Jakifi box test shows MF Blood % is 0!

Posted by mickie6 @mickie6, 20 hours ago

Has anyone had any experience with the Jakifi box test?
My HO was excited to use it to see if Jakafi was working in my
case. It was offered at no charge and included four weekly and two bimonthly blood draws for HGB, WBCs and Platelets.
Results: My MF blood % went from 27% to 0%!
Right after, I had a RBC blood transfusion and HGB went from 7.5 to 9.0 and WBCs and Platelets normalized.

With increasing Jakafi in October and December...now 15mg twice a day, my blood counts were dropping. My symptoms did improve in Jan-Feb.

I was unaware of what the box test measured so I was flabbergasted and unprepared with questions. Thankfully I see the Bone Marrow Transplant Dr on Monday to ask him.
We were planning on a BMT in December if things escalated as they have. Insurance denied on the first appeal last year.
A!though I was not denied due to age, I will be two years older at 74. Hopefully it is not really necessary now!

I was blindsided with the diagnosis last March. My PC sent me to HO with my blood tests in February. The BM biopsy diagnosed it as PMF Jak2. I started on Jakafi 5mg twice daily in April after seeing the BMT Dr.
My symptoms really enhanced in that short of time.
I was always very active but the heavy fatigue and other symptoms really took me down fast, and my lifestyle has stayed pitifully different.
In October and December I was worse. My HGB once in the low 11s-10s had dropped into the 8s and low 9s. Symptoms increased.
January was better but Feb brought my spleen and liver enlargement, abdominal pain and swelling with the leg pain, headaches, night sweats,etc
continuing too.

I have read nowhere that Jakafi helps toward remission. But I read that is probably where I am at! It helps more in constitutional symptoms and spleen enlargement. So I am blissfully baffled!

Another question for you all.
Have you sensed you MPN has followed stresses in your life?
Looking back at earlier CBCs, mine were going wacky when my husband's cancer metastasized to the brain, his death and my PC was talking meds for BP and poor sleep in my active life continuing with grief. Just wondering.....

I will be z74

any

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davi0937 | @davi0937 | 12 hours ago

@mickie6
That is great news! I also have PMF - and have not heard of the box test. If Jakafi can bring remission that is great news. I hope you continue to feel better!

Lori, Volunteer Mentor | @loribmt | 12 hours ago

Hi @mickie6. I’ve not heard of the Jakafi Box test. I’m aware that when patients are taking Jakafi for their MF (myelofibrosis) that they are monitored frequently with blood tests such as a CBC with differential and metabolic panels which help doctors track the progress of the treatment. So I’m not sure what the ‘box’ test is. Is it a sponsored series of tests from the manufacturer? That’s a new one for me.

But wow, I’m really thrilled for you with having such positive results with the Jakafi. Often with MF, the spleen can become enlarged. Jakafi has been very affective in reversing that side effect and helping people reach remission.

By the way, welcome to Connect. Thank you for sharing your experience! I hope you’ll stick around and pop into the conversations with fellow MF members.
I am sad to read about the passing of your husband and so very sorry for your loss. How long were you married to your sweetie?

mickie6 | @mickie6 | 11 hours ago

I cannot find anywhere that Jakafi has that ability. The friends I have shared it with say it is a miracle from all the prayers I have received.

I finally found the procedures to follow should this happen
Regular OH visits, lab tests and also advice on
what I can do.
Even BMT are suggested
if you can qualify.🤷 Time will tell, but it has really given me a much better outlook on my future. I was told a 3 year life expectancy at diagnosis. I was diagnosed at intermediate 3 which qualified me for Jakafi immediately.
.

I am reading in clinical trials that life has been extended 24 mos and many patients. Five year average to seven...which gives more chance of more advancement!
BMT Dr said it could extend my life by six years. Is that worth all the live threatening risks?? I won't have to decide that until I qualify.

mickie6 | @mickie6 | 10 hours ago

I cannot find anywhere that Jakafi has that ability. The friends I have shared it with say it is a miracle from all the prayers I have received.
I finally found the procedures to follow should this continue.
Regular OH visits, lab tests and also found advice on what I can do.
Even BMT is suggested
if you can qualify.🤷

Time will tell, but it has really given me a much better outlook on my future. I was told a 3 year life expectancy at diagnosis. I was diagnosed at intermediate 3 which qualified me for Jakafi immediately.
I am reading in clinical trials that lives have been extended 24 mos in many patients. Five year average to seven...which gives more chance of more medical advancement!
BMT Dr said it could extend my life by six years. Is that worth all the live threatening risks?? I won't have to decide that unless I qualify.

Thank you! I will become an active participant.... I know no one with a MPN or MF!
This is such a blessing even as just a listener!!!

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