JAK2 ET diagnosis

[03271115]

I was diagnosed with essential thrombosis in 2019. At the time my platelet count was around 475. I was put on a low-dose baby aspirin and since then my accounts been hovering around 400. I know I’m very lucky, but I’m still having a lot of bizarre side effects: itchy burning skin that bleeds, rosacea, hot flashes... Just curious, the fact my platelet count is only 400, does it mean that I may get better? I had a bone marrow biopsy and I 100% have the JAK2 mutation. It’s all very confusing and my doctor blows me out of her office i. 10 minutes telling me I am fine because she only sees the platelet numbers and does not care about my symptoms. She is very dismissive as if I am wasting her time.

[Mostew]

First thing I would do is change dr. Do you have an MPN consultant who you see at hospital? Better to discuss symptoms with them as GPs generally don't have much ,if any, knowledge of our type of cancer.

No it won't be cured , but should be manged so that you can live a normal life Span

What are your other blood test results . ? All in range?

Others here will be able to point to what symptoms you display may indicate.

Do you have a good way of eating ? Anti inflammatory, ?

Do hope you find out what's causing symptoms. And so start to manage them

[Jennytheb in reply to Mostew]

Was just going to suggest exactly the same!!!

[Mav-]

hi. I was 47 when I got diagnosed . No symptoms at the time . Just two routine blood tests flagged up high platelets. Which required a visit to heamotology . Essential thrombocyemia jak 2 was diagnosed. I have not to date had a bone marrow biopsy. My platelets in dec of last year were around 927. Last few blood tests (checked every 3 months) they have remained stable around the 750. Like you I’m on low dose aspirin.

What I’ve noticed is the tiredness. It can be horrendous. (I’m now 53 still in work) I can feel hot occasionally but out this down to age (female) and yes my cheeks can flush. I’m an exercise maniac and would class myself fitter than ever. I had a bad spell a few months back of chronic fatigue. Turns out my iron was low. It’s been much better last blood test. I took it upon myself to cont iron supplement every other day. As like you say the doctor seems very submissive of any symptoms I tell them about. Only interested in platelet count. I very rarely see my heamotology doctor. It’s easier for me to get my local Gp to take them and forward to my heamotology nurse. Who then rings me day of my clinic appointment. They have no great concerns as I’m not in their eyes a high risk. As I’m not overweight. Not diabetic .

I’ve researched this. As I’m sure you have . What flags up for me is headaches. Vision changes and chronic fatigue.

Now I’ve had the dizziness which we think is from sinusitis and a mastoid fusion around left ear. MRI brain scan picked this up . I have a problem with my left arm ( I’m sure trapped nerve but being high risk for stroke they had to rule this out ) now being referred to ent and neurology ( yet I feel fitter now than ever before. It’s bizzare!)

Not sure if this of any help. Just my story so far.

I feel it’s a rare condition therefore not much is known about it. More research is needed.

Not sure how the condition is classed in the states. But here in the UK it was a blood disorder that became a blood cancer when I was diagnosed . Think that was 2018

[MissLesley13]

I also would ask to see someone else. You can get bad side effects of the E.T . I know I have had suprise bleeds, night sweats, bone pain, confusion. You name it. You have a rare blood cancer and you should be listened to with any concern . Whether a diagnosis or not. This is such a shame that you are getting fobbed away. I know that the specialists would like our platelets at a normal range but they must understand the silent worries we have etc. I really hope you get some one who can help with this take care x

[Solyesh]

It sounds as though it is time to consult with an MPN specialist. Most hematologists, let alone GPs, have very little direct experience with MPNs. It is not too surprising that she is focusing on platelet level only as this is likely the only clinical indication with which she is familiar. But what should be surprising is that she is being dismissive of your symptoms..doctors need to learn to listen better to their patients and we of course need to be our own best advocates.

do you know your allele burden? did they test for any additional mutations? are you remaining bloods within normal limits? this disease is as individual as we are and if you are presenting with symptoms affecting your quality of life they need to be taken seriously....good luck in finding a MPN specialist and hopefully finding better care...

[ainslie]

sounds like you need a new doc. With current treatments ET won’t go away it is very treatable and quite possible to live a normal lifespan. The symptoms can get better though, itching is often a MPN symptom , not so sure of the hot flashes, that could be hormonal?

Some get good benefit from itching with beta alanine , there have been many posts on beta alanine here you can search for, I had UVB phototherapy , some do well on antihistamines.

Leaving you with those symptoms and just saying your platelets are okay so out of the office is unacceptable, try to educate yourself on ET and if poss get another doc or see a MPN expert who can hopefully keep your local Haem in line and advise you of the best plan for you.

400 is good if no cyto meds, normal in fact, so that’s a positive, cyto meds may help with the symptoms but with platelets at 400 assuming you don’t have other risk factors most docs possibly may not prescribe cyto meds but that’s a discussion for you to have with a better doc.

You don’t say what percentage your Jak2 is, that may influence a docs advice on meds or no meds.

It’s worth noting that people can be Jak2 positive and not have a MPN.

In summary , it’s quite positive you are not very proliferative , platelets are low, you just need to find a better doc to help with the journey in general and the symptoms, symptoms are very important and your doc should be helping more.

[Cja1956]

You definitely need to see a Mpn specialist. What are your other counts? There are other medications that may help you. In the meantime, you should go to a dermatologist to address your skin issues.

[hunter5582]

The short answer is that you can experience MPN symptoms like you describe even if your platelet numbers drop down to 400. It is more about how the platelets behave than how many of them there are. In addition, the overproduction of inflammatory cytokines is also a cause of MPN symptoms.

There is no question that you need a new hematologist. One should never be blown off when they are having bothersome symptoms. Many doctors, including hematologists, have little experience with MPNs. It is best to consult with a MPN Specialist. Here are two lists you can reference to find a new doc.

mpnforum.com/tsr-the-list/

pvreporter.com/mpn-speciali...

[monarch5000]

Need to know your other blood counts: WBC/RBC/HGB/HCT/MCV/RDW/ and a one or two paragraph summary of your bone marrow biopsy report findings.

[03271115 in reply to monarch5000]

doctors have never shared this info with me. My doctor never mentioned it, so I assumed all my levels were in check. I just need to find a doctor that understands ET. In Mos Angeles, they don’t k ow anything and they could care less. It’s very sad and lonely!

[Hbm1]

I'm so sorry you've suffered this treatment from your Doctor, all too common I think. My immediate reaction is to ask if you've had your B12 levels checked?

If they're at the low end of the 'normal' scale, this may not be good enough. In brief, I suffered from many and varied symptoms that started last year. In May this year I was diagnosed JAK 2 positive and E.T. My platelets however have never been very high (about 550 at highest). Was put on aspirin and hydroxycarbamide in May. The Doctor also put me on Lanzaprazole to counter the effects of the aspirin. After an initial pick up in my symptoms, almost all of them started to come back after a few months. I had to do my own research and came up with a B12 deficicency which was possibly a low level problem a year ago but became worse with the medication. Asked my GP about this 4 weeks ago and there and then he gave me a B12 injection.

To say my life has change would be an understatment. I actually feel normal again. My B12 level was at the low end of normal a year ago and was even lower in August thus leading me to believe that various medications interfered with the absorption of B12 from food. I was given my first hint of this problem on this forum and I shall be eternally grateful. Three GPs, 2 Haematologists and a Neurologist have all missed this!! I would urge anyone with unexplained symptoms - tiredness, fatigue, tingling feet, dry eyes.....have a test and don't accept the results as OK if they're the low end of normal. I am going to post this again as a separate item because I feel so strongly that this issue may be being missed.

[Pogm]

As soon as I saw the word" dismissive" it surely means you are unhappy and deserve to be seen by a MPN specialist. Your health comes first. I have PV and though my local hematologist is good I knew I had to reach out to someone who specializes in MPN's. Do the research and even if it means traveling a bit, well worth your time. Good luck!

[dogsandhorses]

Sounds like you have the same Hematologist I had before! I have no advice about treatment that would help, but I would definitely get another Dr. They are not all that bad.

[Zeppelin11]

I wouldn't go any further without seeking a new Dr (if you have the option). I have been through the wringer and every Hematologist is so different. I now have an MPN Specialist and he and his staff cater to my every need. This is our normal so having a dr that is proactive is essential. That being said, I'm sorry to hear about the side effects you are experiencing and I think are worth noting and putting focus on. Wishing you all the best.

[Meatloaf9]

Looks like it is time for you to blow off your current Doc and find one who cares. Use the list provided by Hunter and find a MPN specialist at least for a consultation and get their opinion. It is likely that you may only need to see them once a year along with a local Doc to check your bloods more frequently. I did that for about 4 years until my ET progressed to PV. Best to you going forward.

[LeoTravels]

Good Morning from Sydney Australia!

I have found that any condition like ET and any combination of medications requires specialist care from different doctors. I had 7 at one point all addressing different symptoms of the same disease/underlying cause, a Dermatologist should be on your list - they will be able to provide prescription & non prescription treatments that will help you feel better.

We must all be proactive and ask to see Specialist doctors to treat all of our symptoms. in Australia that is fairly easy to do, I’m not sure about other countries. Don’t suffer in silence x

All the best to you.

[Lifam]

I absolutely agreed with the others, that most(if not all) GP have minimal knowledge of our types of cancer. You need a MPN specialist/haematologist to treat give you right treatment.