JAK2 Mutation - Effects and Questions

@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.

ET stands for Essential Thrombocytosis. , I have this also and with a JAK2 mutation.
If I understand it correctly it is a form of blood cancer it makes your platlets over produce which can lead to a possible diagnosis of leukemia.
I take a drug called hydrea and it has decreased by platlets form 700000 to 380000.
I also get confused becaused according to my doctor its a fine line between ET and Leukemia.

Hi @ettap, this post was years ago but curious how things are going now?
If I'm reading correctly you're Jak2 Pos with no diagnosis of polycythemia-vera or other?
What's weird for me is I'm Jak2 Neg with confirmed diagnosis of PV. I was a lucky one and found out during my annual physical, retested 6 weeks later, then was sent to Hematology Oncologist and they did extensive testing & genetic testing.

I used to donate blood at least 3 times a year or more and stopped during Covid. Who knew I was self treating. Grateful I never threw a clot, had a stroke or heart attack which is how many find out they have it. It breaks my heart they destroy the blood, I have (or had) "good baby blood" they could give Nicu babies. I hope one day maybe that changes but I get the liability of it all. My understanding is my blood isn't bad, it's the mutation signaling to make more blood when not needed. I was feeling like total crap until they took 5 pints in about 6-7 weeks.

Hope you are feeling well!

Exactly and well said! Yes, my heme doc says in the early stages this is a blood disorder/ neoplasm with the potential to develop into some more if not treated early. He related it to diabetes; not curable but usually controllable.

It’s a comfort to read comments from others who have been dealing with these MPN’s for years and decades.

Docs have differing opinions. It’s likely that we all are at different stages. Another factor is that not all meds work the same way for everyone.

Stay strong. God bless you and your son!

Hi Remo,
I also have ET w/Jak2. There are a lot of different opinions on this site. Best to talk w/your heme doc. Mine also said I do not have cancer.

ET is essential thrombocythemia, a variation off MPN Myeloprolifertive Neoplasm PV is a variation of MPN, as ET is. There are 3 variations, for the moment I can't remember the third

What's the difference between polycythemia vera and just polycethemia? A lung specialist told me that "they had not yet found the cause of mine".

My age is 32 and I have ET with jak2. For how long I can take hydroxyurea??

My understanding is this is something you will always have to take. Please follow up with you MD though. I have been on it for 3 years with a low dose of ASA. Best to you.

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?