Little freaked out!

[Blue-IvyBoo]

Hi all..soo i finally got a letter back from my hemo specialist and I'm triple negative bone marrow is healthy no abnormalities ..however she wants to start me on hydrea bc my plateletts are around 750 but I'm terrified bc iv read about that treatment and it kills cells in the bone marrow! Any advice?

[Cat1001954]

hi I have triple negative ET hydroxycabamide is controlling my platelets

[Blue-IvyBoo in reply to Cat1001954]

Hi...how long have you been on it?..since I'm all clear with testing im afraid that I'm killing all the good in the bone marrow..

[Cat1001954 in reply to Blue-IvyBoo]

Iv been in it 3years this year

[Mazcd Partner MPNVoice]

Hi Blue-IvyBoo, completely understand your concerns, it is a big decision to have to make when your consultant advises that you start any medication for your ET.

I am also triple negative ET, I was diagnosed in 2003, my platelets were about the same as yours, I have been taking Hydrea since 2008, which keeps my platelets nice and low, around 300 - 350. I was put on Hydrea because I was suffering with lots of symptoms: dizziness; head pain and fatigue, and it really did and still does help with these, and also keeps my platelets down.

There are many people who can tolerate Hydrea very well, but as with any medication, there are also people who can't. Some people who take it do experience some side effects when they start it, like nausea, diarrhoea, but in most cases, this does not last too long and settles down.

I would advise that you read about the different medications on our website mpnvoice.org.uk/about-mpns/... and then have a discussion with your haematologist or your clinical nurse specialist (CNS) about why she wants you to start taking medication.

Best wishes, Maz

[Blue-IvyBoo in reply to Mazcd]

So good to hear from someone in a familiar state.. im going to read the links provided now. Thank you!

[lizzziep]

Hi, I took hydroxy for a few years with no problem, eventually had a skin reaction and was changed to Anagrelide, also for ET. You should be monitored when you start on a drug. Many people take it with no problems.

Hope all goes well for you.

[ainslie]

it’s a bit unusual for a MPN expert to put patients on cyto drugs for platelets UNLESS you have symptoms or other risk factors, if you do have to go on meds there is also other meds such as Peg etc if you are not keen on Hydroxy, the link Maz provided is worth a read

[hunter5582]

I would suggest seeking greater clarity on your diagnosis. In the absence of a driver mutation and with no abnormalities in the bone marrow, then the diagnosis could be something other than ET. There can be secondary causes for thrombocytosis as well as very rare conditions like hereditary thrombocytosis.

Note that one of the elements of an ET diagnosis is Bone Marrow biopsy showing proliferation mainly of the megakaryocyte lineage with increased numbers of enlarged, mature megakaryocytes with hyperlobulated nuclei. Was this noted on your BMB results?

It would be prudent to fully understand your diagnosis prior to making a treatment decision. You may wish to seek a second opinion and both the diagnosis and treatment plan from a MPN Specialist. mpnforum.com/tsr-the-list/ This would help you feel confident in your treatment decisions.

The decision to initiate cytoreduction should be based on an evaluation of your risk factors. Have you had incidents of thrombosis or hemorrhage, age > 60/65, co-occurring medical conditions? Do you have significant MPN symptoms like Mazcd described? Cytoreduction is certainly indicated in some cases but not to simply sanitize the platelet numbers.

If you do decide that you want to initiate cytoreduction, then suggest you evaluate all your treatment options. Mazcd provided a link. All of our treatment options have both benefits and risks that need to be evaluated. These risks need to be compared to the intrinsic risk of an inadequately treated MPN. We all respond differently to each of the medications. I was refractory to and intolerant of hydroxyurea (HU). I have done much better on the interferons (e.g., Pegasys, Besremi). Other people experience just the opposite.

It is important to ensure that you understand the benefits and risks of any medication you take. This is the only way to make an informed decision. Regarding HU, it is correct that it is a form of chemotherapy, specifically an antimetabolite (cytotoxin) that interferes with DNA activity in hematopoietic stem cells and other DNA-active cells in your body. Its antiproliferative effects impact all lines of blood cells (PLT, RBC, WBC) and other cells in your body. Here is some more information about HU that is important to understand in deciding to take it.

drugs.com/monograph/hydroxy...

oralchemoedsheets.com/sheet...

ethrombo.blogspot.com/2017/...

We have all been there with the fear. While it is normal to feel some level of fear when managing a MPN, we need to be objective and base our decisions on facts. It helps to better understand MPNs and the treatment options. There are wonderful resources like MPN Voice mpnvoice.org.uk/ that can help you get to a place to make informed decisions.

Wishing you all the best.

[Blue-IvyBoo in reply to hunter5582]

There's so much wisdom on this platform.. im so grateful.I'm 49 and as long as I can remember iv had slightly elevated platelets..iv had no health problems that are of great concern..no history of thrombosis or hemorrhage.. no real symptoms other then tingly feet and hands and the occasional headache.. my platelets as of late have been on the move im just wondering if this is more of a preventative measure?..im super into natural therapies and the thought of digesting something that is toxic and kills good and bad cells is absolutely terrifying to me BUT.. I do trust my specialist..pharma not so much.. hence my reluctance. Thanks for your time in responding...

[hunter5582]

It sounds like you might be mildly symptomatic given that tingly feet/hands and headaches are known MPN symptoms. These can be microvascular symptoms. These symptoms often respond well to an appropriate dose of an antiplatelet aggregation medication like aspirin.

Given your description, it sounds like you fall into the low-risk group if you do have ET. Cytoreduction is usually not indicated in this situation. Suggest that you seek clarity about the treatment goal in considering cytoreduction. If you decide cytoreduction is in your best interests, then you can consider the other treatment options if you feel HU is not in your best interests.

All the best.

[Blue-IvyBoo in reply to hunter5582]

Im calling my specialist right now for clarity. Your awesome thank you!!

[Blue-IvyBoo]

Ok so I just spoke with my mpn specialist and she told me my rbc count was normal my wbc count was normal and that they have tested me for everything possible, including genetic sequencing ,that could be contributing to the cause and that I truly have her stumped.... they are starting me on Hu as a preventative measure and to see how it effects my platelets... she told me that leaving it would be detrimental eventually... thanks for the insight as to what to seek out...squeaky wheel gets the grease! Cheers!