Changes that signal moving from watch and wait?

[Malissa Kirszenbaum]

First of all, greetings to everyone here and prayers and healthy vibes for all that are suffering with this horrible disease. It has been a while since my last post regarding my husband Leon who was officially diagnosed with low grade MDS back in 2019 (although they decided that he probably was about six years in already undiagnosed). He has been on watch wait since 2019 with no meds other than a few blood transfusions, and has been relatively stable with baseline lows on the RBC and ANC side of this disease. Up until about three months ago, his baseline stayed pretty much at 10.5 on the RBC side and 1.0 to 1.9 on the ANC side. His onco/hemo has now seen a gradual decline to an RBC of 9.2 and ANC of 1.3. They now would like to start Aranesp next week. My question is, is this an indicator that perhaps his disease is starting to move from the wait and watch column to something more active? I have tried to read some of the posts here and it seems that even though some needed to start with some meds, it did not necessarily mean that they were quickly “declining.” Thank you so much for any thoughts that may be helpful. We always knew that there might come a time where medications might be needed. I just was not sure what others experiences were in this regard. Best, Malissa

[jebs554]

Hello Melissa,

What is the MDS subtype of your husband?
Thank you!

James

[Malissa Kirszenbaum]

Hi James. Thank you for asking and sorry I did not include that info. Leon is RARS. Started with just RBC deficits but now his WBC (ANC)is following suit.

[jebs554]

Hello Ma’am Melissa!

Thank you for your answering my question. Please include me in your prayers Ma’am. By the way I’m from the Philippines.

God Bless you Ma’am and Sir Leon.

James

[Amy Clark]

Melissa,
I am sorry you and your husband are dealing with this disease and all the uncertainty it brings. The uncertainty is a particular cross for this disease. From all I can tell over the past several years of being on this forum and researching independently, moving from watch and wait to something more active is very individualized and, of course, related to the genetic mutations each person has and how they (the genetic mutations) interact with and against each other. Some mutations when put together act as a booster for the disease, some as a brake, slowing the roll. The doctor will usually order a bone marrow biopsy/aspiration when the patient’s disease looks to be changing to help decide the next course of action by looking for additional changes in the blood, chromosomes and mutations which may open up certain clinical trails, meds or treatment for the patient. Hope that helps. God bless you!

[Amy Clark]

I just re-read your post and saw that I didn’t answer your original question particular to your husband starting Aranesp. While I would assume that the doctor wouldn’t start your husband on a new med at this time without thinking there had been a change in his disease, especially given the gradual change in his blood levels, you will have to ask the doctor personally. It certainly seems that way to me (and you, I think), but I am not his doctor. Good luck!!

[Malissa Kirszenbaum]

Thanks Amy. You are correct. They called on Monday morning and Leon scheduled for a BMB early next week at JHU/Sidney Kimmel COE. They don’t want him to start the aranesp until after results. That was a very quick nose dive on the ANC side of things and a bit of a nose dive on the hemoglobin within a three week period. There are no obvious signs of infection. He is breathy and tired, which is certainly not out of the norm for him. it just seems like things are changing a little bit. I am hoping that the BMB is not going to show an increase in blasts.

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