Mutations

[Siobhan Scully]

Good Evening All,
I have a question regarding mutations and their impact on the IPSS-M prognosis calculator.
My husband has three mutations , U2AF1 ,ASXL1 and ZRSR2. Originally we thought the third mutation was SRSF1 and used this information in the IP22-M calculator. When I went to use the IPSS-M calculator with the new correct mutation information the ZRSR2 mutation is not listed. Does this mean it does not have any impact on the score?
Many Thanks!
Siobhan

[Bonnie Shaffer]

Hi Siobhan,

That’s an interesting question. I also noted that TET2 was not included. My hematologist mentioned that they were working on which mutations to include in the calculator so maybe they found that these were not significant mutations? Not sure but very interested.

[Amy Clark]

Hi Siobhan,
We saw a new doctor this week at the same institution we have been at for the past 3 1/2 years and he told us that my husband’s mutations were controversial as to what they meant now. So apparently there is some debate going on up there. Sure is confusing. I think your suspicion about that particular mutation not being impactful for the overall prognosis is likely correct.

[Amy Clark]

Just found the new IPSS-M Risk Calculator and article about it. I just tried to copy/paste the links and it wouldn’t post. So the title of the article is
Molecular International Prognostic Scoring Systemfor Myelodysplastic Syndromes
in “NEJM Evidence” publication from 6/12/22. The link to the IPSS-M calculator is at the end of the article, before the references. Hope that helps.

[Amy Clark]

Ha! on me. I never go to the main page of the MDS Foundation b/c I have a link directly to the forum. But there the info is on the home page, as “big as Stuttgart,” as my husband says. Sorry to repeat what most of you likely already know. Mea culpa!

[Siobhan Scully]

Really appreciate your thoughts and help in finding the answer to this question!
Thank you so much!!

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