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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.

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nypara66 | @nypara66 | Aug 24, 2023
In reply to @sregiani "Have you seen your dentist lately? Not to make you worry, but any patches or sores..." + (show)
Profile picture for sregiani @sregiani

Have you seen your dentist lately? Not to make you worry, but any patches or sores in your mouth that don't resolve themselves in a week or two should be investigated. It's pretty simple: your doc or hygienist will shine a special light on the area. Depending on how it reflects the light determines the next step. Yes, these can be serious and can be cancerous. You may need a biopsy or be sent to an oral surgeon for the biopsy. Physicians do not work in the mouth, but we in the dental profession spend almost all our time in your mouth. Best wishes!

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Hydroxyurea is know to cause gum sensitivity and mouth sores. Although I agree to go get it checked, I wouldn’t be concerned that it was cancerous. Good luck!

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claire39 | @claire39 | Aug 23, 2023
In reply to @loribmt "Thank you @claire39 and @gmacookie (Helen) for also sharing your experience with HU. It’s interesting that..." + (show)
Profile picture for Lori, Volunteer Mentor @loribmt

Thank you @claire39 and @gmacookie (Helen) for also sharing your experience with HU. It’s interesting that you both had your dosages reduced too. I hope this helps @blkalydy973 feel confident in approaching her doctor to modify her dosage as well,
It’s heartwarming to see how special this community is with the willingness of so many members to share their experiences, ☺️

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Sorry I spelled hu incorrectly

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claire39 | @claire39 | Aug 23, 2023
In reply to @sregiani "ET is not necessarily a cancer. My heme doc says there are 4 types and the..." + (show)
Profile picture for sregiani @sregiani

ET is not necessarily a cancer. My heme doc says there are 4 types and the JAK2 variety is not cancer. (Maybe it can develop into something else later?) Ask your doc and stay with whatever re-testing schedule they recommend.

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My blood doc. Says otherwise, that it is a cancer. I am discovering that Some doctors have different opinions. I wish someone would clarify this for all of us.
I asked my doctor, after the last comment regarding this and she said that opinion was wrong, which makes it quite confusing. Can someone shed some light on this

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1995victoria | @1995victoria | Aug 23, 2023
In reply to @sregiani "ET is not necessarily a cancer. My heme doc says there are 4 types and the..." + (show)
Profile picture for sregiani @sregiani

ET is not necessarily a cancer. My heme doc says there are 4 types and the JAK2 variety is not cancer. (Maybe it can develop into something else later?) Ask your doc and stay with whatever re-testing schedule they recommend.

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I think your Hemo should check WHO and CDC. ET with Jak2 is considered a chronic cancer.

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2 replies
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sregiani | @sregiani | Aug 23, 2023
In reply to @blkalydy973 "Hi, I am back on this site for more information. I initially got off it as..." + (show)
Profile picture for barblee973 @blkalydy973

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. 🙁

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Have you seen your dentist lately? Not to make you worry, but any patches or sores in your mouth that don't resolve themselves in a week or two should be investigated. It's pretty simple: your doc or hygienist will shine a special light on the area. Depending on how it reflects the light determines the next step. Yes, these can be serious and can be cancerous. You may need a biopsy or be sent to an oral surgeon for the biopsy. Physicians do not work in the mouth, but we in the dental profession spend almost all our time in your mouth. Best wishes!

REPLY
1 reply
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sregiani | @sregiani | Aug 23, 2023
In reply to @1995victoria "I'm curious, what was reason to have blood tested for Jak2, if platelets were within normal..." + (show)
Profile picture for 1995victoria @1995victoria

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?

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ET is not necessarily a cancer. My heme doc says there are 4 types and the JAK2 variety is not cancer. (Maybe it can develop into something else later?) Ask your doc and stay with whatever re-testing schedule they recommend.

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2 replies
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Mentor
Lori, Volunteer Mentor | @loribmt | Aug 23, 2023
In reply to @claire39 "Hi everyone….I have ET and have been on Hyderabad for five years. My side effects are..." + (show)
Profile picture for claire39 @claire39

Hi everyone….I have ET and have been on Hyderabad for five years. My side effects are similar to most with itchy scalp, mouth and gum sensitivity, major headaches and fatigue. I was taking one pill a day until my hemoglobin dropped very low and then the dosage was changed to five days a week.
I still have the same symptoms but not as severe. I have learned to listen to my body and just rest when I need it. God bless and good luck to all…..Claire

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Thank you @claire39 and @gmacookie (Helen) for also sharing your experience with HU. It’s interesting that you both had your dosages reduced too. I hope this helps @blkalydy973 feel confident in approaching her doctor to modify her dosage as well,
It’s heartwarming to see how special this community is with the willingness of so many members to share their experiences, ☺️

REPLY
1 reply
Profile picture for claire39
claire39 | @claire39 | Aug 23, 2023

Hi everyone….I have ET and have been on Hyderabad for five years. My side effects are similar to most with itchy scalp, mouth and gum sensitivity, major headaches and fatigue. I was taking one pill a day until my hemoglobin dropped very low and then the dosage was changed to five days a week.
I still have the same symptoms but not as severe. I have learned to listen to my body and just rest when I need it. God bless and good luck to all…..Claire

REPLY
1 reply
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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)
Profile picture for Lori, Volunteer Mentor @loribmt

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?

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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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Profile picture for Lori, Volunteer Mentor
Mentor
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)
Profile picture for nypara66 @nypara66

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!

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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.

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