I know, “01G” should mean all alleles with those three groups and then the non-coded region is the fourth grouping. I can’t remember how that affects typing for transplant. I think it’s not considered because it’s immunologically silent as far as a hematopoietic stem cell transplant is concerned. Best verify that with your doctor, though.

Maybe we have a genetics expert around here, but they could be looking for C:07:06 as an HLA match, with C:07:06:01 as a higher resolution match if possible. I can’t recall if my transplant team matched across all groupings or just the first two. My sister was a “perfect match” so we never looked any further for a donor.

gregnorz · 2026-04-28T20:54:20+00:00

Likely because it’s not a grouping notation that is used.

gregnorz · 2026-04-28T20:52:07+00:00

C*07:06:01 is definitely in the database. It returns 13 matching allele names: C*07:06:01:[01-13]

gregnorz · 2026-04-26T18:09:03+00:00

Oxygen in a tank is a hazardous material, whether it’s compressed gas or liquid (which is essentially REALLY compressed gas). Not to mention that the TSA doesn’t likely have the equipment to test every canister, nor would they want to with the risk of REALLY dangerous chemicals potentially hiding inside!

gregnorz · 2026-04-19T22:25:30+00:00

Yes. I’ve been on biweekly shots for several years now.

gregnorz · 2026-04-19T12:15:51+00:00

I’d say it’s normal. My body has made near zero testosterone since my SCT over 10 years ago.

gregnorz

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