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.

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)

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

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)

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!

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)

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.

1995victoria | @1995victoria | Jul 30, 2023

I'm curious, what was reason to have blood tested for Jak2, if platelets were within normal range? And yes, ET is a chronic blood cancer. Wondering if you are on any medication for Jak2?

barblee973 | @blkalydy973 | Aug 21, 2023

Hi, I am back on this site for more information. I initially got off it as I wasn't sure how secure the site is. Anyway I have been on Hydroxyurea 1000mg a day for about a year. I have gone through a number of side effects but the most irksome now is the skin blisters. Itchy, sometimes painful, depending on the location. I can have a single one or a cluster of them. Currently using an Rx Hydrocortisone Ointment 2.5% twice daily. Helps a little. However, I think I have one in my throat. I have had them on my tongue and obviously can't treat them with hydrocortisone. The one in the throat causes a tickle which makes me cough and if food hits it, I sneeze. Cough drops help a bit and I usually wake up 2 times a night and have to use a cough drop. I'm checking to see if anyone else has experienced this. I'm 74 years old and am told the Rx will be a lifetime one. 🙁

remo1110 | @remo1110 | Aug 21, 2023

I have Essential thrombocytosis with JAK2 mutation. I take a drug called hydrea and it has lowered by platlets from 750.000 down to 380,000 if i understand it correctly it lowers the chances of having a blood clot.
Hydrea is a chemo drug.

hope I helped .

Lori, Volunteer Mentor | @loribmt | Aug 22, 2023

In reply to @blkalydy973 "Hi, I am back on this site for more information. I initially got off it as..." + (show)

Hi @blkalydy973 Welcome back to Connect. We have a number of members in the forum who are taking Hydroxyurea (HU) for their PV or ET. Some have side effects and have found a benefit from asking for a reduction in the dosage. After talking with their doctors they’ve been able to drop to 500mg daily or sometimes 1000mg every other day, etc. So it may be helpful to see if that is an option for you.
As we get older our bodies no longer metabolize medications like we did when we were younger. Drugs can linger in our body longer and have the potential to cause side effects.

Hydroxyurea is one of many drugs which can cause photosensitivity reactions. The skin can become easily irritated, inflamed, and more prone to burning.

I found some ongoing discussions for you with other members taking HU:

How do You Manage Side Effects Of Hydrea or Hydroxyurea for ET? With members @dancouclanel4 @koryw208 @gmacookie @lefsequeen and others…
https://connect.mayoclinic.org/discussion/side-effects-of-hydroxyurea-et/
~~~~
This discussion with @dale1k @nypara66
@1995victoria @robert3861
Hydroxyurea side effects lessen over time?
https://connect.mayoclinic.org/discussion/hydroxyurea-side-effects-lessen-over-time/
Have you spoken with your doctor about possibly reducing your dosage to see if that makes a difference in your skin symptoms?

nypara66 | @nypara66 | Aug 22, 2023

In reply to @loribmt "Hi @blkalydy973 Welcome back to Connect. We have a number of members in the forum who..." + (show)

Correction: I have PV NOT ET, but I am taking the hydroxyurea. The dosage was adjusted to just 3X a week now and for 12 weeks my platelets are stable. I’ve gotten phlebotomies every 8 weeks for the last three times. I’m hoping I can stay at this dosage. My skin spots have slowed down and gum sensitivity also. Good luck!

Lori, Volunteer Mentor | @loribmt | Aug 22, 2023

In reply to @nypara66 "Correction: I have PV NOT ET, but I am taking the hydroxyurea. The dosage was adjusted..." + (show)

Hi @nypara66 Thank you for replying about your experience with hydroxyurea for @blkalydy973. Your skin condition sounds similar to what they are experiencing. It’s really valuable for others to see that dosage adjustments can be helpful in alleviating side effects.

gmacookie | @gmacookie | Aug 22, 2023

In reply to @loribmt "Hi @blkalydy973 Welcome back to Connect. We have a number of members in the forum who..." + (show)

Hi, I have been on hydroxyurea since 2014. I cant say I have had any side effects from it. They increased my dosage earlier this year. I now take 500mg every day and 1000 on Mondays and Thursdays. My platelets had started going back up...
Still no side effects. They first put me on Anagrelide that didn't work at all. I got a terrible headache from it.
Thank you for bringing me back into the conversation

Helen

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