ET PLATLETS

[VTAR24]

Hi i was diagnosed with ET cal r mutation a year ago I am 47 went to my gp for normal blood tests and that's hw this all started I was suffering from headaches vertigo and other things so my gp refer me to hematologist who carried out loads of other bloods and came back with this to me I was so shocked with this news but he told me it was manageable with routine check ups so a year later I'm on asprin and started 90mg of pegasys in March this year which I am doing ok with but platelets are up and dwn lowest 780 and highest 1110 which I was so anxious about but my hematologist tells me this is noting to worry about as it can take a while to get dosage right I feel fine just tired in the evenings and no problems with pegasys also lately feeling very hot at night and now I'm worried are things goi g up more does anyone have this experience at nite time bk into hematologist in 3 weeks .

[Cat1001954]

night sweats are a symptom of ET I have it

[Ipadlin]

I started having night sweats just before I was diagnosed and my platelets were slightly under 1000. I was put on hydroxy and my platelets dropped, then increased before gradually dropping to around 400. (I’m eight months post diagnosis and the dosage is still being calibrated.) The night sweats stopped when I got below 800.

I’m not suggesting this is typical or a target to aim for just that the lower count seem to reduce the symptoms

[hunter5582]

If I recall correctly, you are age 47 with a CALR mutation. I believe you have been symptomatic with headaches and sore feet, but I do not recall that you have experienced thrombosis. If you are age <60, CALR, no history of thrombosis, no co occurring medical risks conditions, you would be considered low risk and cytoreduction is not indicated per the NCCN guidelines. nccn.org/patients/guideline...

The other situation where cytoreduction is indicated is if your platelets have been so high that you are at increased risk for hemorrhage or possibly Acquired von Willebrand Disease. Many doctors look at the risk level threshold as 1.5 million, but bleeding risk can occur at lower levels than that. Have you experienced excessive hemorrhage at your baseline platelet levels? this would be a factors in considering cytoreduction. Seeking symptom relief such as headaches would also be a consideration.

Besremi cost is 4x/Pegasys. ($4,200/month vs $16,800/month) The cost of hydroxycarbamide is much lower ($25/month). Besremi is only approved for PV, so getting it approved for ET could be a big challenge. You may find your cytoreduction options limited to hydroxycarbamide and anagrelide.

The decision you will need to make is based on what your treatment goals and risk tolerance are. Does benefits of hydroxycarbamide (or another med) outweigh the intrinsic risk? Would you be better off seeking symptom relief though other treatment options and not engaging in cytoreduction at this time? There may not be a clear answer to this question. It is a matter of your judgement in consultation with your MPN care team.

Wishing you success moving forward.

[VTAR24 in reply to hunter5582]

Thanks hunter you are a wealth of knowledge when it comes to this yes u are right I am Cal r I been told by docs the main symptoms I do have is headaches which they have upped the aisprin to 150mg a day which has helped and they have told me to take a B12 for sore feet and stiffness in fingers and see hw that goes also switching to hydra has me worried as they tell me it's a low dose chemo tablet until they see what happens with replacement for interferon I'm not sure what to do as I've heard ther are a lot of side effects to hydra so confused really

[hunter5582 in reply to VTAR24]

We are different in how we respond to these medications. If you believe hat continuing on cytoreduction is in your best interests and PEG is not available, then hydroxycarbamide (AKA hydroxyurea - HU) is another first-line option for ET.

HU is a chemotherapy AKA cytotoxin AKA antimetabolite. It works by inhibiting DNA activity in hematopoietic stem cells and other cells in your body. Like all of our choices to treat MPNs, it comes with potential benefits and risks. You will need to objectively evaluate the benefits and risks to see if it is the right choice for you. Regarding the "low dose" issue, that would depend on the recommended dose. Standard for many is to start on 500mg/day, which is the dose available in the generic form. However, HU comes in lower doses in some of the brand name formulations (Siklos = 100mg, Droxia = 200-300-400mg). You would need clarification of the recommended dose to determine whether the dosage is low.

As Mazcd suggested on another thread, it would be best for you to educate yourself about HU so that you can make an informed decision. Here is some additional information that may be helpful.

drugs.com/monograph/hydroxy...

epocrates.com/online/drugs/...

oralchemoedsheets.com/sheet...

ethrombo.blogspot.com/2017/...

All the best.