1. < Blood Cancers & Disorders

I have JAK2 ET and MPN: Anyone else have these symptoms?

Posted by jak2mpnpositive @jak2mpnpositive, Mar 1, 2022

Hi all,
I've suffered for many years with this MPN disorder, but it seems not many others have the same symptoms, so I'l posting this to see if anyone else has similar symptoms.
First of all, it's important to note that I had lyme disease undiagnosed for 4 years. Right around the time I started to experience symptoms from Lyme disease, my platelets shot up. With that said, I am certain that this is when the JAK2 was triggered. However, it took my another 9 years to be diagnosed with JAK2, ET MPN. My platelets are currently around 890. I am 40 years old. With a recent pregnancy, my platelets went down into normal range and I felt AMAZING!
Symptoms that I experience: Very red (almost purple) feet when sitting too long. This is not comfortable.
Upon sitting too long at a desk, typically in front of a computer, if it's consistent for several weeks, I start to feel as though I am going to die. There is no other way to explain it. It's as if my blood is stagnet. It's VERY uncomfortable. The only way for me to feel better is with exercise and continued movement.
I've had a hematologist tell me my symptoms aren't related to my MPN and I've had one tell me they are. It's very frustrating.
Does anyone else have any similar symptoms?
Thank you.

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ger63 | @ger63 | May 6, 2023
In reply to @sregiani "Welcome to the club! I, too, am cold intolerant and have Reynaulds (which mayor may not..." + (show)
@sregiani

Welcome to the club! I, too, am cold intolerant and have Reynaulds (which mayor may not be related to ET w/JAK2). Do your fingers or toes turn white before darkening when the blood flow returns? That’s classic Reynauds. In any case, you should contact your Doc.

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Thank you for this. I need to examine if my fingers turn white. I would venture to say they are a deep red color in the cold. I am just so intolerant. Painfully intolerant. I also would say my skin looks different. I don't know if it is from the medication as I said in my comment. The left side of my face (cheek) also gets redder than the right side. Go figure. I do have a follow up with my Hem/Onc doctor in the next few weeks. Thank you again for your response. All of this is a journey. I am glad I have the forum as I said previously.

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mjpm2406 | @mjpm2406 | May 7, 2023
In reply to @ger63 "Hi, I was do with ET 3 years ago, + JAK2 via BM bx. I am..." + (show)
@ger63

Hi, I was do with ET 3 years ago, + JAK2 via BM bx. I am cold intolerant and my knuckles turn purple in the cold. I am on Hydrea 500mg M-F with a low dose Asa. My lower legs have reddened and I am not sure if it’s med related or the disease process. Also my elbows get very red. Platelets are in check. No Lyme disease. I am glad to find this forum.

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I have MDS/MPN-RS-T which is an extremely rare overlap disease. I have multiple gene mutations on both the MDS side and the MPN side. The RS-T component is Myelofibrosis. I take one Hydrea 500mg tablet 5 days per week and two Hydrea 500mg tablets on Tuesdays and Fridays. I also take a daily low dose Aspirin every day. I get blood labs every month. I get the burning in my feet and calves but not sure if it’s related to the MDS or MPN disease. I underwent a whole Exome Sequencing test which indicates I have Sensorimotor Axonal Polyneuropathy, CMT2 and CMT4B which are PN diseases. It’s complicated but so far it’s bearable. Hopefully, the blood cancer won’t mutate to full blown CML requiring a stem cell transplant.

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2 replies
sandy1959 | @sandy1959 | May 8, 2023

Good Morning. I have the Jak2 mutation and diagnosed with ET. I have been on Hydroxyuria for 2 1/2 years and a baby aspirin. I take my meds before bed. I feel a burning in my abdomen which wakes me up to urinate. I have a hard time going back to sleep because I feel hot, like I am cooking on the inside. Does anyone experience these symptoms? Best Regards

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2 replies
pamdg | @pamdg | May 8, 2023
In reply to @mjpm2406 "I have MDS/MPN-RS-T which is an extremely rare overlap disease. I have multiple gene mutations on..." + (show)
@mjpm2406

I have MDS/MPN-RS-T which is an extremely rare overlap disease. I have multiple gene mutations on both the MDS side and the MPN side. The RS-T component is Myelofibrosis. I take one Hydrea 500mg tablet 5 days per week and two Hydrea 500mg tablets on Tuesdays and Fridays. I also take a daily low dose Aspirin every day. I get blood labs every month. I get the burning in my feet and calves but not sure if it’s related to the MDS or MPN disease. I underwent a whole Exome Sequencing test which indicates I have Sensorimotor Axonal Polyneuropathy, CMT2 and CMT4B which are PN diseases. It’s complicated but so far it’s bearable. Hopefully, the blood cancer won’t mutate to full blown CML requiring a stem cell transplant.

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I have PV and have burning in my feet and calves. I’m taking Jakafi and low dose Aspirin.

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dipsbhalothia | @dipsbhalothia | Nov 19, 2023

Good to know that u are doing good mam. I'm 32 and recently diagnosed with ET jak2 positive. My platelets are around 900 to 1000. Please share your experience at the time of diagnosis.

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sregiani | @sregiani | Nov 19, 2023
In reply to @sandy1959 "Good Morning. I have the Jak2 mutation and diagnosed with ET. I have been on Hydroxyuria..." + (show)
@sandy1959

Good Morning. I have the Jak2 mutation and diagnosed with ET. I have been on Hydroxyuria for 2 1/2 years and a baby aspirin. I take my meds before bed. I feel a burning in my abdomen which wakes me up to urinate. I have a hard time going back to sleep because I feel hot, like I am cooking on the inside. Does anyone experience these symptoms? Best Regards

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Suggest you tell your Heme doc and your pharmacist. The latter may have helpful info to share w/your doc.

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mdterp76 | @mdterp76 | Nov 21, 2023
In reply to @sandy1959 "Good Morning. I have the Jak2 mutation and diagnosed with ET. I have been on Hydroxyuria..." + (show)
@sandy1959

Good Morning. I have the Jak2 mutation and diagnosed with ET. I have been on Hydroxyuria for 2 1/2 years and a baby aspirin. I take my meds before bed. I feel a burning in my abdomen which wakes me up to urinate. I have a hard time going back to sleep because I feel hot, like I am cooking on the inside. Does anyone experience these symptoms? Best Regards

Jump to this post

Sorry you having these symptoms. Definitely consult with your hematologist/oncologist about this. If you are just being seen by your general doctor, you need to have a specialist follow your case. I take the HU 4 hours before I go to bed with 16 oz of water and keep water next to my bed. I drink a lot of water throughout the day on HU and non-HU days. I take it 2x week. I also take 1 baby aspirin and iron daily. I drink OJ with iron and eat blueberries, strawberries, and orange Halos daily. Perhaps, they might consider cutting back on your HU and building up? My doctor initially wanted me to start at 3x a week. I opted for 1x week for a month, then the second month I went to 2x week. I've been at twice a week for 10 months and my numbers are stable. There are also other options for treatment that may be a better match for you. Sending positive thoughts your way!
Karla

REPLY
1 reply
mjpm2406 | @mjpm2406 | Nov 22, 2023
In reply to @mjpm2406 "I have MDS/MPN-RS-T which is an extremely rare overlap disease. I have multiple gene mutations on..." + (show)
@mjpm2406

I have MDS/MPN-RS-T which is an extremely rare overlap disease. I have multiple gene mutations on both the MDS side and the MPN side. The RS-T component is Myelofibrosis. I take one Hydrea 500mg tablet 5 days per week and two Hydrea 500mg tablets on Tuesdays and Fridays. I also take a daily low dose Aspirin every day. I get blood labs every month. I get the burning in my feet and calves but not sure if it’s related to the MDS or MPN disease. I underwent a whole Exome Sequencing test which indicates I have Sensorimotor Axonal Polyneuropathy, CMT2 and CMT4B which are PN diseases. It’s complicated but so far it’s bearable. Hopefully, the blood cancer won’t mutate to full blown CML requiring a stem cell transplant.

Jump to this post

Going for another bone marrow aspiration and molecular panel on November 29th at Sloan. Plus something called a Koch procedure. Anyone know what that is? Apparently, my red blood cells are too large and I have a high number of immature white blood cells.

REPLY
sandy1959 | @sandy1959 | Nov 28, 2023
In reply to @mdterp76 "Sorry you having these symptoms. Definitely consult with your hematologist/oncologist about this. If you are just..." + (show)
@mdterp76

Sorry you having these symptoms. Definitely consult with your hematologist/oncologist about this. If you are just being seen by your general doctor, you need to have a specialist follow your case. I take the HU 4 hours before I go to bed with 16 oz of water and keep water next to my bed. I drink a lot of water throughout the day on HU and non-HU days. I take it 2x week. I also take 1 baby aspirin and iron daily. I drink OJ with iron and eat blueberries, strawberries, and orange Halos daily. Perhaps, they might consider cutting back on your HU and building up? My doctor initially wanted me to start at 3x a week. I opted for 1x week for a month, then the second month I went to 2x week. I've been at twice a week for 10 months and my numbers are stable. There are also other options for treatment that may be a better match for you. Sending positive thoughts your way!
Karla

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Thank you for your post, tips and positive thoughts. I am going to incorporate some of your practices. I see my specialist next week, and I plan to discuss concerns. All the best in your journey as well!!!

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