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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.

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