Kate!
Sounds like you’re having a great time and how brilliant are your blood results?! Wonderful news 
. We’re here until 10th May but not travelling far and wide this time. Just happy being with the grandchildren and my daughter. I’m not sure I can keep doing the 32 hours travel time so making the most of this visit!
So happy that you’re doing ok.
Take care,
Much love,
Sally xxxx
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Hi Sallyspix,
I hope that you are home safe and that you had a wonderful time with your daughter. Had my appointment yesterday. Blood count down several points, but platelets down to 474 - brilliant. It is such a balancing act between the two. My platelets are at the lowest since I was diagnosed so that’s brilliant
Love Kate xx
Great news about your results @KateS I feel a celebration is in order, enjoy and celebrate all the little wins, take lots of care and keep posting
Hello,
I am new here and am very happy to have found this site!
I also have Myelodysplastic syndrome (MDS)/Myeloproliferative neoplasms (MPN). I was originally diagnosed with Myelodysplastic syndrome (MDS) in 2021. In March of this year, my platelets were 1.2 million (I’m in the US). I was diagnosed with a JAK2 mutation through a bone marrow biopsy (my 2nd) at the end of March.
I am taking Hydroxyurea 500mg per day and last week my platelets were in the 300s.
Both of my Oncologists are very happy with my blood counts. One Oncologist told me that this condition is so rare that there is not a “cohort” of people large enough to determine the course that the disease will take.
I am not having a reaction to the Hydroxyurea and feel very well.
I am told I will need a Bone Marrow Transplant within the next 5 years and I am terrified by that. So I just take life on a daily basis and don’t look too far ahead!
A great big welcome to our forum @BonnieS and I hope you feel that it is supportive.
Just be aware that this is a UK site and clinicians can have different diagnostic and treatment protocols and use different drug regimes over in the UK and I say this because when I was diagnosed with Chronic lymphocytic leukaemia (CLL) 19 yrs ago, just before Christmas, my card crossed with a card from a friend in Los Angeles and she had also been diagnosed with Chronic lymphocytic leukaemia (CLL).
I have always been on ‘watch and wait’ (active monitoring) and she was treated straight away.
I am glad that you are feeling very well on your treatment and your oncologists are happy with your blood results.
You say that you are terrified at the thought of a bone marrow transplant, I think that the unknown is really scary.
However I love your philosophy of taking life on a daily basis and not looking too far ahead, easier said than done in my case!!!
I hope others will share their experiences for you.
Please keep posting as I look forward to hearing more about you.
Take lots of care of yourself.
Dear Erica,
Thank you so much for the warm welcome! Thanks for pointing out the differences in diagnoses and treatment protocols.
I find this site so informative and helpful. Also very supportive.
I appreciate you accepting me into the fold!
Bonnie
Oh @BonnieS you are part of our forum family now and I look forward to hearing more about you.
Look after yourself