Low WBC, Low Platelets, Low RBC, Large cells - is it always Leukemia?

Good morning! I had an autologous transplant, so I went through the collection process. The actual infusion of my stem cells went well, but recovery does take a while and I'm still working on getting my strength back. Patience is a virtue for sure.

I was 2 months shy of my 70th birthday when i received my stem cell infusion. The conditioning regimen with heavy duty chemo drugs occurred over 5 days. The 6th day was my infusion day. The side effects of the last chemo drug (Melphalan) were quite arduous for me (Melphalan was administered the day before my infusion). Side effects from the Melphalan persisted, even after I was released from the hospital & it does take weeks to get your energy back. Everyone is different. I received an autologous transplant, which supposedly has less side effects than a donor transplant (allogeneic).

I had some large wbc's and the specialists say they r related to multiple myeloma. However I do not have MM yet, I am diagnosed with MGUS

I just turned 61 in July. My hemotologist gave me the diagnosis of low risk MDS last Wednesday on the phone. He said he did not have all the bone marrow test results back yet. I still have my appointment in his office for Aug 11. All he said was that the treatment for now is to not do anything.

I am very concerned of two things: (1) how susceptible am I to infections with my current numbers. What can I do and not do. (2) I hadn't had a blood test in 6 years (with work and taking care of my dad with dementia) waiting till I retired last January to take care of myself. I worry how long have I had MDS, how long into the timeline am I already.

Is it possible to have low risk MDS and not have it progress to AML for 10-15 years?

It's hard to know whether you had MDS for a while with the gap in blood tests, but it won't help to be concerned about the possibility and does not change where you are now. My neutrophils and WBC are low as well. My Oncologist prescribed low dosage antiviral and antibiotics which I take daily. Plan to ask your Dr how at risk you are and whether you need maintenance doses of anti-virals and antibiotics. Is your Dr also an Oncologist? Plan to discuss a Stem Cell Transplant also. Take a list of questions to your meeting with the Dr. Take someone with you if you can so they can help with questions or help remember questions. You have an huge advantage since you are 61 The cutoff age for many providers is 75. You have plenty of time to decide your path. Yes "watch and wait" is normal when in the early stages of the disease. I look forward to hearing how the meeting with your Dr goes.

I will ask about the low dosage of antiviral and antibiotics. My WBC is 1.5 and ANC is .7. May I ask what yours currently are, and what you can and cannot do in public?

I know I am asking alot of questions, but I don't trust the internet for some of the answers. I've heard that in some cases that low risk MDS does not progress into AML. That seems like a good thing. However, I read that the average life span for someone with low risk MDS is about 3-5 years with low WBC and low Neutrophils, because I will probably die of Pneumonia or some other infection. This is confusing me. Can anyone explain if it's possible to live 10 years with low risk MDS affecting the white blood cells?

I don't mind your questions. My WBC are currently 2.3 and Neut .50. I have curtailed gatherings with groups of many people. I watch church from home. I have groceries delivered (truth is I never liked going to the store). I still go to family gatherings. I don't believe most masks work, but if I travel by plane again, I will wear a level 4 mask at the airport. Yes, there are plenty of studies out there about MDS, and yes we can die from infections because we are at higher risk due to our immune system. Approximately 30% of the MDS population will develop AML with the "low risk" community less likely to develop the disease. There is no cure for MDS. AML can be put into remission. At some point, you can make a decision about a Stem Cell Transplant; you can live an MDS free life with a donor's bone marrow. There are treatments that enable people to live 10 years or more with MDS. I was on Revlimid and responding well. I told my family I was on the 10 year plan. One of my Oncologists told me he'd seen people live 10+ years on Revlimid. Monday you will know what type of MDS you have. Treatments for MDS vary by type. Noone knows how long they will live. I am trying to be the best me I can be with whatever time I have left.

I hear such wonderful success stories of those who had Bone Marrow Transplants and are living close to normal again. It's so wonderful to hear. Does anyone know of the percentage of those who don't make it through the transplant? Or is medicine today, that much better than it was just a few years ago?

You will feel better knowing your diagnosis exactly - speculation can wear on us. I know for me that is true even after a definitive diagnosis. I asked my Hem/Onc how “long” I have already knowing what I found on Dr.Google statistically gave me 2 years (I am 77 and have AML).
He reminded me that statistics are rarely current. We are all individuals. With the tremendous strides that research is making in AML we have more opportunities than ever before with the drugs they have developed even in the past few years. Venclextca being one. I was diagnosed in March of 2024. I had an MRD (measurable residual disease) blood test this July and it showed I am in deep remission. They didn’t detect any of my FLT3 or NPM1 mutations! My MD gave me the option of discontinuing treatment or continuing with Dacogen (1 day) and Venclexta (2 days) every 5-6 weeks. Since FLT3 mutation can be tricky to detect I am playing it safe and staying with treatment as well as weekly blood draws as although I am in remission my numbers continue to be below normal. I have posted previously that although I was a candidate for Bone Marrow Transplant (the team found 5 matches) I elected not to go that route. The quarantine time (100 days) was problematic for me as I did not have the necessary support. Wishing you guidance as you travel through and learn your diagnosis. The best place to start your future!