MDS High Risk

[Kathleen Till]

I was diagnosed with the above on 2nd April and getting my third chemo next Monday.

Preparing for a Bone Marrow transplant – anyone else had this or going through this.

I have the trisomy 8 chromosome.

Thanks

Kathy

[Kevin Dugan]

NO I have not, but will be thinking of you and praying all goes well. Best wishes, Kevin

[Tom Nelson]

4 year MDS del5q patient. Started with Revlimed, then switched to bi weekly Aranesp. HGB went from 10+ to now 8.2 maintenance with the help of weekly Granix. February BMB showed still del5q, but now also 8+ or 3 legged Chromosome 8, additional variant.. Assume this is what is meant by Trisomy 8. lifestyle the same as before, Work in spurts and naps. Doc thinks the 8+ is/has caused the Hgb drop. Trisomy 8 seems to be a newer variant.

[Kathleen Till]

Thank you. I thought HGB levels should be higher. Mine are 10 and it says low.

Kathy

[Belinda]

Hbg “normal” is minimum 12.2. Some labs have “normal” at 11.4. It just depends on the lab processing your blood test. So yes 10 is low, no matter what.

[Sue]

Hi!

In 2000 I was diagnosed with a Myeloproliferative Neoplasm called Essential Thrombocythemia, basically my platelets over proliferated. I knew their might come a day where my bone marrow would fail but I lasted longer than anyone expected. I was on Hydroxyurea for 13 years until my platelets stabilized. For five years I was treatment free until 2018. A routine blood test showed blasts. I was diagnosed with Low Risk MDS, watch and wait.

In Jan 2020, I sought a second opinion. A repeat marrow biopsy showed progression of disease with 10% blasts, ALIP 10%, del 5q, 44XX, -3, t(3:21), dr21 and NGS showing JAK V617F (41% VAF) and two TP53 mutations.

I was started on Vidaza and Venclexta and continued treatment for six months. On August 1, 2020, I entered the hospital and on August 6th, 2020 I had a transplant. I am now just a bit over one year post transplant with no sign of disease and zero genetic mutations.

[John Bradley]

Congratulations, that is great news.

[Sue]

Thanks, John!
I did really well for a year but as they weaned me off of the immunosuppressant meds, I got graft vs host disease so I am battling that right now.

[Sue]

Hope you are doing well, Kathy.
Let us know, only if you are up to it.
Sue

[Kathleen Till]

Sue,
Had no idea you had gone through all of this for many years.

Somehow I do not get notified when posts come up. My daughter told me you had been on.

Sent email today.

Hope you are keeping well.

Kathy

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