Are there any older people with Essential thrombocythemia and Jak2 not taking Hydroxyurea or other similar drug?

[NibsNanna]

Essential thrombocythemia and medications

[Jynx93]

I’m 61, ET Jak2 I was put on interferon straight after diagnosis even though my platelets weren’t exceptionally high when diagnosed. 540. I was put on it straight away because of a previous pulmonary embolism 23 years ago. I would have only been on aspirin and watch and wait if it wasn’t for this

[Mostew]

I resisted taking meds for 2 years . Platelets slowly increased . I decided to take low dose hydroxicarbamide every other day when they went up to 965.. Have you any symptoms that are concerning you ? .

I knew instinctively when I needed to take meds.

Hope you are feeling OK

[NibsNanna in reply to Mostew]

Hi- thanks for your response- I also have Hashimotos so fatigue is common with that. I don't have high blood pressure, not overweight, no heart issues, no history of thrombosis, so struggling with the idea I need hydroxyurea. Currently on daily aspirin (as well as thyroid meds) Getting a second opinion soon).

[Hydranga18 in reply to Mostew]

Have your Platelets come down , by taking Hydroxycarbamide every other day …

[Mostew in reply to Hydranga18]

Yes . Slow and steady with I'm happy with .and Prof Harrison, .One local Dr. At hospital advised increasing from 960 to 630 . But last time I had bloods I had a stomach bug . So that could be why didn't go down much.

[Hydranga18 in reply to Mostew]

Thank you for that information, I hope you continue to make progress.. I am on 500 mgms daily , last Platelet count 620.. but Im finding it difficult to take.. I have burning sensation of my tongue and a small sore or ulcer which is very uncomfortable, 🙏🏽

[Jones51 in reply to Hydranga18]

I have the same burning sensation on my tongue..since my increased dose of hydroxy...and feeling very tired 😩 I had a little tiny sore on my tongue which caused so much pain....!!!

Lucky it disappeared after 5 days .

Hope your feeling better x

[Hydranga18 in reply to Jones51]

Thank you for replying.. yes its very painful.. and worrying. Seeing my GP tomorrow .. for reassurance and perhaps something prescribed to help heal .. not sure if its Thrush related due to lowered immunity .. 🙏🏽

[Murdoch01 in reply to Hydranga18]

I also get little ulcers in my mouth and on my tongue, I rinse with Luke warm salt water in the evening and in the morning and it quickly heals until next time. I find it happens when I get a little run down.

[Hydranga18 in reply to Murdoch01]

Thank you, that has reassured me… wishing you well 🙏🏽

[Sprat19]

How old are you thinking. I am 61 on peg interferon. Was on aspirin alone till couple months ago. Original plan was to start cytoreduction age 60 but this was delayed due to covid

[Sprat19 in reply to Sprat19]

Should have said MPL ET here

[hunter5582]

Depending on which protocol is used, SOP is to start cytoreduction at age 60 or 65. Not all docs follow this protocol, taking a more individualized approach to treating ET and other MPNs. We do not all age at the same rate. My doc told me "65 is the new 35." I like that doc.

All that said, you have to decide for yourself whether the benefits of cytoreduction outweigh the risks based on your own profile. If you decide to opt for cytoreduction, then you have to decide which of the two first-line treatment options you wish to pursue. Hydroxyurea or Pegasys. Some healthcare systems prefer to start older patients on hydroxyurea since it is so much cheaper. You would need to review your options with your provider if you opt for cytoreduction.

All the best.

[NibsNanna in reply to hunter5582]

Thanks- not aware of any symptoms (except those associated with Hashimotos which I also have). Age 73 and jak2 seem to be the criteria for prescribing Hydroxyurea- no other risk factors for thrombosis.I'd love to see some stats which show what the risk level for thrombosis is, given the above. I've read I'd be at 'high risk' but this is not defined e.g. does it mean 30%? 5% etc.

[C2Cnext in reply to NibsNanna]

You’ll be looking a long time for some data that quantifies risk of thrombosis that includes lifestyle factors. There is a seminal study on impact of HU and thrombosis in a sizeable population (high risk as defined by the WHO) but it does not report on lifestyle of either the no thrombotic event or those who had a thrombotic event. See image with the graph from this report. I also recommend watching the source video from 2021 by the Leukaemia and Lymphoma Society of Canada called understanding myeloproliferative neoplasms (just soldier through the awful first minutes of tech issues).

I wish I could be critical of the medical research community for not measuring BMI and activity levels etc, but docs are not trained in nutrition and what patient wants to hear ‘you’re a lazy tub of lard with way too much processed food in your diet’? So it is not widely measured and therefore it’s not a variable that can be controlled for and reported on in large retrospective studies.

A consideration for you in deciding whether to go on HU is that a directive for avoiding thrombosis in the general population is doing physical activity. Can you keep ET blood flowing sufficiently to avoid thrombosis by an active exercise program? I haven’t seen any research that addresses that question. Though as I am retired and have the research training to do it, I am tempted to start one 🤣.

There is an alternative thesis about the role of diet (not exercise) in MPNs. Angela Fleischman at University of California Irvine is researching if inflammation drives the faulty JAK-Stat inhibitor and our wonky blood counts, and is investigating the impact following a diet high in antioxidants on MPN disease manifestation (symptoms) and I believe she’s also looking at progression. She’s got some great presentations on You Tube if the idea takes your fancy.

Good luck with the decision making.

Screenshot from presentation about MPNs by The Leukaemia and Lymphoma Society of Canada

[ChillyAsh34 in reply to NibsNanna]

I am 71 diagnosed from a bloodtest for underactive thyroid had it for 30 years came back high platelets 525 result ET Jak 2 positive no symptoms no history of clots strokes etc put straight on hydroxycarbamide due to age deemed high risk no other health issues take low dose aspirin

[hunter5582]

If you decide to move forward with cytoreduction then the Hashimotos would be relevant. The is a caution with Pegasys if you have an autoimmune disorder. This is something you would need to review with a MPN Specialist. Most hematologists will not have the KSAs you need as MPNs are such rare disorders.

The other options are hydroxyurea and anagrelide. I have heard that Jakafi is not readily available in Australia. Not sure about that one. No matter what, it is important to consult with a MPN Specialist about your case. With a cooccurring autoimmune disorder this will be essential in getting an optimal care plan. There are a few MPN Specialists in Australia on this list. mpnforum.com/list-hem./

All the best

[Uzza]

Yes, I am 68 in November, Dx Jak2 and have essential thrombocythemia...and I do not take anything for my condition now. Post Hydroxy, my cell lines approached the normal limits and because of ulcers, it was discontinued. I cannot take aspirin as I have had two bleeds when I did take it in the past, it was then decided to depend on Pradaxa for anticoagulant.

Cheers,

Uz.

[Scaredy_cat]

I was jak2 ET for 25 years and all I had was low dose aspirin. I'd had a portal vein thrombosis at the start so that is why I was on the aspirin. I kept relatively low platelets. I was 68 when ET changed to MF

[Franklyspeaking]

Am 73 with Et Jak2 positive and I take a baby aspirin daily. Other than night sweats I have no other symptoms and no other medical issues. Platelets hover around 440 since diagnosis in Dec 2019. As Hunter has said treatment is very much individualized and I know I am very fortunate that I have not yet had to consider hydroxyurea.

[NibsNanna in reply to Franklyspeaking]

Thanks for that - did your haematologist tell you you were at 'high risk' of clots? I'd love to get a definition of 'high risk' so I have that info before deciding whether or not to start on Hydoxyurea

[Franklyspeaking in reply to NibsNanna]

Initially she told me that because of my age I was considered high risk and she wanted me to begin hydroxy. She sent me home to think about it. At the next appt, one month later, she made no mention of hydroxy and told me we would take a wait and watch approach. My husband attended both these appts with me and commented that it was like seeing 2 different doctors. Because my haemo works at a teaching university which is attached to a specialized Cancer hospital with at least one MPN specialist I can only guess she asked him for his opinion. Otherwise my case would have been treated “according to the textbook”. It certainly seems in my case someone looked at my overall condition not just my age.

[MaggieSylvie]

I'm 77, triple negative and just on 75 mg aspirin. I also have MDS and have a weekly Epo injection. Blood tests every 3-4 months shows red blood cells are increasing little by little and platelets are dropping little by little. I get tired, but no other symptoms, and since I also suffer from fibromyalgia, tiredness could be put down to that, or - my GP was trying to say I had an - underactive thyroid which I don't believe. Sorry, I don't know what having Jak2 adds to having ET.

[givingITMybest]

I'm 70 years young and was diagnosed with E.T. in the fall of 2019. I had been on hydroxyurea until last August. I began a trial of a study medication, Bomedemstat, in January. It is a phase two study. The primary side effect has been dysgeusia and initially some intestinal upset. But that has resolved itself with nutritional guidance. Hope this is helpful.

[EPguy in reply to givingITMybest]

Neat to be in that trial. The dysgeusia seems to be very common with Bom. Do you sense some sorts of improvements on Bom over the HU?

[Lena70 in reply to EPguy]

That's a side effect I don't think I'd want to deal with. My main hobby is cooking. I'd probably end up deeply depressed if I couldn't taste or had altered taste.

[givingITMybest in reply to EPguy]

I experience less fatigue on bomedemstat than hydroxyurea which is a big bonus for me. I've passed the first stage of the study and now my dose has been adjusted down. The metal mouth is much less. we'll see if my platelets behave on this dose.

[EPguy in reply to givingITMybest]

I switched from HU to Besremi. Quitting the HU also seems to have been good for me. Biggest change is reduction in vertigo and the like.

I've seen dose reductions discussed for the Bom trial. Could be Bom will work well at the lower doses.

[givingITMybest in reply to EPguy]

I'll post in a couple of months to provide an update.