Low Risk MDS and BMT

[Termara Campbell]

Hello James,
I have no idea what my CBC from March is. I tried logging into my health portal but I was unable to get in, so I’m going to have to call the office to find out what’s going on. Once I’m able to get in and if I can find out I’ll update this post. Does my CBC make a difference? Thank you so much for responding.

[Malissa Kirszenbaum]

Greetings. I read all of the commentary on this post with much interest. My husband is over the 10 year mark now and he too was low risk RA-RS with mainly a single lineage dealing with red blood cells in the beginning. About 5 to 6 years ago, we started seeing some periodic neutropenia as well, but nothing off of the charts. I actually put a post on a few days ago, asking the question of whether or not the initiation of taking Aranesp (we have been on watch & wait with occasional blood transfusions and infections here and there but relatively stable with his low numbers), would start a different journey for him and there would be no going back to his watch and wait, low baseline stability we had for several years. Now, we were just told that the red blood cell count is starting to change and it is progressively going down now and as of this morning (they wanted a whole new blood panel as a baseline before starting the Aranesp on Wednesday), his H & H is 9.3 and 27.5, respectively, but his ANC dived down to 0.8. I guess what I really wanna know is when this starts happening, has it been everyone’s experience (reading from the commentary above, It seems like I have my answer), but I will ask again anyway, a more challenging journey for my husband? I understand low risk really deals mostly with the percentage of it going into AML and that that is something we never want to see but the other things that people have to problem solve, low, hemoglobin, low neutrophil, low platelets, or the converse, can also cause great problems that can lead to a sad outcome as well. I guess I’m trying to get myself strong again too help him along what seems to be a more troubling path. While he was low stable, we took the advice of his oncologist at JHU and tried to live our life, not worrying and plugging into numbers so much. He got used to being breathy, tired, and sometimes we had moments of infection and a few blood transfusions along the way. We were just told this morning that his oncologist at HOPKINS wants a new bone marrow biopsy next week before starting any new medication. Has this been everyone’s experience? For those who are struggling my thoughts, prayers and well wishes to each of you. I myself just celebrated one year after having breast cancer. I am feeling good and feel very blessed to still be here and share this with you. I know that each day is so very precious and sometimes all we can do is celebrate that blessing one day at a time. I also know it is easier said than done, but all in all, that seems to be what Leon and I, together, try to focus on. Thank you for listening and any thoughts you might have. Best.

[jebs554]

Hello Tamara,

Your CBC will tell you if your MDS is progressing. BY the way what is the subtype of your MDS?

Thank you!

James

[jebs554]

Hi Melissa,

We will pray God will lead us in this journey.

James

[Termara Campbell]

What do you mean subtype? I just looked at the paperwork from my bone marrow biopsy 8 years ago and the only thing that I can find that has any type says Abnormal Female Karyotype. My T-Cells have reversed CD4:CD8 ratio of 0.3 and a mild relative increase in T-Cell large granular lymphocytes (CD3+CD56+). Their molecular testing for TCR gamma and beta showed a clonal T-Cell population.i had no idea what any of this meant back then and still have no clue.

[jebs554]

Hello Termara,

MDS subtype: Refractory Anemia, Refractory Anemia with Ring Sidedroblast, MDS-Single Lineage Dysplasia, MDS-Multi Lineage Dysplasia, Refractory Anemia-Excess blast.
By the way, do you have an anemia?

Tnx

[Termara Campbell]

Good morning James. This is what is listed in the paperwork. Moderate Macrocytic Anemia Mild Neutropenia.

[jebs554]

Hi Termara,

When was your last bone marrow biopsy?

[Termara Campbell]

I’ve only had the one which was 8 years ago. My new Oncologist says it’s not necessary because my condition doesn’t progress which I know isn’t accurate. She’s the only Hematologist/Oncologist here where I live.

[jebs554]

Hi Termara!

When was your last CBC?

[Termara Campbell]

I had blood work done last month. I was told that everything looked fine and that my hemoglobin was at 10.

[jebs554]

Hello Tamara!

Thank you for replying.
God Bless!

[Termara Campbell]

You’re welcome. God bless you as well!

[jebs554]

Hi Termara,

What is your current medication?

[Ashley Moncrief]

Hi Termara,

Just popping in to say that we have a list of MDS Centers of Excellence. If you are interested in a referral, please message me at amoncrief@mds-foundation.org. I would be happy to help.

Also, I’ve put a list of MDS subtypes below so you can ask your physician which group your disease falls into.

– MDS with low blasts and isolated 5q deletion (MDS-5q)
– MDS with low blasts and SF3B1 mutation (MDS-SF3B1)
– MDS with biallelic TP53 inactivation (MDS-biTP53)
– MDS with low blasts (MDS-LB)
– MDS, hypoplastic (MDS-h)
– MDS with increased blasts (MDS-IB)
– MDS with fibrosis (MDS-f)

Hope this helps!

Ashley

[Author]

Posts