[Amy Clark]

Hi Brett and Wife,
I am sorry you are going through all of this. It IS a ton of information to try and assimilate in a short period of time. Be kind to each other while you figure this “new normal” out. And after.

The main numbers on your regular blood labs to look at are the ANC (Absolute Neutrophil Count or Neut # on your list), the platelet count and the HGB (Hemoglobin on your list). On your bone marrow biopsy they look at the blast count as the key marker for progression of MDS. Different hospitals have different thresholds for transfusions of platelets and red blood cells. Ours is once you drop < or = to 12,500 platelets or a HGB – hemoglobin of < or = to 9.0. The ANC is considered neutropenia under 1.5 at the hospital where we are. That means your husband is at greater risk for infections as you know. His is quite low at .5 and they may put him on prophylactic antibiotics or antifungals or antivirals for his protection. Or they may not. It is up to the doctor and their protocols. The low ANC is why it is so important to watch for a fever; he has a very weak immune system available to fight against germs.

Hang in there. The most important thing you can do at this point is probably find a doctor you are confident about. The Centers for Excellence have been evaluated by someone with much more experience than I, and even though I liked our hematologist, the ones we are seeing know are much more knowledgeable at the CofE near us. Good luck and God bless you. Amy

[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.

[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]

Hi there! My husband shakes/ has chills at night when his Hgb. is dropping. It usually occurs when he needs a transfusion. Hope that helps. That may not be the case for you.
Amy

[Amy Clark]

I am so sorry that your mother passed away so soon after you found out what was going on with her. However, it sounds like being near to her in her final days was a comforting for all of you. I am glad you were able to be there for her during that time, but sorry that it was so unexpected. I will pray for peace for you and your family. I will also pray for your mom.

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