MDS to AML

Recent diagnosis
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It’s been a while since I posted, I was diagnosed with Myelodysplastic syndrome (MDS) 12 months ago after having been in remission from Acute myeloid leukaemia (AML) for 10 years.

No matched donor was found and my Myelodysplastic syndrome (MDS) progressed to Acute myeloid leukaemia (AML), mutation IDH1. The treatment recommended is a targeted one, azacitidine and Ivosidenib.

I have just finished my first cycle of azacitidine, Ivosidenib is taken every day.

Has anyone else been on this targeted treatment?

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I know this is quite a new targeted treatment but was hoping someone else might be going down this route too.

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Hello @Sarah1

Thank you so much for posting and I am so sorry to hear that your Myelodysplastic syndrome (Myelodysplastic syndrome (MDS)) has progressed to Acute myeloid leukaemia (Acute myeloid leukaemia (AML)). May I ask how you are coping with the progression and of course the treatment?

We announced the approval of Ivosidenib here Blood cancer treatment for a form of acute myeloid leukaemia approved for use on NHS | Blood Cancer UK in May 2024, as you mentioned it is a relatively new treatment and targeted to those with a IDH1 mutation. The NICE approval is here 1 Recommendations | Ivosidenib with azacitidine for untreated acute myeloid leukaemia with an IDH1 R132 mutation | Guidance | NICE which shows the recommendations/eligibility. NICE approval ensures that the treatment has been proven to be effective for those who are eligible.

May I ask whether the team are still searching for a stem cell donor for you whilst you receive the Azacitidine and Ivosidenib?

I do hope you get to hear from others who have received the treatment and that you are tolerating it well? This must be a challenging time for you so do please call if you should need to talk things through: Blood cancer information and support by phone and email | Blood Cancer UK

Take care

Gemma

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Hi Gemma, yes I am tolerating

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Hi Gemma I am tolerating the treatment, most of the problems seems to be low phosphate and the tablets to counter this, I am now able to cope with 1/2 a tablet/day.

Due a bone marrow biopsy this week or the beginning of the following week so they can time the start of cycle 2.

I’m not sure about the donor search as very highly antibodies from my transfusions 10 years ago have made it impossible. I’m waiting to see if I still need to attend my appointment at the Christie in September for this.

I’m currently being looked after by Royal Stoke who have looked after me for 10 years and I am lucky to still be able to see the same consultant who diagnosed my Acute myeloid leukaemia (AML) 10 years ago.

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I am now just finishing cycle 3 of this targeted treatment.

My blood results are all in normal range and I feel better than I have in a long time.

I am due a bone marrow biopsy and am hoping that I continue to be in remission.

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