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New Dx/ NC

This topic has 2 replies, 3 voices, and was last updated 2 months, 4 weeks ago by Mar.

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July 15, 2024 at 8:06 pm #67654

Bertha Taylor-Miller
Participant

Good evening,
I am newly dx’d and I am 62 yo. I go to Duke for a second opinion on July 31st. I have had a BMB but I do not see the Karyotype. I finally found the D5q + but I am not even sure what all that means. My Hem/onco MD said I had low MDS and wanted to start me on Aranesp injections but i have not heard anything back from him. That is why I reached out to Duke for a 2nd opinion. My hgb is 9.4. Some days I can play golf and some days I can hardly get home from work. I am at loss because I am a NP with out a plan of care. I do not even know which way to turn. I have even reached out to explore homeopathic /alt medicine to see if I can change my diet and take supplements to make my bone marrow happy again. Any suggestions/support or guidance is much appreciated. I love to know the first question I need to find out from Duke, other than do I have MDS.

Thank you all so much for your time and support

July 16, 2024 at 7:55 am #67657

Tay
Participant

Hello Bertha. I know this is all overwhelming, hang in there. Aranesp is the first line treatment, it makes sense (if you have MDS) that you would start treatment with Aranesp. Our situation is a little different, my husband did not respond to Aranesp, and needed to start Luscpatercept. I would say find the right doctor for you. We had 3-4 consultations before we decided on a place we would work with a hematologist. I applaud you for considering homeopathic approach as well. Please keep us in the loop on this, we are considering as well. Have a great day!

July 16, 2024 at 10:30 am #67659

Mar
Participant

Bertha, hi. I know this is confusing. Such a rare and strange disease. I was watch and wait until my Hg dropped to 8.7. I started luspatercept. I’ve had three treatments, Hg up to 11. I have a blood draw 7 days before scheduled shot to see if I get the shot. If Hg goes above 11.5, I have to stop since blood clots are possible. In the meantime, my breathing is better, but I remain dizzy, lightheaded at times. Fatigue is awful.
My suggestion to you is get a team behind you. If you are near a Center of Excellence, go there. I have a doctor who is MDS specialist. Trust is the key. We are all on this journey, hang in there. Day by day.
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