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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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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

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1 reply
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)
@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, ☺️

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1 reply
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)
@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
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)
@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!

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1 reply
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)
@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.

Jump to this post

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

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2 replies
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)
@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.

Jump to this post

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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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)
@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, ☺️

Jump to this post

Sorry I spelled hu incorrectly

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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)
@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!

Jump to this post

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 24, 2023
In reply to @1995victoria "I think your Hemo should check WHO and CDC. ET with Jak2 is considered a chronic..." + (show)
@1995victoria

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

Jump to this post

I totally agree and I listen to my blood doctor as she is the top hematologist here. Misinformation is scary and confusing

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1 reply
ttown | @ttown | Aug 24, 2023

I have been on hydroxyurea for 10 months now after getting a diagnosis of ET Jak2.....My mouth got sores on my tongue, down my throat, and on my lips initially. I was taking HU daily, and my oncologist/urologist, took me off for 5 days, then started me back at 3X a week for a 3 month period....then added a fourth pill that I take Saturday, Sunday, Tuesday, Thursday and after 3 months he increased my dosage to 5 one week and 4 the next. What I am saying is, that the gradual increase has worked to put my platelet count back in the normal range, and no more sores. We are going to hold at this level as long as my platelet count stays in the normal range.
Wanted to share my experience because it worked so well for me. Oh...and I had headaches initially as well, but not now with the gradual increase. Hoping this helps.
Wishing good things for everyone.
Ginger

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