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I live in Queensland Australia and 37 years old.. I need

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hi my name is***** live...
hi my name is***** live in Queensland Australia and 37 years old.. I need some help I was diagnosed with Polythycemia Rubra Vera jak 2 positive 3years ago ..I get very sick, tired , pain and unable to do anything ..even after treatment it only last a week and I am back to where I started from .I work in the film industry and have had to turn down many job offers as I can't leave the country and allergic to any blood thinning medication I am currently severely depressed because I can't have a life I can't go anywhere or do anything ..anyhow I spoke with my oncologist about a bone marrow transplant as ladies I know have the same thing as me as got a transplant and they live life happy it fixed when I tried to discuss this with my oncologist she said they wouldn't do it ..I am looking and needing a second opinion as I can't go on like this and I am not going to last much longer she also said I have no other options ..in your opinion would a bone marrow transplant help me so I can live because I can't take anymore ..could you please help me ..thankyou ..kind regards Jade
Submitted: 2 years ago.Category: Medical
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10/11/2015
Doctor: Dr. Muneeb Ali, Doctor replied 2 years ago
Dr. Muneeb Ali
Category: Medical
Satisfied Customers: 8,338
Experience: MBBS, MD, MCCM. Currently working in Critical Care Medicine with 10 year experience in Medicine
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Hi,

Im very sorry to hear about your condition. The thing is that in Polycythemia rubra Vera, a bone marrow transplant is not usually undertaken. The reason being that the risks associated with this usually outweight the benefits of transplant. Getting a transplant is not a small thing, it involves a lot of preparation as well as long term immunsuprressant therapy which in turn have a lot of side effects as well. In most texts and guidelines, there is no recommendation for patients to get a bone marrow transplant in this condition. There have a been a couple of studies back in 2007 which dealt with bone marrow transplants but they were on a small scale.

Secondly, in polycythemia you can undergo a transplant if it changes into myelofibrosis, then you would have to undergo this surgical procedure. It's possible that the ladies that you know have undergone transplantation once their polycythemia changed into myelofibrosis.

The reason your oncologist is probably advising against the transplant is that it has too many risks and the current guidelines do not recommend this treatment option. What the current guidleines do recommend is that you be started on any of the several newer medications which can help in controlling the symptoms more effectively. Usually hydroxyurea is prescribed initially which i believe you must have been started on. However if the patients do not respond adequately to this, you can be started on Ruxolitinib (Jakafi), a JAK1/JAK2 inhibitor, which was approved by the FDA in December 2014 for the treatment of patients with polycythemia vera. This along with interferons can be very useful in controlling your counts. Now mostly these treatments are started once your hematocrit and hemoglobin levels are down to a normal level and these drugs can help maintain those levels.

I would recommend that instead of the transplant you should ask your doctor about the above two drugs if they haven't been used yet. A transplant is not a good option at the moment. Here is some more information about this condition which lists all the available treatment option in a concise form.

https://www.lls.org/sites/default/files/file_assets/FS13_PolycythemiaVera_FactSheet_final5.1.15.pdf

I hope this answers your question but please if you have any other questions, feel free to ask them.

I hope I have been helpful and this answers your query. Please remember to assign a feedback rating so JA will compensate me for my time. You are free to ask follow-up questions thereafter at no charge although any bonuses would be appreciated. Please allow up to 24 hours for a follow-up response if I am signed off.

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Customer reply replied 2 years ago
Hi,
Thankyou for your response you have answered my question and see that transplant not the answer I am glad about that it was finding something else just so I can some sort of life . I will most definitely speak with oncologist about this if it going to help me so I can do things I want to try it .. Thankyou so much
Doctor: Dr. Muneeb Ali, Doctor replied 2 years ago

Youre more than welcome.

Please rate my answer so that i can credit for it as until you rate i do not get compensated for my time.

I hope I have been helpful and this answers your query. Please remember to assign a feedback rating so JA will compensate me for my time. You are free to ask follow-up questions thereafter at no charge although any bonuses would be appreciated. Please allow up to 24 hours for a follow-up response if I am signed off.

If, for some reason, you are not satisfied with the answer, I would appreciate knowing why so that I can try to clear up any misunderstanding that may have taken place and still earn a positive rating from you. Finally, you may request me in the future by beginning the question with "THIS IS FOR Dr. Muneeb Ali".

Thank you for using Just Answer.

Ask Your Own Medical Question
Doctor: Dr. Muneeb Ali, Doctor replied 2 years ago

Youre more than welcome.

Please rate my answer so that i can credit for it as until you rate i do not get compensated for my time.

I hope I have been helpful and this answers your query. Please remember to assign a feedback rating so JA will compensate me for my time. You are free to ask follow-up questions thereafter at no charge although any bonuses would be appreciated. Please allow up to 24 hours for a follow-up response if I am signed off.

If, for some reason, you are not satisfied with the answer, I would appreciate knowing why so that I can try to clear up any misunderstanding that may have taken place and still earn a positive rating from you. Finally, you may request me in the future by beginning the question with "THIS IS FOR Dr. Muneeb Ali".

Thank you for using Just Answer.

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