Mortality rate MDS RAEB II

[Tom Peers]

What is the survivability or mortality percentage rate of people with MDS RAEB II at 5 years AFTER stem cell transplant?
Thanks.

[rar]

Survival statistics for MDS
The following survival statistics are based on the revised International Prognostic Scoring System (IPSS-R) risk groups. It’s important to note that this system is based largely on people who were diagnosed many years ago and who did not get treatments such as chemotherapy for their MDS.

IPSS-R risk group Median survival
Very low 8.8 years
Low 5.3 years
Intermediate 3 years
High 1.6 years
Very high 0.8 years

I have been told the chance of surviving 3 years with very high risk MDS is 4%. These are only averages. I survived very high risk mds 4 years so far. Don’t give up.

Ray

[Tom Peers]

Yeah, that calculator doesn’t take into account a stem cell transplant, so my Dr. told me to not pay too much attention to it. It’s very hard to get a accurate statistic on this, one that includes a stem cell transplant.

[Amy Clark]

Hi Tom,
I couldn’t find info for 5 years after a BMT, but the site below gives average survival rates (Survival Probablility Rates) for MDS RAEB (does NOT separate into EBI or EBII) at 100 days, 1 year and 3 years out.

For instance, my 52 yr old husband (RAEB (I)) would be looking at 83%, 57%, and 40% (for the three time frames mentioned above) with an unrelated donor match. The site is a treasure trove of statistics and you can break down the variables by transplant center, disease, age, gender, race, type of match etc.

Here is the general page:
https://bloodcell.transplant.hrsa.gov/research/transplant_data/us_tx_data/survival_data/survival.aspx

Here is the specifics page I pulled the above stats from for our situation:
https://bloodcell.transplant.hrsa.gov/research/transplant_data/us_tx_data/survival_data/survival.aspx

I hope that helps.

I am praying for you and your struggle. It is a very difficult decision with many factors, obviously, that are different for everyone. For us (my husband has the aggressive ASXL1 mutation and RAEBI) we struggle with the BMT process itself and outcomes, yes, but also with the time spent away from our six children, one of whom has special needs, (ages 10-22) when they may need us the most as they struggle with the real possibility or actual event of his death while away from home. And that is if we can garner the long term support to care for the children and his 88 yr old father who lives with us and is ill. We seriously wonder how we can choose that option (BMT) when “known” time with respective Dads (both Dad and Grandpa) and children now is so precious, maybe too precious to gamble with.

As a wife, mother and daughter-in-law I can only pray that 1) We all stay close to God and 2) That we make good practical decisions. I will pray the same for you. God bless you, Tom.

[Amy Clark]

I forgot to mention that MD Anderson is not recommending the BMT yet, as the onc wants to try Dacogen (not a good success rate with ASXL1, but the risks for harm are lower than what they are comfortable with with a BMT) but we have been through all of the initial info and bloodwork “just in case.” The onc said he hopes we never have to look at a BMT b/c the risks are so high. That is a different kind of hope, huh?! But, I think when we hit blasts in the mid-teens they will hold out a BMT as our only option. That last statement is researched conjecture on my part.

The onc was straightforward also when we asked about side effects after a BMT and their rates. We were extremely appreciative of his candor as I could not find statistics on those the way I could on the above.
God bless you.

[Tom Peers]

Thanks for the info. A week from today I have an appointment with my BMT doctor at Mass General (Boston). I will ask for a more definitive mortality rate, although they’re always reluctant to say. I’ll explore the link you posted.

I am and do stay close to God, and either way (cure or heaven), I don’t have any concerns or worries. Grateful for the God connection through Jesus Christ.

Thanks!

Tom Peers

[Richard Rockwell]

1 of my doctors says their survival rate for just the procedure is 45%. I believe that’s 3 years after. That was 2 years ago. I chose Chemo (Dacogen) over transplant it worked for about 2 years but now has failed.

I have an appointment with another hospital next week about BMT this hospital is marked as MDS center of excellence. I will ask them what their survival rate is. I’m hoping its higher than 45%.

[Tom Peers]

Amy – The stats mentioned in the link for survivabiliy we’re done with 161 people. That’s a very low sample size. I am amazed at the study didn’t include thousands.

[Author]

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