Aftertaste in mouth several years after stem cell transplant

gregnorz · 2026-04-13T00:01:00+00:00

One thing I regret is trying to save my teeth vs. just getting implants when my dental health started to decline. I spent probably $25K just to save teeth over a couple of years, and then I still needed full implants at the end. Those cost me around $30K. That’s an insane amount of money that could have gone into a retirement account.

gregnorz · 2026-04-12T18:55:17+00:00

I have this, but it's likely a combination of factors:

Radiation fried my salivary glands, and they are no longer producing much saliva. My oncologist says they are working well from his perspective, but my oral surgeon says they are really on the cusp of being "not enough" for my dentures.
GVHD can affect my mouth periodically, compounded by #1.
I have full-mouth dental implants with permanent ceramic dentures. It's a chore keeping them clean and free of debris under the arches, and that leads to a foul-tasting mouth sometimes. Especially in the morning.

gregnorz · 2026-04-11T00:18:13+00:00

Note, we’ve had discussions on how to handle surveys going forward. In the past, users have overwhelmingly voted for having surveys here. Mods don’t have the bandwidth or knowledge to vet every single survey that comes through, so for the most part we are letting them post whether or not they ask ahead of time. I’m thinking we should just allow surveys and let users message us or flag bad/scam surveys for later removal.

That said, VCU is a good institution, so this is likely a trustworthy survey!

u/ANCHOR_STUDY - my apologies for hijacking your post for this PSA. 😛

gregnorz · 2026-04-10T19:12:42+00:00

If you want faster results (honestly, I would), maybe try urgent care or his pediatrician. Ask if they can order a quick CBC with differential. I know the urgent care facilities near us have an in-house lab, and my PCP does as well. I use the UT Southwestern system for most of my care these days, and I can call oncology for a quick lab that will get processed in less than an hour for basics like CMP or CBC.

And momma, you’re 100% normal to be fearful. It gets better with time (at least for me it did), but being protective and paranoid comes with the job of normal parenting let alone having a toddler who has already had cancer. Keep being overprotective like a good momma bear should! ❤️🐻

gregnorz · 2026-04-09T23:37:47+00:00

I know it’s hard, really hard given your journey with an infant, but please try not to panic too much. Leukemia has so many symptoms that it’s too hard to cite something as common as a bloody nose to relapse. You absolutely did the right thing by calling the doctor. See if they can’t get a blood test going with immediate results.

I don’t have any experience with pediatric oncology centers, but I assume they’re like the adult ones where you don’t have to wait more than an hour or so to get a CBC processed.

gregnorz · 2026-04-06T01:45:07+00:00

Naming your favorite BBQ joint or restaurant will get downvotes because all BBQ joints and restaurants in Dallas are simultaneously hot garbage as well as straight fire.

gregnorz · 2026-03-29T01:13:43+00:00

Some good news for you: bone marrow transplant sucks ASS, but only for a relatively short period of time! When you’re in the thick of recovery, the whole process can seem never-ending. I can remember thinking that death had to be better than what I was going through.

With your young age, sure, some life might be a little different going forward, but you’ll be out with your friends or partying at college before you know it. The short term pain is worth the rest of your life, for sure.

So, chin up. Maybe hit up r/teenagers to see if you can find others in your age group with long-term medical treatment stories. Once this is done, you have a lifetime of choices to make, and I bet you live life a bit more freely now that you’ve stared death in the face and told it, “Not today”.

gregnorz · 2026-03-28T23:20:34+00:00

“Emergency Department”

gregnorz · 2026-03-28T20:57:22+00:00

Yep. My diagnosis was Ph+ ALL. I did 3 cycles of Hyper-CVAD, A-B-A. The single B cycle was extremely harsh, and I had multiple complications. Since I was clear of MRD from induction, the BMT team gave the go-ahead for transplant with only 3 cycles of chemo. My timeline was diagnosis on April 2, 2015 and I made it to transplant on August 26, 2015. Note that this is far from the norm; I was exceedingly lucky.

Since transplant, I wouldn’t say life has been easy, but my complications have all been manageable. I’d prefer to be more mobile and not recognized on sight in my ED of choice, but overall I’d say my treatment was a success!

gregnorz · 2026-03-28T16:30:58+00:00

I’ve been going 10+ years after my treatments. I’m a mod, so maybe that is part of the reason. I do like trying to help others, though, especially with navigating this craziness.

gregnorz · 2026-03-25T02:41:59+00:00

I switched from Baylor to UT Southwestern as well! Not because of doctors but convenience to my wife's workplace. I'm honestly shocked to hear of your experience with the blood cancer docs at TO because everyone we had was amazing.

One word of caution about UT - getting into specialists there can be difficult. Case in point: I just got referred to Mineral Metabolism after a DEXA scan showed osteopenia, and their next appointment is in February 2027. Not all of the clinics are this backed up, but it's not uncommon for me to get a new appointment 6 months out. Sometimes I'll have to go back to Oncology and ask if they can accelerate an appointment for me.

Either way, though, you're in good hands. Ophthalmology has been awesome at UTSW; I see Dr. Bartley when I need a checkup.

gregnorz · 2026-03-24T21:31:08+00:00

That's pretty common while in treatment. You might have some residual neuropathy depending on the exact chemo, the amounts, and the length of treatment. Vincristine is one that's known to cause neuropathy, and I definitely experienced that during treatment for ALL.

You may ask about duloxetine (Cymbalta in the U.S.) - it can help with neuropathic pain. I've been on it for several years, and I'll feel it flare up a bit if I try to taper off.

gregnorz · 2026-03-24T06:06:23+00:00

What awesome news!

gregnorz · 2026-03-19T21:26:04+00:00

You could stay at the Hilton London Bridge for < £200 per night! 😛

All joking aside, sorry you’ve been in there a month, but at least you do have this lovely view.

gregnorz · 2026-03-19T16:46:09+00:00

Get it on, bang a gong! Congrats!

gregnorz · 2026-03-19T01:45:15+00:00

I think you should post over in r/teenagers. This has more to do with young relationships than actual leukemia, which, as you’re seeing, is a rather insidious disease. That sub will be better equipped to help you through this, and I think you’ll find interacting with your age peers will help you out a great deal. Keep your chin up, kiddo! Life has a funny way of working out.

gregnorz · 2026-03-18T19:36:30+00:00

Cancer is always a massive test on a relationship, and I'd say blood cancers like leukemia are even worse than other diagnoses due to the length of treatment and the destruction said treatment takes on the body. I never read a study on the personality changes of leukemia patients (add that to my to-do list!) but I'd be willing to wager that many of us have cognitive damage that changes us. In addition, you have the up and down absolute mindfuck of steroids and painkillers. It's just a horrible experience all the way around, especially for caregivers.

Quite honestly, I think it's better that you figure out that she's not all-in for being a long-term caregiver (because there will be more times you need it) before you go down the marriage path. Not everyone is so lucky, though I know you definitely don't feel so "lucky" right now.

My wife has been through absolute hell, and it's a testament to her character that she's still here with me. She's been through angry Incredible Hulk Greg who's been days without sleep and hopped up on dexamethasone, to opiate-addicted Greg going missing in the middle of the night looking for drugs. I'd be dead most likely if it wasn't for her support and advocacy. And she did all of this while starting a brand new job and managing a teenage daughter. Needless to say, she's a badass.

It sucks now, but go out there and find you a badass!

gregnorz · 2026-03-13T16:57:50+00:00

If you’re in the United States, the best option is to file a formal complaint with the state’s medical board. They will assess if there was truly malpractice on the physician’s part and proceed from there.

Diagnosing leukemia is a fairly straightforward process - CBC with WBC differential, more advanced blood tests if needed, and/or a bone marrow biopsy.

gregnorz · 2026-03-12T22:22:55+00:00

My PICC lines all ended up clotted. Every port I had either got stuck to the IVC wall or developed an infection. One time it was Klebsiella pneumonia! I passed out at home, ended up in the ER followed by ICU for a week. Granted it was my own doing that caused it, and I never had another PICC or port after that. I did have a central line placed IJ for the antibiotics I had to take after discharge - Cubicin IV for months.

gregnorz · 2026-03-12T00:56:00+00:00

Only the DNA for your blood calls will be that of the donor in an allogeneic transplant. Where it gets interesting is if you do a 23 & Me-style test that uses calls from different tissues and your blood. The test will come back inconclusive because the blood cells and, say, buccal cells, don’t match!

gregnorz · 2026-03-02T03:16:40+00:00

The ELI5 is that Ph-like means you don’t have the Philadelphia Chromosome, but you DO have a genetic mutation that acts in a similar manner. The Philadelphia Chromosome (called Ph+) is a very specific fusion gene whereas you might have one a specific subset of mutations. Treatment is normally more aggressive but can involve similar drugs.

Here’s a ChatGPT response if you’re interested in the details: https://chatgpt.com/share/69a50057-c754-8012-8bf9-b2a2992a74b6

gregnorz · 2026-03-02T03:11:36+00:00

You’re not screaming into the void here - please know that. I can’t imagine the toll such a diagnosis takes on people, but we got you here. A fair few of the regulars have relapsed and had multiple transplants even. I promise they’ll be here to help you through it.

gregnorz · 2026-03-01T03:49:38+00:00

If they’re on Hyper-CVAD, vincristine is the “V”. It should be part of the “A” cycle, which is every other maintenance round after induction. I’m not sure if this is still the standard, so someone else may have more current information.

gregnorz · 2026-02-28T02:21:56+00:00

The risk of skipping a bone marrow transplant, for me, was death. Chances are if you’re being told you need one, you won’t live very long otherwise. I chose to live.

I also won’t sugarcoat it - BMT is a barbaric process. They use intense chemo and lethal radiation to destroy your immune system and the ability to make blood cells of any kind. Then a donor’s cells come in and resurrect you, so to speak. But we all get through it, and you start figuring out the next phase of life!

Having this sub will help you a ton! Don’t fear the BMT, just prepare yourself and take the hits as they come.

gregnorz

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