Posted , 5 users are following.
Hi,
My partner and I werre at the Consultant yesterday re the results of the bone marrow biopsy. he now has Poycythemia ET! He has been put on Hydroxycarbamide and Allopurinol for the next 3 weeks and is also on the asprin. Can anyone give us some advise as I am desperately worried.
Helen
Helen
0 likes, 10 replies
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marie-jos6518 Helen...
Posted
My advice to you is not to worry. I have been diagnosed 18 months ago and never felt better. Pv is something you live with and with the right treatments, you partner will probably see some improvements in problems he has had for years. In my case, I used to have frequent migraines and itchy toes and all that is all gone.
As for what treatment is right for him, read about it and question your Dr. Some of them don’t know a lot about pv, see a specialist if you can. I am surprised he has been put on Hydrea right away, usually they will start with venesections for a while. As I said, ask questions.
Good luck
Marie
Helen... marie-jos6518
Posted
Thank you marie-Jos, this is all new to us and very frightening 😳
davidartist Helen...
Posted
Hi Helen
Don't worry too much. I have had it for about 5 years and in fact saw my consultant today for a regular appointment.,.
I have been on Hydrea (Hydroxycarbiamide for a few years. It does have side effects but they vary from person to person, although sometimes none at all. In my case I got red hands but stayed on Hydrea because I travelled alot. Now I don't travel so much we are reducing the Hydrea and having the occasional venesections.
It comes as a bit of a shock when you are diagnosed with it but I'm 71 and I feel fine. Just make sure you see a haematologist.
My GP put me on Allopurinol because my uric acid levels were high but my haematologist took me off them and said there was no need. It is a good idea to be on some sort of blood thinners because you are producing too many red blood cells.
Once you have accepted the condition and maybe done a little research, it shouldn't make any difference to you lives. There's always something that comes and bites you in the bum!
Kind regards
David
Helen... davidartist
Posted
justin23294 Helen...
Posted
I was also diagnosed with ET and jak2 mutating gene 3 years ago.My playlets were in the 700 range. I was put on Hydroxyurea 500mg 2 per day. Plus 81 mg of aspirin.My platlets are now normal .Below 400. I have no symptoms from the dug as some do. At this time is the only affordable drug available .I too was vary worried when I learned of this blood disorder .I did a lot of research and my haematologist assured me that you can live a normal life. At 82 hopefully I have a few years left. So;Don't be scared.
Helen... justin23294
Posted
peter98873 Helen...
Posted
ET is normally accompanied by a higher than normal platelet count. Hydroxycarbamide is a medication that can control the platelets and in normal circumstances should be no cause for concern. Aspirin will thin the blood and assist in the prevention of blood clotting which can be associated with ET, hence essential thrombocythemia. A spleen that does not fully function can be the cause of a high platelet count Your blood tests seem to have diagnosed your ET as needing some treatment. This will be supervised by your doctor (haematologist). Hydroxycarbamide is the usual early treatment for your disorder and seems to work well to control things. I would suspect that your ET is not considered a high risk, from your comments. There is no reason why you you should not live for many years to come. Allopurinol is prescribed generally to treat a diagnosis of gout which can be found with ET etc. Good luck. Release your worries.
Peter.
Helen... peter98873
Posted
Hi Peter and to all who have replied, I thank you all for your good advise.
The one thing that is really worrying me is the consultant said my partner's bone marrow was showing a slightly raised fibrosis, his hemoglobin is fine so does not need the vensections. He has no symptoms except itchy legs after having a shower. Can I ask if anyone was asked if they had relatives so that she could get info in case of stem cell replacment for later .
Kind regards Helen
peter98873 Helen...
Posted
If the blood marrow is slightly fibrous the correct treatment can control this. If it is allowed to become more fibrous then it might progress to Myelofibrosis which needs different treatment. With ET the platelet counts will rise but not necessarily above normal. This high count may be because of perhaps a poorly functioning spleen. Fibrous checks are maintained from a bone marrow biopsy. These can be low and not cause concern until they rise above a particular level. The risk associated with ET is more to do with the patients age. Over 60 years is the guideline for the main control whilst a low level of test results should indicate a more positive outlook and a superior expectation of life. Whatever the level, some form of treatment will be necessary. Stem-cell treatment is a very severe treatment and will not be used unless certain criteria is met. Hydroxycarbamide is a first treatment that will be considered and at a later stage, perhaps Ruxolitinib (Jakavi). Much depends on the outcome of the haematology tests. Stem cell treatment is considered for younger patients and generally excludes those over 60 years. It is not for the faint-hearted and is a long-term therapy with some risks. Hope that helps.
Peter.
Helen... peter98873
Posted