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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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1995victoria | @1995victoria | Aug 24, 2023
In reply to @claire39 "I totally agree and I listen to my blood doctor as she is the top hematologist..." + (show)
@claire39

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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Essential thrombocythemia is an example of a myeloproliferative neoplasm. These are blood cancers that happen when your body produces too many blood cells. from Cleveland Clinic
from JohnsHopkins
Myeloproliferative neoplasms (MPNs) are a group of blood cancers in which the bone marrow produces too many blood cells. When this happens, patients are at risk for blood clotting or bleeding, bone marrow scarring and enlargement of the organs. Most patients affected are in their 60s or older. There are no known cures for most MPNs, although stem cell transplants can help people with myelofibrosis. Still, many patients can experience few or no symptoms for long periods of time, and people with these cancers can live for a long time with proper monitoring and treatment.

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barblee973 | @blkalydy973 | Aug 24, 2023

I see the Oncologist in October and will again discuss the dosage. He did not want to reduce it last time as platelets are in the 450 range. He wants to keep it below 500 (a big reduction from 1700! when they discovered this condition.
We did reduce the low dosage aspirin to 1 every other day due to excessive bruising. Thanks for the responses. I did see the one from the dentist and I will discuss with dentist re mouth sores which I don't have at the moment.

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nypara66 | @nypara66 | Aug 24, 2023

Great to hear that someone on here has been taking this for so long and it’s still working. The other medication choice is newer and is very expensive and has a different bunch of side effects to watch for. Hydroxyurea has been around since the 1960’s. I hope it keeps working for me. I’m just eight months in since my PV Diagnoses.

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bonnieshaffer | @bonnieshaffer | Aug 24, 2023

I have MDS/MPN with Thrombocytosis which means I have very high platelets (over 1.2 million). I was originally diagnosed with MDS in early 2021, and then developed ET in March of this year due to a JAK2 mutation.

My Hematologist/Oncologist told me that my ET is definitely cancer. I am taking 500 mg a day of Hydroxyurea and will need to take it for the rest of my life. I have no side effects at all from the drug.

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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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1 reply
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.

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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
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!

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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)
@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)
@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)
@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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