I was diagnosed with blood cancer 3 years ago and started on Hydroxycarbamide medication which controlled my blood levels well up to 10 months ago. Following a normal monthly check with my haematology doctor, it was noted my platelets were rapidly increasing as was my white blood cell count however my red blood cell and Hb were dropping very low and I was becoming severely anemic .
My health in general was starting to suffer as it became more and more difficult for me to walk any distance and have any energy to do the most simple of tasks. I was slowly losing weight and although not depressed was finding the every day tasks were becoming major obstacles. The support of an understanding wife was a major blessing.
A bone marrow biopsy was arranged before Christmas, and it was in the new year, a month ago that the extent of my cancer became evident.
I have the rare blood cancer myelodysplastic syndrome/myeloproliferative neoplasm overlap syndrome. The JAK 2 mutation also has SRSF2 and ASXL1.
Although not curable, the cancer is controllable and this week rather than blood transfusions I start hormone injections on a regular basis.
Fortunately at present there is no evidence of acute myeloid leukemia.
Thanks to everyone on this forum as we all share a common denominator and can share our experiences.
@Mr257tel I am glad that your blood cancer is controllable and I hope you feel better on the hormone injections.
Please do let us know how you get on and it sounds as if your wife really is a major blessing, what a team.
Look after yourselves
Hi Erica, I had my first injection 500mg of Aranesp two weeks ago, and my second is due next week. No initial effects in or on my body from the first one, but have an appointment with tge specialist tge week after my second injection.
It will be interesting to see if my platelet count has reduced at all 750, last count, and if my lack of iron has improved.
The Hydroxy I stopped last October, and will not be going back on them at anytime.
The self administration of the drug is not a problem, and anyone having to go down this road should have no fear even if like I probably will, they have to go to weekly injections.
Thanjs for all yoir support,
Tel
Hi Mr 257tel,
I was diagnosed with Myelodysplastic syndrome (MDS)/MPN overlap at the end of 2020. The MPN is ET JAK 2. At the end of 2021, my platelet count was over 1000. I have been on hydroxy 5 days a week, now reduced to 4 weekly and my platelets are now 540. I have weekly, self administered injections of Arenesp and my blood count is creeping upwards. I have recently been feeling better. I had pneumonia last year, and now have a damaged heart due to oxygen starvation. This limits my mobility, but as I am 79 it’s not surprising!. Keep in touch and let us know how you get on. Best wishes Kate
Hi Kate
Very interesting as my specialist took me off hydroxy for good. I had been in tgem for three years until my cancer developed into Myelodysplastic syndrome (MDS) with MDN overlap and Jak 2.
I am very aneamic due to the hydroxy they believe, and wait to see how and if the injections make any difference.
At 78 years, I find this very frustrating. No pain, just no energy and as I have COPD as well breathing at times is difficult if I do anything slightly strenuous.
Thanks for being in touch, and please keep me posted on your progress,
Best wishes,
Terry
Hi Terry, I had an appointment with my haematologist last week. Blood count has shot up - very good news, platelets also up, so hydroxy back up to 5 weekly. Feeling good because of the blood count, I thought that I could get back to normal life, but I guess that I overdid things and came back to earth with a bump… I was utterly wiped out. I am now staying with my daughter and son in law for a while and will try to be sensible and take things more slowly.
I hope that the Aranesp is working for you. I am on Aranesp 300 every week and it is working really well for me… Best wishes, Kate
Hi @KateS I think a celebration is in order after your blood test results but please do not ordo it.
I cannot talk as every time I feel better I overdo it as well, it is quicker to overdo it than to get my oomph back again I can tell you.
Enjoy your break with your daughter and son in law.
Be kind to yourself