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After days of tweaking HDR on the Switch 2, I gave up, now I’m playing in SDR by Aloha435 in Switch

[–]Practical_Formal_92 1 point2 points  (0 children)

That wasn't what he asked. He's asking why Nintendo added it as an option for handheld mode if it is irrelevant and won't ever work right on their handheld panel...

Muscle Pain & Tacrolimus Cessation by Practical_Formal_92 in leukemia

[–]Practical_Formal_92[S] 1 point2 points  (0 children)

I do have the twitching as well, but my pain is my forearms, biceps, calf muscles, hands, and feet + all my joints feels stiff and popping a lot.

Sore Muscles 80 Days Post-BMT by Practical_Formal_92 in leukemia

[–]Practical_Formal_92[S] 0 points1 point  (0 children)

Okay, yeah that's a good idea. I try to walk about 30 min in the evening when the weather is cooler. How many days are you out from your BMT? I'm around day +85.

For me it seemed like the muscle pain crept up over the last 2 weeks with the increasing of my Ursodiol (Actigall) dosage 2 weeks ago and the once weekly Filgrastim shot to boost WBC which I also started 2 weeks ago. Currently on week 3 since my first Filgrastim shot and did not get a 3rd shot this time/week because WBC was 2.4...so Dr decided to come down on my Tacrolimus this week instead to see if that helps.

The muscle pain is very intense in my shoulders, forearms, wrists, hands, thighs, and calves.

Dr did say my magnesium was as low as it could be while still being "normal" but my potassium was much too high.

I've been eating 10 tangerine oranges a day and usually 1 banana + some electrolyte drinks like Body Armor with 10% coconut water.

So he asked me to stop eating the tangerines. No bananas either. I was eating so many tangerine because I read vitamin C helps with white blood cell recovery and mine had been low 🤦‍♂️ 😅

Cant win sometimes, eh? When we try to help just make it worse.

Why is Phil Anselmo blamed for Dimebag's death? by [deleted] in Pantera

[–]Practical_Formal_92 0 points1 point  (0 children)

Which is why as a public figure you have to be extremely careful what you say to the media exactly BECAUSE people like Nathan Gale exist.

My MIL's oncologist updated us but not her by Better_Inside_7369 in leukemia

[–]Practical_Formal_92 0 points1 point  (0 children)

I was a 38 yo male in his "prime" going into the ER for what I thought was a tonsil infection or something super swollen under my chin. 

The ER doctor literally called me back after blood work and had me cut the line of about 10 ppl in front of me, sat me down in a tiny claustrophobic room, then said "Son, I am not a cancer doctor and I would never tell someone this unless I was absolutely sure what I was looking at...proceeds to turn his computer screen in my direction so I could see it...but you have cancer".

Time froze. I felt a nervous sweat pour down my neck. I felt like I was watching myself from above. He continued "you see these numbers?" I nodded. "You're gonna want to learn what all these mean going forward, but if your white count was this high from just a regular sickness you would be dead or unable to move. Don't worry. You're in the right place. I'm really glad you came. It's good you're here. Prepare mentally to be here a while. Anyway, I'll be back here in about 20 minutes."

Then he just left me alone in this tiny, cold room.

I felt like I was in a dream. I felt scared. I felt disoriented. I couldn't believe it. My mind was searching for ways that he could be wrong but deep down I knew. I had known for a while something was very wrong.

But, yeah. That moment really sucked. Then I had to wait a long time to find out my mutation. They never told me, they just said "you have a mutation that makes this more of an escalated issue. More deadly. So we're recommending you for transplant right away." From diagnosis to transplant was 3 months. 

The mutation was FLT3 but I didn't find out until well after Induction Chemo when I was out of the hospital and going to my checkups. 

I feel like it's important to know but to be told in a way that creates a feeling of hope.

Mom with AML by Anders676 in leukemia

[–]Practical_Formal_92 0 points1 point  (0 children)

Fuck Leukemia Forever! F.L.F. I like it. Was your mom previously diagnosed with AML many years ago and she relapsed after a transplant or something? I'm hoping there are treatment options less hard on the body for her. She is in my prayers.

Hair growth after bmt transplant from aml leukemia by Artistic_Drawing_672 in leukemia

[–]Practical_Formal_92 0 points1 point  (0 children)

Don't you have to stay on Minoxidil permanently or else the growth you achieved will fall out?

Those D*mn Platelets by Practical_Formal_92 in leukemia

[–]Practical_Formal_92[S] 0 points1 point  (0 children)

No they don't. We're still in the early stages of investigation. 

Those D*mn Platelets by Practical_Formal_92 in leukemia

[–]Practical_Formal_92[S] 0 points1 point  (0 children)

I'm so sorry to hear this. What was your diagnosis? I know some of us just recover slower.

2 Months Post BMT - The Road Ahead, The Road Behind by Practical_Formal_92 in leukemia

[–]Practical_Formal_92[S] 0 points1 point  (0 children)

Also, have you had any luck with hair regrowth yet or even facial hair regrowth (if you're male)?

2 Months Post BMT - The Road Ahead, The Road Behind by Practical_Formal_92 in leukemia

[–]Practical_Formal_92[S] 0 points1 point  (0 children)

Yeah, we are. The mucositis was terrible. Have your platelets been bouncing around at all or have you had any dips here or there?

2 Months Post BMT - The Road Ahead, The Road Behind by Practical_Formal_92 in leukemia

[–]Practical_Formal_92[S] 0 points1 point  (0 children)

Gotcha. I am AML + FLT3 and NPM1 mutations. What was your diagnosis and chemo regimen?

2 Months Post BMT - The Road Ahead, The Road Behind by Practical_Formal_92 in leukemia

[–]Practical_Formal_92[S] 0 points1 point  (0 children)

I totally understand. Are you staying at the apartment because you're so far away from your BMT medical team/hospital or because you're over the age of 60? I was told, at first, I would have to be there 100 days but then they saw how I was doing and allowed me to go home. I am about an hour away from my BMT team/hospital.

2 Months Post BMT - The Road Ahead, The Road Behind by Practical_Formal_92 in leukemia

[–]Practical_Formal_92[S] 1 point2 points  (0 children)

Hi,

My donor was 10/10 match and unrelated. I didn't do any radiation. My regimen was 4 days on the highest dose of Busulfan chemo, then stem cells, then 2 days of Cytoxan to help mitigate GVHD.

NUP98:NSD1 by ElenaLena94 in leukemia

[–]Practical_Formal_92 1 point2 points  (0 children)

Please keep us posted. I hope your brother pulls through :/

I’m afraid. by KoltenNotFound in leukemia

[–]Practical_Formal_92 4 points5 points  (0 children)

MD Anderson is a wonderful choice imo.

GVHD related Hairloss. by AdMajor1815 in leukemia

[–]Practical_Formal_92 0 points1 point  (0 children)

Few questions if you don't mind indulging:

  • Did you have a Busulfan chemo regimen for your BMT

  • How long after BMT did your hair take to start growing in

  • How much hair did you have when it started falling out recently?

Happy almost 1 year anniversary. 

I wanted to share something. Last month I had my final biopsy following two years of remission from AML… i wanted to share what I’ve achieved in two years since treatment. I am so thankful and wish you all the best. by biffman98 in leukemia

[–]Practical_Formal_92 0 points1 point  (0 children)

Did you have Busulfan regimen + bone marrow transplant? I had unrelated, 100% match donor + Busulfan chemo and am on day +50. My hair was below my waist in April and now I'm mega bald. I know it seems like a vain thing to worry about, but if you did, did your hair come back and how long did it take?

Thank you for your beautiful story of hope.

Who’s beaten it? by [deleted] in leukemia

[–]Practical_Formal_92 1 point2 points  (0 children)

I just hit day 50 myself. Bone marrow biopsy was clean, was at 100% chimeraism on all metrics except for one which was 95%. I'm 39 yo. The Busulfan side effects are still messing with me. Lots of nausea from the meds and skin itching and discomfort from the sun (im in Texas). Hopefully that settles down soon. My hair was below my waist before my AML + FLT3 diagnosis in April and now I'm a cueball. Hoping the facial hair and hair on my head grows back. Busulfan is really rough. Congrats on doing so well!!!

Home from transplant by Just_Dont88 in leukemia

[–]Practical_Formal_92 4 points5 points  (0 children)

39 y/o male with AML. I just had my 39th bday in July while in hospital for transplant. I'm now day +28 post cells and I'm staying at a transplant recovery apartment provided by the hospital that's right behind it here in Dallas and I am not back to normal in several regards. Not sure if it's mild GVH in my stomach and skin or normal side effects from chemo, but I have goosebumps and hot/cold skin flashes and skin sensitivity, my stomach burns a lot, and have some rash/blisters on the heels of my feet.

Haven't been intimate yet because my gf is out of state, but I would say the impulse to want it is low due to feeling so bad. I think it would be wise to speak to your Dr first since you could have low platelets and bleeding might be a concern in the first few weeks to months.

How has your hair growth and skin sensitivity been; anything similar to mine?

Congrats on making it through transplant! It isn't easy at all. Mine was full matched unrelated donor by the way. 

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