More decisions!: Hi, after my last post when I... - MPN Voice

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More decisions!

azaelea profile image
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Hi, after my last post when I decided to go ahead on Hydroxycarbamide which I've been taking for just over 2 weeks, I have now been advised by my Radiotherapy doctor to stop taking it right now as I am due to start 3 weeks' Radiography on 22nd October following a Lumpectomy for breast cancer in July. My Haematologist left it to me to contact the Radiotherapy doc , so as I have no point of contact with Haematology I am not sure if I should keep the fortnightly blood test and consultation with him as I had only had 2 days on the increased dose (1 gram) Hydroxy before stopping completely. I shall attempt to find out ! In hindsight, as Haematologist knew I would be having Radiotherapy shortly I don't know why he started me on Hydroxy till after breast issue had been dealt with. I am remaining on Aspirin. Does anyone know if Hydroxycarbamide prevents the clotting aspect of E T or does it only deal with lowering platelets and symptoms? Up to now,touch wood, I am symptom free, only referred because of high platelet counts. Be thankful for anyone's thoughts.

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azaelea
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john0084 profile image
john0084

Sorry to hear about your experiences with haematology, I can't offer you much advice as I've only just diagnosed with prv. But you will find lots of helpful folks on this site. Hope it all works out. Regards john

Ebot profile image
Ebot

Hi. I can only say that when I needed urgent (minor investigative) surgery my haem Prof was very particular about the extent of the surgery - the amount of incisions and the time under anaesthesia. Had I had to have further (more major) surgery she said I would require drug treatment first to address my platelet count. Thankfully all was well.

I’d infer from this that lowering the platelet count impacts on other factors like relative risks of bleeding / clotting issues and general symptom burden. I’m sure someone will give you a more technical explanation! I do wish you well. It sounds as if you have a lot on your plate. I also wish you strength.

Wyebird profile image
Wyebird

What a predicament. I’d try very hard to discuss this with your heamotolygist. I’m no expert but hydroxicarbomide affects lots of blood components. I’ve just started taking anagrelide (in addition to hydroxy) which only affects your platelets. You have enough on your plate without having to deal with all this. I do hope one consultant will talk to the other and come to an agreed plan.

Sending you lots of best wishes

azaelea profile image
azaelea in reply to Wyebird

Thank you for your message. I am hoping to see the Haematologist on Friday when hopefully I will manage to get things a bit clearer. The Radio Consultant was supposed to be contacting the Haematology one. I shall see! Best wishes to you!

Each time I have had an op the consultants talk to each other re medication. The Haematologist has always said to continue, if anything has ever been amended it has been my anticoagulant not my Hydroxycarbamide, so speak to Haematologist and ask.

azaelea profile image
azaelea in reply to

Thank you for your message Yorkie1. I am hopefully seeing my Haematologist on Friday when I will discuss this with him and hope that in the meantime the Radiotherapy Consultant has been in touch with him. I understand the reason for stopping Hydroxy while undergoing 3 weeks of Radiotherapy is because Chemotherapy drugs cannot be taken with Radiotherapy which makes sense to me. I haven't asked about the other drugs I'm on but both departments have a list of them. Wish I wasn't on any, but they're keeping me here,aren't they!! Hoping you are keeping OK.

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