JAK2 Mutation - Effects and Questions

Hi @marnix, those mouth sores can be real annoyances to down right miserable. Are you able to manage them alright?

I have been on low dose Hydroxy for 2 months now - do notice small mouth sores. Otherwise, just fatigue that is mostly manageable. I have JAK2 mutation with Polycythemia Vera... also have had Chronic Lymphocytic Leukaemia for about 15 years ( with little treatment) and was put on Xarelto and ASA low dose for peripheral artery disease. I am 80 years old, and try to keep active with yoga and core classes as well as a good walk once a day. One Phlobotomy, and platelet count has gone down to 400 range from over 600.

Hi @ger63. With the peeling of your lower lip and pinpoint areas on your tongue, do you by any chance use a whitening toothpaste? This may cause similar reactions if you have a sensitivity to some of the ingredients, causing sloughing of the tissue and irritation to the tongue. Try using a children’s non-mint toothpaste for a couple of weeks to see if it makes a difference.

Another option is to make a paste out baking soda and water. It’s not very tasty but it does a good job cleaning your teeth and it’s not irritating.

Finishing up after each meal with a saltwater rinse may help sooth your tongue and mucous. Dissolve 1/4 tsp salt in a cup of lukewarm water. Rinse for 30 seconds and spit. Repeat a couple of times.

Do any certain foods seem to bring this on, such as tomatoes or anything salty/spicy or acidic?

I do get peeling on the inner aspect of my lower lip and small pinpoint areas on my tongue. This happens intermittently. The dentist isn’t sure the cause . My chemo doctor thinks it maybe an allergic reaction. My platelets are in normal range. For that I am happy.

I do get peeling on the inner aspect of my lower lip and small pinpoint areas on my tongue. This happens intermittently. The dentist isn’t sure the cause . My chemo doctor thinks it maybe an allergic reaction. My platelets are in normal range. For that I am happy.

Thank you so much for all your encouragement, you are super positive & determined to keep going, which is half the battle. I believe that some medical staff have a tendency to 'write off' older folk! I am 76 & was diagnosed 2 years ago with Polycythaemia Vera Jak2 mutation. I always thought it came under blood cancer category. What a relief when I read your explanation of the condition. Am on Hydroxy 3 days a week. Havn't had phlebotomy since January this year as Hct was 45 or under.
I had started off with Hydroxy on alternative days, combined with phlebotomy. The higher doses of Hydroxy initially were leaving me exhausted with little energy. I informed my Haematologist of this, he gave me 3 options,
1 to change to another med.
2 to reduce Hydroxy to 3 days a week
3 To have regular venesections only without any med.
I opted for Hydroxy, and have wondered since, if I had opted for venesection only, how would my platelet count be? 6 weeks ago platelets were 434 (Normal range = 140-450). Have a consultation on Monday 20th Nov. so hopefully platelets won't have increased since?
In addition, I am on daily warfarin since the year before my PV diagnosis, due to a clot in my leg. Was on warfarin for 6 months back then, taken off after 6 months, approx 3 months later I developed a clot in my lung which led to investigation for Polycythaemia, which was positive. I asked Haematologist assistant if it was necessary to be on warfarin & Hydroxy concurrently, he couldn't give me a definite answer! To be very frank, I find having to go to the warfarin clinic weekly more stressful than attending the Haematoligy clinic every 4 to 6 weeks.
Just wonder if anyone else on here is on a combination of warfarin & Hydroxy. I cannot be changed over to Apixiban from warfarin as am on another drug which interacts with Apixiban.
Well done on your determation to remain a carer for your son & manage your own health issue by just getting on with life.

@ettap you have a lot of reasonable questions. I'm not a doctor.
I just have Jak2 and polycythemia vera. My grandfather died of leukemia in 1976 before adequate "tools" were available to deal with his at the same stage that I am at age 73 so I have been watching my blood work for 20 years, just in case. because I have symptoms. My point is that I have a family history and we are waiting for my son's Jak2 results to come back - he is only age 50, but I suspect that he has it, too due to some of his blood work and symptoms.
@mag17 PCV is NOT cancer. It is a hematologic disorder that needs treatment before it progresses. Sign relief. Polycythmia Vera, if treated is not going to kill you. I'm not a hematologist. This can be, and is, listed under "cancer" for lack of better category, but it is not cancer. It is a myleoprolipherative disorder that makes you feel like crap - and non-hematologists doctors have a difficult time figuring out why - this is a complex disorder so have patience with your docs.
If your blood levels are fine- there is nothing to treat. ( High hematocrit and Hemoglobin) You can live a very long time, IF treated to avoid complications. Since "you" would be getting regular blood tests specific to polycythmia vera, or blood clots, anemia etc, catching a progressive disorder that ends up being cancerous can be caught very early. ( I'm not diagnosing anyone or treating anyone here.)
PCV can make one short of breath - that becomes confusing when one does not have asthma or COPD etc... ( A Physician Assistant or Nurse practitioner may not know what to do with you when your breathing tests look normal. You need a referral.)

"Blood Letting" or phlebotomy blood can NOT be donated due to polycythemia, unfortunately. "Dumping" some of your blood is an effective treatment to help reach the goals, set by your hematologist for you. My goal is to keep my hematocrit at or below 45.

@mag17 You have a concerning question.

Interestingly, one of my son's new and now ex-providers flipped out that I was not in hospice or palliative care and made a big emotional hub-bub for nothing.
Off-topic explanation: my son, age 50 has advanced primary progressive MS. Drs found blood clots in his lungs and some other 'weird' blood results. At 73, I am still his primary and only caregiver for the bedridden man. When this GI practitioner looked at the family history, she decided without discussion that I'm "too old and dying to care for my son - send him to a nursing home and get into hospice care!"

Even with polycythemia vera and hyperaldosteronism at age 73, I am still physically able to roll my 250 pounds 6' 2" quadriplegic son in his hospital bed and transfer him to a wheelchair all by myself (It takes 4 hospital staff to do it in the hospital.) The point is that I am NOT DYING of cancer. I do well as long as I have the right dose of medication. I am still living a productive life. YES, I was very ill until I got the right diagnosis and treatment.
I'm not going to let any one force me into throwing in the towel when I am still able to be productive. Besides, most of us do best when active and around loved ones.
I hope my words help answer some possible questions.

I have ET Jak2 and I understand that we all react differently to medications....I have seen it mentioned that hydroxyurea has caused other people to develop sores in their mouth among other "problems". They are always small and only last a couple of days, and I am guessing it is from the pill touching my tongue. I have seen several mentions about handling this pill and washing your hands immediately after. For me, the sores in my mouth from taking this medication 4 times a week, is minimal and this is my only problem.....my platelet count has been within the normal range for the past six months, and for that I am grateful and willing to put up with these small areas on my tongue. Does anyone else have this side effect as an ongoing situation?

I was diagnosed with ET with Jak2 by accident 2005. My 1st. Hematologist started me on 500mg. Hydoxyurea 3x daily I was weak nausea and chills just laying around unable Togo to work. I saw the Dr. And told her how I couldn’t tolerate med. she stated have to take this dosage and adjust. Well I never returned to her and found a new hematologist who immediately placed me on 500mg. 1x daily. It worked fine and I have taken it since 2005 and it lowered the platelets enough without an increase in dosage. For some reason since I retired from the dental field in 2020 due to back problems, my platelets dropped enough to discontinue the hydroxyurea. To not take it with high counts can risk stroke heart attack due to possible blood clots.