Treatment dilemmas

[SpendyWendy]

Hello

I have ET ( Jak2) diagnosed in Feb 24-I commenced HU 500 mg 5 days per week increased to 6 days platelets about 450 my Liver function tests (LFTs) became deranged & my Gamma GT sky rocketed so I stopped HU end of Aug on the advice of my MPN consultant - I have just been on Asprin 100g daily & my LFTs are normal & gamma GT has steadily reduced to near normal. My platelets have been steady 450-480. Yesterday they were 520. I feel really well no symptoms . I’m 66.

I saw my consultant & specialist nurse yesterday! We had a good discussion. She is happy my LFTs are now normal & my gamma GT is continuing to drop. My platelets are only marginally elevated so we discussed risks of clotting & bleeding. As I’m over 65 my risks exponentially rise as I get older - she gave me 3 treatment options -

1. restart Hydroxy low dose 3 times a week & hope my liver behaves & it just keeps my platelets stable.

2 immunotherapy (interferon injection) but no good if my liver can’t cope & I really don’t want it as side effect frighten me.

3. Start Angrelide which she says has gone out of favour now but she has used it on others successfully. It might suit me for a few years but it can cause fibrosis of my bone marrow and/or affect my heart so 🤔I would need close monitoring! She wants to wait until I have my echo cardio gram due next Sunday.

We went through all my risks according to the data & she asked me my thoughts so I said I’d prefer no treatment as I’m away for 3 months. She has agreed with me- I know the risks & I’m being sensible & she knows I’m proactive. So I’ll go back mid June to decide -🙏 my platelets don’t go crazy in the meantime. We discussed booze we agreed it’s best if I stay off it as I’m obviously really sensitive after the Hydroxy which she believes started the reaction in my liver!

I’m getting excellent care at Addenbrooke’s, Cambridge - I feel able to advocate for myself as an ex nurse & believe I am being listened to so I have no complaints at all.

At least I’ve had a liver ultrasound & blood tests etc ( all normal) so I know there is nothing else sinister going on. I’m otherwise well - I take thyroxine, I’m on anti hypertensives, Vit b12 & asprin.

I wonder whether anyone else has had a similar reaction to HU & has experience of Angrelide.

I truly want to stay off any treatment until my platelets increase more & just continue my asprin. But I’m not sure long term it’s the best option. . I feel so well I just don’t want to feel ill with medication at the moment so I’m at a loss! I would welcome any feedback if others here have had the same dilemma.

Thank you for your thoughts.

[hunter5582]

Glad to hear that you have such a good relationship with your MPN care team. That makes all the difference in the world.

Your plan to take a holiday from cytoreduction makes good sense. I think your risk / benefit assessment is right on target. Unfortunately, we cannot all tolerate HU. I was also unable to tolerate HU, though I had different side effects. I did much better on the interferons. Having said that, Besremi did push my LFTs to 3x / ULN. My Integrative Medicine doctor prescribed Milk Thistle Extract, which is used in Integrative Oncology as a liver protectant. It restored my LFTs to an acceptable level. Please note that I do not advocate using complementary health supplements without expert medical advice. That is why I consult with the Integrative Med doc.

WIshing you a happy med holiday and success when you resume your cytoreduction.

[SpendyWendy in reply to hunter5582]

Thank you Hunter as always I value your comments so much

[Amethist]

it’s good you have a bit of time to think things over and delve into what would be your best course of action, one that you would be happy with.

Pubmed is a great resource. Don’t be put off reading these papers, they are not as tricky as you might think. Always look first to see if they have stated any “ conflict of interest “ usually towards the end , and if yes, then don’t bother with those papers. Look at others .

Put in ET then the treatment you’ve been offered (or anything else you want to consider. )

Don’t forget you always have the option to do nothing, especially if you have no past history of thrombosis.

If it was me l would look to see if the comment “As I’m over 65 my risks exponentially rise as I get older “ is actually true and what the evidence for that is based on. How many people in the study, ages, co-morbidities, what drugs they had been on , how long etc. Of course the study won’t say if they are overweight, eat terrible food etc There are many factors that cause blood clots and the majority of people who get them don’t have ET.

A nutritious diet, correcting any deficiencies is very important. Eg: avoiding processed food, sugar etc

drugs.com is also useful for checking the side effects for medication. Look at the professional version so you have the same info as your Dr.

If you only want to stay on aspirin you have every right to do that. It’s 100% your choice. Don’t be coerced in to any decision you are not comfortable with.

All the best !

[SpendyWendy in reply to Amethist]

Thank you so much for your feedback! I will definitely check out those studies. I appreciate it.

[Ford32]

Hi, I'm 72 , felt well , I was diagnosed with ET & MPL gene in Nov 24, on Aspirin , although my platelets 635 have been slowly climbing for the last 2 years & I bought it to my GPs attention after getting my blood results? and after doing some research.Hemotoligist started me on 500mg Hydroxy, with a blood test after 3 wks,, had no side effects, other than very tired, 2.5 wks I got this throbbing pain between my shoulder blades, first night I controlled with paracetamol, I phoned the chemo nurse & asked her of the hydroxy could be causing the pain, she said no, next day pain came on again put myself to bed, got up a few hours later & collapsed and was rushed to ED.

Very scary, my platelets were below normal,

However LFTs were off the scale,I have acute liver Injury, kidneys took a huge hit, and Anemia. And in hospital taken off all meds, as my liver was so damaged, for 8days seriously, ill

My ? to the Hemotoligist is why put me on such a high dose hydroxy, & surely they should check your bloods weekly. ? He replied that's just the Normal time, after 3 wks. 🙄

It's over 5 wks since I came out of hospital, my LFTs are slowly coming back, , I'm breathless when going for a walk, & it has effected my eyesight, and energy levels

. My platelets are starting to climb, continuing with the Aspirin,

My advice is to insist on weekly bloods, when starting this agressive treatment, leaving it for 3 weeks was a huge mistake , on the Drs.

Wishing you all the very best, and totally, understand you being weiry of the next treatment , me too.

Take care xx

[SpendyWendy in reply to Ford32]

Thank you for sharing your experience. I agree it’s very scary. Especially if the meds are causing you more problems than the ET. I’m going to just continue with asprin & maybe increase the dosage & leave the cyto reduction until my platelets increase a lot more. Take care of yourself & hope you feel better soon x

[Cja1956]

Your platelets are not that high. My normal for several years was between 700 and 900. My opinion is if the drugs are causing these serious side effects, and you feel healthier without them, I would just make sure that they monitor you closely and keep doing what you’re doing.

[SpendyWendy]

thank you very much for your reply. It feels good when others confirm your thoughts. I will opt to stay off treatment but ensure I’m closely monitored.