Member Avatar for blud

Hi Everyone - Just wanted to post here that Dani is MIA for a little bit, she's keeping an eye on DaniWeb via her phone, but is away from her computer. I'm sure she'll be back at it soon!

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  • Latest Post Latest Post by SCBWV
AndreRet commented: I trust she will thoroughly enjoy her time off and come back super-charged! +0
Member Avatar for Dani

Hello everyone and sorry for being absent from DaniWeb for the past month and a half.

I have had just unbelievably debilitating exhaustion that has prevented me from getting out of bed most days.

10,000 tests later, it is seeming as if it’s very likely that I have leukemia. The hematologist/oncologist is putting it at about 90% probability right now. I’ll be doing a bone marrow biopsy in a couple of weeks to confirm the diagnosis.

To add to it, because that isn’t enough, my doctors feel as if my body is simultaneously fighting tuberculosis.

I’m not sure when I’ll be able to return to DaniWeb more than just browsing my phone from bed.

Member Avatar for pritaeas

That's tough. Use your energy for recovery, I wish you all the best.

Member Avatar for AndreRet

Wishing you only the best and a quick recovery, hoping that the diagnosis will play in your favor!

Member Avatar for Reverend Jim

I am so sorry to hear that. Concentrate on getting better and we'll keep an eye on things here.

Member Avatar for SCBWV

Oh no! I'm saddened to hear that. I wish you and your husband the best and you a speedy recovery.

Member Avatar for rproffitt

Wishing you the best.

Member Avatar for Dani

Hi everyone! Thank you so much for all your well wishes. Today is actually the first day in about 2 months that I've been able to make it to the computer! I'm feeling well today, and hope this trend continues. As far as my health is concerned, there's still no news to share, but please be sure to keep me in your prayers :)

commented: Whoop whoop, hope it only gets better from hereon! +0
Member Avatar for SCBWV

It's great to hear you're feeling well today. Keeping you in my thoughts and prayers that this is a permanent upward trend!

Member Avatar for Dani

The trend didn’t continue. Yesterday was a particularly hard day, as is today.

Member Avatar for Dani

Hi everyone! Just checking in. Nothing new on my end of things. I've mostly been taking it easy and going to doctor appointments most days. Still awaiting the bone marrow biopsy scheduled for July 28th and then we should have the results of that 1-2 weeks later. The goal is that it will give some answers and then they can FINALLY start treating me and I can start feeling better. Unfortunately, if it ends up being inconclusive, a lymph node biopsy is next, and then more and more steps and tests to work towards getting a concrete diagnosis.

commented: Hope you get answers. +0
commented: get well soon +0
Member Avatar for Dani

It's been two months so I figured I'd update this thread for the last time. TLDR: I'm not going to get better.

I was diagnosed with a form of leukemia that modern medicine currently has no effective treatments for keeping in remission, nor are there any known treatments that the leukemia doesn't learn how to adapt to by mutating even further, and therefore coming back with a vengeance. Bone marrow transplants don't work. Chemo doesn't work. There are targeted treatments (similar to chemo) that help for a few years, but then it always comes back worse.

Essentially it's known as a chronic leukemia, and of all the chronic leukemias, I have a particularly aggressive constellation of mutations and comorbidities. Since it always comes back even stronger, with the time in remission shorter and shorter each time, the recommended treatment is to watch and wait for a few years until it almost kills you, then slam it back with a hammer. Then wait again another few years until it almost kills you, and then slam it back with a different hammer. Until you run out of different hammers.

Ultimately, the number of faulty white blood cells grows exponentially to the point of where it crowds out all of the functioning cells in your bone marrow and blood, and either there's no room left for functioning red blood cells and you die of anemia, or there's no room left for functioning white blood cells and you die of a paper cut.

I’ve read lots of studies that all show that the longer you can stay treatment-naive, the FAR better the long term prognosis. It’s dangerous to get onto the merry go round sooner than you have to!

Sooooo I’m opting to stay in constant pain and extreme exhaustion for the time being, attempting to treat myself with OTC vitamins and supplements to slow down the progression.

Member Avatar for JamesCherrill

We may have had our disagreements in the past, but this is one thing I wouldn’t wish on my worst enemy. With all my heart I wish you the strength to endure what must be endured.
And, who knows, modern medicine is improving exponentially. There’s always hope.
James

Member Avatar for Reverend Jim

There are targeted treatments (similar to chemo) that help for a few years

This is devastating news. We can only hope that with the rapid progression of modern medicine, more effective treatments will be forthcoming while existing treatments keep the worst at bay. Look at how quickly effective covid-19 vaccines were developed with MRNA technology that was only recently developed. I know that this can only be minimally comforting at best. As always I will keep you in my thoughts and hope for the best.

Member Avatar for SCBWV

I am so saddened to hear this that I'm at a loss for words. You're in my thoughts and prayers.

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