1. < Blood Cancers & Disorders

JAK2 Mutation - Effects and Questions

Posted by ettap @ettap, Mar 29, 2018

Have JAK2 mutation verified twice; one year apart and from different labs. As I understand, it may cause polycythemia vera, essential thrombocytosis, or leukemia. My hematologist has not provided any real info on this mutation so I've been researching via internet. I knew leukemia is cancer but was disappointed to find out today that the other 2 are blood cancers as well. I have been seeing a hematologist every 3 mos. about this since my 2nd blood clotting event in 09/2016. To date, all my blood factors have been in the normal range. Here are some of my questions: 1. Is it typical to verify this mutation well before it triggers one of these diseases? 2. I know early detection of cancer can be a real plus, but is there any research or experience that supports proactive steps that can be taken to deter the onset of any of these possibilities? 3. With polycythemia vera and essential thrombocytosis, is blood letting the primary treatment? If so, can the blood be donated? 4. Since none of my blood factors have ever been out of the normal range to date, no specific result of the JAK2 mutation has raised its ugly head. Is this normal? I'm not typically a worrier. In fact, I do really well with things like this once I know what I am dealing with. Information becomes my sword which allows me to take worry and nip it in the bud.

Interested in more discussions like this? Go to the Blood Cancers & Disorders Support Group.

jewelfaux | @jewelfaux | Jul 28, 2023
In reply to @sand103 "Same here! I had a stroke 2018. Full dose aspirin only thing since. Still elevated platelets..." + (show)
@sand103

Same here! I had a stroke 2018. Full dose aspirin only thing since. Still elevated platelets so HU and 325 mg aspirin now

Jump to this post

I haven't had a stroke. I was diagnosed 8 months ago with ET and was put on 325mg aspirin daily. I also am on 1000mg HU daily. My platelets are just under 500.

REPLY
mags17 | @mags17 | Jul 27, 2023
In reply to @milkweed "I did not tolerate Hydroxy and eventually was put on Jakify, which works well. I had..." + (show)
@milkweed

I did not tolerate Hydroxy and eventually was put on Jakify, which works well. I had flu like symptoms, 102 fever, it was very unpleasant. As suggested a medicine eval might also help. In the meantime you could try topical Diclofinic along with arnica and oral CBD.

Jump to this post

I cannot tolerate Hydroxy either. It is wrecking my immune system, am turning up with sinus/chest infections, evern on a reduced dose of 500mg × 3 days a week from 7 days a week. Blood letting hasn't been done for months as my HCT is around 45. Hair loss another nuisance, falling out in strands.
I notice you have mentioned Arnica here, I couldn't use the one I purchased as discovered it interacts with warfarin which I have been on for past 2 years. Am a firm believer in natural products, but alas I am just unlucky to be on warfarin as well. We need to be careful when recommending other drugs or preparations to others, as depends on what other conditions people are being treated for. Good luck with your change over from Hydroxy!

REPLY
sand103 | @sand103 | Jul 26, 2023
In reply to @1995victoria "Did you have BMB? (sorry I couldn't find your orig post) Important to get diagnosis, I..." + (show)
@1995victoria

Did you have BMB? (sorry I couldn't find your orig post) Important to get diagnosis, I think although some have mentioned DNA analysis. I'm surprised full dose aspirin also. You are the first I've heard with full dose. Are you going to a MPN specialist, also very important.

Jump to this post

No.. I have had elevated platelets for 30 years. Just recently elevated to 900’s. HU has brought it down under 500

REPLY
1995victoria | @1995victoria | Jul 26, 2023
In reply to @sand103 "Same here! I had a stroke 2018. Full dose aspirin only thing since. Still elevated platelets..." + (show)
@sand103

Same here! I had a stroke 2018. Full dose aspirin only thing since. Still elevated platelets so HU and 325 mg aspirin now

Jump to this post

Did you have BMB? (sorry I couldn't find your orig post) Important to get diagnosis, I think although some have mentioned DNA analysis. I'm surprised full dose aspirin also. You are the first I've heard with full dose. Are you going to a MPN specialist, also very important.

REPLY
1 reply
milkweed | @milkweed | Jul 26, 2023
In reply to @loribmt "You’re still having these horrible headaches? Is this relatively new since you stopped taking the Diclofenac..." + (show)
@loribmt

You’re still having these horrible headaches? Is this relatively new since you stopped taking the Diclofenac or was it when you started the HU? You mentioned before that you do have occasional migraines but nothing steady like these recurring headaches.

With all these new extreme pains you’re having in your bones, along with the headaches, this just feels as though there’s more going on that should be investigated.

I’m looking at your list of meds and wondering when’s the last time you had a med re-evaluation. With so many strong, pain pills, one of which contains codeine, another medication for gout, an anti-anxiety med (which can really mess with your serotonin level). You’ve just added HU to the blend, which incidentally, can increase the uric acid level which causes gout.
Not sure if this is related in any way to the Hydroxyurea but I’m wondering if you’re having an interaction with any of these drugs. Were you pretty ok up until the time you started with the HU?
Several members in the forum who had negative side effects from taking HU checked with their provider for advice to stop taking it for a few days or a week to see if it made a difference. It did make a difference and then their dosages were lowered. It would really be in your best interest to let your doctor know the issues you’re having.
Have you talked with your provider about you headaches and body pains? When’s the last time you had bloodwork run?

Jump to this post

I did not tolerate Hydroxy and eventually was put on Jakify, which works well. I had flu like symptoms, 102 fever, it was very unpleasant. As suggested a medicine eval might also help. In the meantime you could try topical Diclofinic along with arnica and oral CBD.

REPLY
1 reply
jola13 | @jola13 | Jul 25, 2023
In reply to @loribmt "You’re still having these horrible headaches? Is this relatively new since you stopped taking the Diclofenac..." + (show)
@loribmt

You’re still having these horrible headaches? Is this relatively new since you stopped taking the Diclofenac or was it when you started the HU? You mentioned before that you do have occasional migraines but nothing steady like these recurring headaches.

With all these new extreme pains you’re having in your bones, along with the headaches, this just feels as though there’s more going on that should be investigated.

I’m looking at your list of meds and wondering when’s the last time you had a med re-evaluation. With so many strong, pain pills, one of which contains codeine, another medication for gout, an anti-anxiety med (which can really mess with your serotonin level). You’ve just added HU to the blend, which incidentally, can increase the uric acid level which causes gout.
Not sure if this is related in any way to the Hydroxyurea but I’m wondering if you’re having an interaction with any of these drugs. Were you pretty ok up until the time you started with the HU?
Several members in the forum who had negative side effects from taking HU checked with their provider for advice to stop taking it for a few days or a week to see if it made a difference. It did make a difference and then their dosages were lowered. It would really be in your best interest to let your doctor know the issues you’re having.
Have you talked with your provider about you headaches and body pains? When’s the last time you had bloodwork run?

Jump to this post

Hi Lori Due to have blood’s tomorrow will ask. It’s only when I was told to cut out pain killers and started HU will talk to them.

REPLY
sand103 | @sand103 | Jul 25, 2023

I was told with Jak 2 mutation … blood donation is a NO

REPLY
sand103 | @sand103 | Jul 25, 2023
In reply to @1995victoria "The WHO has designated ET with Jak2 is a chronic cancer. And HU is considered chemo,..." + (show)
@1995victoria

The WHO has designated ET with Jak2 is a chronic cancer. And HU is considered chemo, I notice my platelets rising over 3 years of wellness exams, and asked my primary, he sent me to hematologist, had many blood tests plus bone marrow biopsy to confirm diagnosis. Had second opinion with all lab results, including slides from BMB and concurred with diagnosis. I've been on HU for 3 years now with baby aspirin, rather take meds than have stroke or heart attack.

Jump to this post

Same here! I had a stroke 2018. Full dose aspirin only thing since. Still elevated platelets so HU and 325 mg aspirin now

REPLY
2 replies
Mentor
Lori, Volunteer Mentor | @loribmt | Jul 25, 2023
In reply to @jola13 "ET - prefibrotic myelofibrosis JAK2 - Chronic Myeloproliferative disease on 26th day HU 500mg per day..." + (show)
@jola13

ET - prefibrotic myelofibrosis JAK2 - Chronic Myeloproliferative disease on 26th day HU 500mg per day and 75mg Aspirin plus my usual meds.aluprinol, sertraline, Lyrica, etc
- Ive been having a week of bad Headaches - extreme tiredness - and the last couple of days extreme pain in my shoulders, hips and feet - not just joint pain but deep bone pain.
- Have been told to stop Diclofenac for pain on my last bloods visit - can only take Cocodamol I have all strengths - lowest doesn't work - and if I try the higher doses I am like a zombie. I have moments where in an instant I have to stop what Im doing and crawl into bed.

Jump to this post

You’re still having these horrible headaches? Is this relatively new since you stopped taking the Diclofenac or was it when you started the HU? You mentioned before that you do have occasional migraines but nothing steady like these recurring headaches.

With all these new extreme pains you’re having in your bones, along with the headaches, this just feels as though there’s more going on that should be investigated.

I’m looking at your list of meds and wondering when’s the last time you had a med re-evaluation. With so many strong, pain pills, one of which contains codeine, another medication for gout, an anti-anxiety med (which can really mess with your serotonin level). You’ve just added HU to the blend, which incidentally, can increase the uric acid level which causes gout.
Not sure if this is related in any way to the Hydroxyurea but I’m wondering if you’re having an interaction with any of these drugs. Were you pretty ok up until the time you started with the HU?
Several members in the forum who had negative side effects from taking HU checked with their provider for advice to stop taking it for a few days or a week to see if it made a difference. It did make a difference and then their dosages were lowered. It would really be in your best interest to let your doctor know the issues you’re having.
Have you talked with your provider about you headaches and body pains? When’s the last time you had bloodwork run?

REPLY
2 replies
jola13 | @jola13 | Jul 25, 2023

ET - prefibrotic myelofibrosis JAK2 - Chronic Myeloproliferative disease on 26th day HU 500mg per day and 75mg Aspirin plus my usual meds.aluprinol, sertraline, Lyrica, etc
- Ive been having a week of bad Headaches - extreme tiredness - and the last couple of days extreme pain in my shoulders, hips and feet - not just joint pain but deep bone pain.
- Have been told to stop Diclofenac for pain on my last bloods visit - can only take Cocodamol I have all strengths - lowest doesn't work - and if I try the higher doses I am like a zombie. I have moments where in an instant I have to stop what Im doing and crawl into bed.

REPLY
1 reply
View MoreView Less
Please sign in or register to post a reply.