First Time MF Poster

[47Robert]

I am a 69 year old male. I was diagnosed with nonspecific myeloproliferative disorder in 2009.

Twelve months ago, following declining red blood cell counts and a bone marrow biopsy, diagnosis of myelofibrosis was made.

I initially started on hydroxyurea and prednisolone, but after four months Jakafi (Jakavi in Australia) became available on the pharmaceutical benefits scheme and I changed to that drug (20mg. twice daily) which I have been taking for eight months.

I now have no problems with enlarged spleen or liver, but my red cell count is going between 80 and 105. White cell count normally around 6 and platelets about 160. These last two figures dropped to 3 and 98 when I recently had a heavy cough and cold but soon bounced back.

I am in a pattern of fortnightly blood tests and four weekly transfusions of two units of blood.

My haematologist thinks that my anaemia will improve but that hasn’t happened yet.

Apart from feeling a bit weak when getting towards transfusion time my illness gives me no other problems and doesn’t stop me from part time work, golf, walking and cycling.

Wondering how this compares with other sufferers.

Are transplants still a possibility at my age? I have read vastly differing versions of risk and success.

I live on the east coast of Australia thus blood count figures are expressed a little differently to most.

[eire]

Hi fellow MF!!!! I'm 65 female had diagnosis of MF 7 years ago and have been on a clinical trial for 4 of those years. I was initially having lots of transfusions, weekly in the beginning and gradually decreasing to 6 weekly, this last time I went nearly 6 months so take hope!!!! I'm one of those who never knows if I need a trans so consequently have to go for regular blood tests just in case. Like you am going well and lead a very full and busy life. I think it takes time for our bodies to adjust to the drugs we take so drinking lots of water (no problem to you in Oz!!) Eating really well and exercise all help so much. Can't help with the transplant side as I made the decision when I was diagnosed that I wouldn't go down that road. There are people on this site who have had transplants who I'm sure can give you good advice. Good luck.

[socrates_8]

Hey 47Robert...

I am also from the east coast (Sydney).

You sound quite an amazing character, if you will pardon my saying so.

I was only recently diagnosed PET (prefibrotic) MF, in May 2016.

Thus far, where MF is concerned, I believe that Chris (aka Jedireject) might possibly be the best person to direct your questions to concerning MF.

In my own journey, I suffered a TIA (minor stroke) in late August 2015, but only learned of my MPN due to a standard medical test prior to being posted to a position in SE Asia (two days prior to leaving...).

Retrospective hindsight since diagnosis, might indicate that I have actually had this complaint for a great many years...

I commenced as high risk ET, on HU 500mg pd, and low dose Aspirin and Coversyl for high blood pressure. My platelets were initially recorded at 1700 and then they fell to 1384 during my BMB, which also revealed moderate to heavy scarring of my bone marrow (grade2 level of reticulin).

HU was then increased to 1000mg pd, but I was reacting poorly to it and asked for an alternative.

I was then placed on Interferon injections every two days, and while my platelets have continued to fall, they were still at 694 on last count.

I still suffer from fatigue, nausea, aching bone and joints pains, but now I also having a terrible case of Pruritus.

I have of course asked about Ruxolitinib on the last blood test round and my specialist said she was happy to reschedule another BMB to see if there has been any adverse progression. However, my platelets are still quite high, and that situation is usually contrary to an MF diagnosis, and really I am not in any hurry to MF.

Hence, at the present, I am still trying to manage my condition. The stroke has also left me with some memory lapses, which I find very disturbing...

Hey Robert, you do sound an inspiration to me, 69 still working part-time and all that exercise...

I do hope to resemble your achievements into the not too distant...

Best wishes and do let me know if you would like to catch up some time, if you are based in or around Sydney...?

Steve

(Sydney)

[Mazcd Partner MPNVoice]

Hello Robert, welcome to our forum, glad to hear that you are staying active and able to work, and that you don't have too many problems with your MF. I am sure you will get some good advice from the lovely people in our group. Best wishes, Maz