Jak2 positive

[Tingle20]

I finally got my results back from having high platelets. The nurse told me my platelets are at 800 and my labs came back that I am JAK2 positive. They want to start me on Hydrea. I can’t talk to the doctor till next week. I don’t know what any of this means. I read the medicine is a chemotherapy medicine. Does this mean I have cancer? Help me understand this

[Aneliv9]

It seems like essential thrombocythemia if only your platelets are above normal limits.. It has normal life span so it is the most bening type disorder/ "cancer" of all. My doctor told me that is a 4th class of cancer and that word cancer is only because there is some form of proliferation.

[Tingle20 in reply to Aneliv9]

Thank you for the information.

[bluey298 in reply to Tingle20]

Tingle20 I , have jak2 and i have had it fore about 4 years i have being taking hydrea for some time. I don,t think i have ever worried about it. Maybe it is a blood condition, my platlets have been about 800. I have probility had it fore years and didn,t know it. I keep active on the end of a lawn mower , quite often I feel lack of energy but after a coffee i seem to recharge my energy. I am not young any more but i think young at 70.

[cmc_ufl]

Welcome! There are so many good people in this forum. You will find better information here than anywhere else on the internet.

Technically speaking, ET, as well as other MPNs (PV, MF...) are neoplasms, meaning uncontrolled growth of cells. Cancer fit within the neoplasm umbrella, so MPNs are often described as “blood cancers”, reclassified in 2008 from their original classification as “blood disorders”.

Please do not let the word “cancer” scare you with ET. ET is a chronic condition and is very treatable. Many people live a normal lifespan.

I myself have been going through the diagnosis process for 2 months now. I am possible “triple-negative” ET, meaning my platelets are elevated but none of my driver mutations (JAK2, CALR, MPL) came back positive. Still trying to get answers.

I’m sure Hunter (and others) will give you a warm welcome here.

[Tingle20 in reply to cmc_ufl]

Thank you for replying.

[mhos61]

Hi and welcome to the forum.

Take a look here: mpnvoice.org.uk/. There is a lot of very useful information. There’s such a lot to get your head around when you’re first diagnosed.

The only question I would ask is, why are you being asked to start treatment with hydrea at the age of 45?

The general consensus for younger ET patients is to treat only with aspirin, unless platelet counts exceed 1500, or you have had previous thrombotic events, cardiovascular issues, or are severely symptomatic. Even then, Pegasys would be the drug of choice.

I would advise you to get a second opinion with an MPN Specialist.

Good luck

Mary

[Tingle20 in reply to mhos61]

Thanks for the information. I have been reading a lot of posts and I am finding that Hydrea is not started until higher platelet counts. I started aspirin a week ago. And found out about the JAK2 + mutation today. I do take medicine for high blood pressure. I have a consultation next week with the hematologist to talk about my results

[mhos61 in reply to Tingle20]

This link below is excellent in explaining ‘risk stratification and treatment’ in ET.

If you scroll down the link you will see the four risk categories for potential cytoreductive therapy. These are ‘very low’ ‘low’ ‘intermediate’ and ‘high.’

From what you say, I would think you’re ‘low risk,’ which suggests aspirin therapy - unless you have Aquired Von Willebrand Syndrome. AVWS is something that can happen with high platelet counts in some people. It’s just something to be aware of. If that was the case then aspirin therapy would be counterproductive.

I’m not sure how your raised blood pressure would fit with all of this, but it’s something you can discuss with your health care professionals.

At least, if you read through this link, it will give you some understanding before you consult with your doctor. Knowledge is power!

hematologyandoncology.net/a...

[Hidden in reply to mhos61]

I agree with what you say. With regards to high blood pressure, I believe it is considered a risk factor for cardiovascular complications (i.e. moderate to high risk ET). If the medical team sees it this way, perhaps that explains the Hydrea. Then again, the condition is treated with BP medication, so it is controlled.

[mhos61 in reply to Hidden]

Yes, even more reason to confer with an MPN Specialist.

[Mcrg in reply to Tingle20]

Welcome. I am like yourself, Jak2 +ve, hypertension and on aspirin and put onto HU just over twelve months ago as platelets over 1500. Know 407 this month. Diagnosed autumn 2018 aged 47. Absolutely terrified and scared but this group is full of wonderful people, so.supportive and they do.pit yoir mind at ease. Still have freaking out moments bit who doesn't! I follow the mpn groups on Facebook as well and that's a good support system for me. Good luck.

[Tingle20 in reply to Mcrg]

Good to know that your platelets are down now. Do you feel better with them being in lower numbers. I am always exhausted and kept a headache for almost a whole year. I’m afraid the Hydrea will make me more exhausted. Haven’t noticed side effects yet but I’ve only taken 2 doses.

[Mcrg in reply to Tingle20]

Hi, yes I feel better with the HU. Side effects I.have noticed is weight gain which I cannot shift, hair thinner but I.always have thick.hair and freckles are growing weirdly, clumped together a bit more than usual! It causes photosensitivity so.make sure you have sun cream and face cream with SPF in in. I now.use SPF 15 and this year hopefully they will be okay. Join the Facebook mpn group. Really easy ro natter to people and get advise on there. Xx

[Mcrg in reply to Mcrg]

I do get tired very easily and my ferritin(iron) count is low. As my HB is okay and my Haematocrit is 0.44 they won't let me take iron supplements. My cut off is 0.45 before venesection is needed. This does give me headaches so I increased my water (and cordial) intake and eat lots of green vegetables to help.out. x

[Uzza]

Hi,

Some say it's not cancer but in Australia, it is considered blood cancer. I'd like to say you are in good company, as I am also ET and Jak2 positive. The former indicates high platelets the latter signifies that you have Janus-Kinase mutation in your stem cells. You may have high WCC and high RCC or you may not. I have both. I was Dx at 65 yrs of age, so not so bad. I am retired. I have frequently occurring bouts of fatigue and pain in my periphery. I have been successfully treated with Hydrea until I developed ulcers. I remain on aspirin 2nd daily, as I am on Pradaxa for AF as well. I have also been prescribed Duloxetine on a recommendation by another sufferer which has given me quite a bit of relief for the peripheral neurophathy (see mympnteam.com/resources/num...

Cheers,

Uz.

[ClaraCluck]

Hi, I was diagnosed at 42 with ET. I had no symptoms but following a blood test pre surgery, my platelets were found to be 1600. I was ultimately put on Hydrea, two tablets per day and one asprin. Almost 17 years on, I am still in very good health, have had no side affects of taking Hydrea for so long. My platelets have remained between 350 - 450 over the years. The last blood test showed they were 650, which is unusual for me and is being investigated.

[Turfbeg in reply to ClaraCluck]

Hi, I have just had my regular three monthly blood test and suddenly have raised platelets. I had my first astra zeneca vaccination about 2 weeks before the blood was taken so I am wondering whether the vaccine affected my platelets? Did you have your vaccine just before your blood wastaken for testing. Keep safe! Turfbeg

[ClaraCluck in reply to Turfbeg]

Hi, no I had the vaccine afterwards so nothing to do with that. I had another blood test today so will find out this week 🤞

[hunter5582]

I know you already saw this from others, but yes ET is technically a "cancer" - but it is cancer with a little "c" not a big "C." It is a truism that you are more likely to die with ET than from it. The best way to think about is that it is a condition you need to learn to manage during your life rather than a condition that is likely to end your life. Most with ET will live a relatively normal lifespan. The issues have more to do with quality of life.

Regarding the treatment, people under age 60/65 (depending on protocol) who are not symptomatic would typically be on aspirin-only and monitor. If you are age>60/65 or are symptomatic (e.g. thrombosis, microvascular events, hemorrhage) than cytoreduction may be indicated. Hydrea (hydroxyurea) is one of the agents used. It is the cheapest so many formularies will start there. While it is commonly used, there is disagreement about whether it is the best choice. Some say yes, Others say there are better choices (e.g. PEGylated Interferon). Suggest doing some research on your options and making up your own mind. Also suggest consulting with a MPN Specialist in making this decision. Most hematologists do not have the KSAs regarding MPNs to offer you optimal care.

Here are some summaries that may help.

legeforeningen.no/contentas...

mpnjournal.org/how-i-treat-...

Here are some presentations that may help.

mpninfo.org/conferences/202...

The 2019 version of MPN Molecular Biology is particularly good information.

mpninfo.org/conferences/201...

Hang in there my friend. Please let us know how things go.

[Hidden]

Don't worry, my haemo says she has a patient in her nineties who has had it for 20 years. I have the same as you and my platelets started in the 800 s. She keeps adjusting the hydro dose and they are now 515 and she wants me to get to 450. I have been ok on the hydro just a bit tired sometimes. You will be fine

[bomber55]

It is a form of blood cancer, however my oncologist states its not a type of cancer that most think of, if it is Essential Thrombocythemia the biggest concern is the high red blood platelets mine when diagnosed 4 years ago now was in the millions-my doctor said it wouldn't be the blood cancer that would take my life but need to keep the platelets down norm is 150-450 range mine tend to fluctuate. He did let me try the natural remedies that i had read about which was: Garlic, Aspirin, Dark Choc., Ginko, and Red Wine-it worked for about a year but then they climbed again so put me on the Hydrea started at 500 once a day and had to increase to 1000 mg every day have taken now for about 3 years I take it at night and have no problems and my platelets run between 450 and 550 which they say is ok the biggest concern is the heart, I also take blood pressure meds for high blood pressure but I've again had no problems am healthy otherwise, work everyday, am checked every 3 months with blood draws, initially they did a bone marrow to rule out Leukemia which is opposite that is low white blood platelets which I did not have. I still do the Ginko, Garlic, and aspirin and really dont even think about it. But I am also a 20 year breast cancer survivor

[shiftzz]

Don't worry about the C word. I was diagnosed with PV 6 years ago. my platelets Were 1262, my hermacrosit was 0.621. Felt like rubbish, I was put on aspirin, had loads of venesections, plus hydroxycarbamide, I was on 17 pills a week,numbers came down, put me in interferon and reduced my hydroxycarbamide to 3 a week.my hermacrosit numerous is very important, my target is 0.450, any number above that I have a venesection. I know the C word can be frightening, as long as they keep your numbers under control, you will be fine.. stay safe.

[Threelions]

HiI’m ET jak2+. Was diagnosed a couple of years or so ago.

Some wonderful & knowledgeable people on this forum, as you’ve already seen.

I’ll just add that I’m sure you’ll be ok. Cancer is just the group that the condition falls into (favourably my prescriptions are now free as a result of the clarification 👍) but it’s not a life sentence at all.

Important thing is to have the right treatment to manage it and then try and get back to enjoying life x

[tracey13]

My husband has post PV MF it's a form of blood cancer the word cancer absolutely frightens the hell out of you.

These blood cancers can be managed and you can live a normal life .

My husband was diagnosed at 41 he's now 49 apart from extreme fatigue he's been quite well.

He's now on ruxolitanib medication and it's really changed his life he's back to normal in himself.

No exhaustion his spleen has reduced in size and all his bloods are in normal range now.

Tracey

[Tingle20]

I went back to my hematologist yesterday. He confirmed that I do have a mpn. He has prescribed Hydrea 500 mg every other day. I go back in 2 weeks for labs to see how my body is responding to the treatment. He keeps saying it’s not cancer. I guess he doesn’t classify it as cancer. I have read enough to know that it is and that it is manageable. Thank you to everyone for the information. This site has helped me understand a lot.

[Cja1956]

I’m glad you have a diagnosis but you didn’t say which mpn you have or if you have any gene mutations. The treatments are different depending on one which one you have. There still seem to be questions that you need to ask. Good luck to you on your mpn journey.

[Tingle20 in reply to Cja1956]

I have ET JAK2 +

[Cja1956]

Ok. That was my original diagnosis in 2008.