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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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cindy7 | @cindy7 | Jun 16, 2024
In reply to @jackiecarey "I myself noticed that my red red and white cells were increasing over time..When I brought..." + (show)
@jackiecarey

I myself noticed that my red red and white cells were increasing over time..When I brought it to the attention of my family doctor several times I was told several times it's dehydration. this continued until one day my lab work went over normal (I'm from the medical profession ) knew it wasn't dehydration and made an appointment with a hematologist. He knew immediately it was PV without the Jak2 although he did do the blood test and it was positive. I was told it's a rare orphan blood cancer and few doctors have had any experience with it. I was also told don't ask certain questions. I decided this hematologist isn't a good fit so then I went to MDAnderson where in the past I went for breast cancer. The hemotologist asked to do the jak2 and lab work again ,of course I said yes followed by a bone marrow..I'm on hydrox my doctor has made me a partner in my care which had made a huge difference for me..I have fatigue like many of you speak about and someone on this site said" it's our new normal.'"Which is so true and helped me accept my diagnosis..I only wonder if more people would be diagnosed before a clot hits the heart, brain or lung with the autopsy missing the root cause if more doctors were aware of these rare blood cancers. It's no joke and does affect our quality of life.. Delaying or missing the diagnosis is a huge misstep..

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My experience was a bit similar. The primary care provider poo-pooed my symptoms to fibromyalgia or depression. He offered me a prescription for antidepressants. I got up, walked out the door, and found a new doctor. He was probably doing the best he could with the knowledge he possessed, but I knew my body was screaming for help. Let’s take a minute out of our day to spread the word with thoughtful conversations.

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jackiecarey | @jackiecarey | Jun 17, 2024

Ive been diagnosed with PV one of the MPN'S and I could tell something was wrong because my cell numbers were increasing over time and was told dehydration several times..Finally the numbers went over normal so I made an appointment with a hematologist..He knew without the Jak2 it was PV but did the Jak2 which was positive. My problem with this hematologist is when I asked questions if he didn't like it he'd say "don't ask questions like that" well that was the last visit with this guy. I'm with another Hematologist at another facility who wanted their own Jak2, bone marrow and lab work and who has made me a partner in my care. I wouldn't think twice about changing hematologist's if your not getting answers..Your symptoms sound troubling to me. I'm 76 you're a young mother, please consider getting into the weeds and find out what's going on....I'm from the medical profession and know how to navigate the system, they don't intimidate me....Don't except what you know is not right. Your inate self is almost always right. Good luck.....

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ontheverge | @ontheverge | Jun 19, 2024
In reply to @markdi "I have been struggling with ET for 18 years now and have found heavy , really..." + (show)
@markdi

I have been struggling with ET for 18 years now and have found heavy , really heavy exercise helps a lot. I don’t know if it’s the endorphins or maybe my blood getting heavily circulated but it really helps but you have to be willing to go do a 50 mile bike ride when you feel like cr$p. I recently went from Hydrox to Pegasus and my platelets have gone from 700,000 to 450,000 but I feel worse than ever. Not sure why? I also have some very large bruise marks about the size of an orange where I inject myself in the side of the stomach that will not go away. The most concerning is my vision seems to be getting more blurry. It’s so hard to tell what is just from age as I am 68 and what might be from the drugs and disease.

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I too have found that heavy exercise really helps. I returned two weeks ago from an 9-day wilderness backpacking trip with four long days (10-, 11-, 12-, and 13-miles) of hiking between camps, and feel completely restored. I'm sleeping better and can work through the afternoon fatigue with an occasional short nap and by going out and tackling gardening chores in our southern heat and humidity. I've been on hydroxyurea intermittently for 18 months, finally getting platelets down to 469,000 taking 500mg daily.

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hudson2019 | @hudson2019 | 1 day ago
In reply to @jak2mpnpositive "Wow! I’m so happy he’s doing well. My connection is known via blood tests. I was..." + (show)
@jak2mpnpositive

Wow! I’m so happy he’s doing well.

My connection is known via blood tests. I was very healthy, had the tick bite and 3 months later all of my blood tests changed. My platelets soured very high. My blood work prior to the tick bite was completely normal and more importantly, I felt healthy. Thank you for sharing your story.
Kara

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Hi I was Diagnosed with ET in Jan 24im on Hu 1000mg day I also was Diagnosed with Lyme Disease in May 23platelets over million than platelets now 665been treated For Lyme Disease oral Antibiotics for two months Lyme still there Dr Suggests intervenous Antibiotics with Hyperbaric Chamber 6wks. I have no Symptoms of either Disease but trying too get platelets Down and the Lyme Disease too.

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1 reply
Mentor
Lori, Volunteer Mentor | @loribmt | 1 day ago
In reply to @hudson2019 "Hi I was Diagnosed with ET in Jan 24im on Hu 1000mg day I also was..." + (show)
@hudson2019

Hi I was Diagnosed with ET in Jan 24im on Hu 1000mg day I also was Diagnosed with Lyme Disease in May 23platelets over million than platelets now 665been treated For Lyme Disease oral Antibiotics for two months Lyme still there Dr Suggests intervenous Antibiotics with Hyperbaric Chamber 6wks. I have no Symptoms of either Disease but trying too get platelets Down and the Lyme Disease too.

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Welcome, @hudson2019. You’re certainly having your share of medical drama the past couple of years. Lyme disease can cause huge variety of issues in the body so I’m happy to see that your doctor is taking this seriously. Lyme disease is finally getting recognition and treatments are more forthcoming.
It appears the HU is helping reduce your platelet level as anticipated. I hope you continue to improve and that the Lyme Disease treatments are successful for you. Did your doctor feel there was any correlation between the elevated platelets and Lyme or is the ET due to a genetic mutation such as the JAK2 gene?

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1 reply
hudson2019 | @hudson2019 | 8 hours ago
In reply to @loribmt "Welcome, @hudson2019. You’re certainly having your share of medical drama the past couple of years. Lyme..." + (show)
@loribmt

Welcome, @hudson2019. You’re certainly having your share of medical drama the past couple of years. Lyme disease can cause huge variety of issues in the body so I’m happy to see that your doctor is taking this seriously. Lyme disease is finally getting recognition and treatments are more forthcoming.
It appears the HU is helping reduce your platelet level as anticipated. I hope you continue to improve and that the Lyme Disease treatments are successful for you. Did your doctor feel there was any correlation between the elevated platelets and Lyme or is the ET due to a genetic mutation such as the JAK2 gene?

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Good morning I have the CALR mutation. I think I'm going too try the IV Antibiotics with the Hyperbaric chamber any thoughts on the Hyperbaric chamber. I also think Stress plays into this, yes my Integrative medicine Dr thinks that might of flipped the Switch for me the Lyme Disease Cancer Dr says nothing, my wife passed away from Acute Myeloid Leukemia with a FLT3 gene in 2020, so I question a lot of things.

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1 reply
Mentor
Lori, Volunteer Mentor | @loribmt | 6 hours ago
In reply to @hudson2019 "Good morning I have the CALR mutation. I think I'm going too try the IV Antibiotics..." + (show)
@hudson2019

Good morning I have the CALR mutation. I think I'm going too try the IV Antibiotics with the Hyperbaric chamber any thoughts on the Hyperbaric chamber. I also think Stress plays into this, yes my Integrative medicine Dr thinks that might of flipped the Switch for me the Lyme Disease Cancer Dr says nothing, my wife passed away from Acute Myeloid Leukemia with a FLT3 gene in 2020, so I question a lot of things.

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Hi @hudson2019 The use of hyperberic chamber treatments for Lyme’s diseases is gaining recognition. I live in an area of high instances of the scourage and have heard positive comments from the treatment. Instead of typing out what I know, I found a good article for you with all the information.
https://www.nationalhyperbaric.com/hbot-treatments-and-conditions/lyme-disease
I’m just happy you found a doctor who takes Lyme’s disease seriously. If you try the therapy, please report back on your progress!

I’m so sorry to hear that your wife passed from AML with FLT3 mutation. I had the same leukemia in 2019 and it was an incredibly challenging ordeal, including a bone marrow transplant. Despite efforts by both patient and supporting oncologists, AML-FLT3 can be a difficult disease to treat. I’m very sorry for your loss.
So you’ve been having to face your new health issues flying solo. Do you have a support system nearby with family and friends?

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