Looking for experiences with the progression of MDS

Following your post

Hollie

Brenda, I am also under the "Active surveiilance and wait" regimen. Will not take (or enven able to take) the stem cell transpalnt route due to age (soon 77). Due to low WBC, I avoid all large indoor gatherings as well as wear a mask when shoppoing etc. Due to low RBC, I am anemic, but still excercise and keep quite metally active, But mostly, working at enjoying life. I am fortuante to not have any headcahes or pain... Maybe you need to find out why you are getting headaches?
jean-pierre

Thank You for sharing Jean-Pierre! If you don’t mind me asking how long have you had MDS,and how was it discovered?
I am 49 and previously had Ovarian Cancer at 29.
I was very blessed not to have needed treatment except surgeries.
Brenda 😊

Hi Brenda,
I was diagnosed as having “presumptive” MDS in February 2011. I had no symptoms or blasts, but I was anemic, and all my other significant blood counts were low so I had a bone marrow biopsy which showed poor prognostic cytogenetics. Even so, I was put on watch and wait. Well, I watched and waited until September, 2022 when I was diagnosed with AML. What a shock!!! Since then I have been treated with a combination of Azacitidine and Venetoclax. This is not a potential cure like a transplant, but it is extending my life. Right now I have been off treatment for five months because after a serious bacterial infection in my finger, all my blood counts went up to what they were around the time I was diagnosed with MDS thirteen years ago. My hemoglobin is even in the normal range now. Go figure!!! My hematologist thinks I am in some kind of partial remission. I had 32 red blood cell transfusions and 1 platelet transfusion when I was being treated from September 2022 to early July 2023. I have now been completely transfusion independent and symptom free of AML for four months now. I walk a lot, see my family and friends, and try to live one day at a time when I am not dreading the results of my weekly bloodwork. I am 70 years old and have no co-morbidities, but both my oncologist and I consider transplant too risky at my age. Hope this helps.

Sorry, Brenda, I forgot to sign my long rambling comment. It is Anne-Marie.

Don’t be sorry!!! What a journey you have had. I’m glad you are living a life with friends and family time. I know it helps to have support! Thank you for sharing with me it’s very helpful and comforting.
My husband doesn’t engage in my conversations when I get worried about symptoms and he just says you’ll be fine and nothing will change. I appreciate the optimism but, I need to plan for the ugly possibilities and focus on being prepared. Just my personality. Sometimes it feels like I am crying wolf and I know how blessed I am. But I know the only real cure is a bone marrow transplant and that’s not guaranteed, if and or when it progresses.
So I am grateful to learn and listen to others with their journeys.
Again a huge Thank You
Brenda 😊

Hi Brenda,
I was very interested in your comments about your husband’s response to your MDS. Unfortunately I got pretty much the same response from my husband (who I since divorced and remarried) and my four “best friends” who just didn’t get it either. Most people don’t even know what MDS is, but everybody knows what Leukemia is!!! I had a great GP who figured out why I was so tired all the time, did extensive bloodwork, and referred me to a good hematologist who recommended that I watch and wait and get my bloodwork done every four months. In the beginning I wanted to know everything about MDS, and I was compliant about getting my bloodwork done. However, after a few years of no symptoms except for some fatigue, I got sloppy about my bloodwork. I still went, but sometimes I stretched it out to six or seven months. I just didn’t want to know!!! It was always in the back of my mind, but I really went into denial for quite a few years. So now I have AML, a slightly more compassionate husband, my daughter, and new real friends - not just fair weather ones. I still have the same GP and a new much better hematologist. Watch and wait is a good strategy in the beginning because treatment too early can cause more harm than good, but it is very important to keep all your bloodwork appointments. It is also important to know which kind of MDS you have because only about 30% transform into AML, and you don’t want to belong to that club!!! Also, it’s really important to know what, if any, cytogenetic abnormalities and DNA mutations you have. I know it’s hard, but just try to take it one day at a time.
Anne-Marie

Anne-Marie you are so very kind to have shared your experiences with me. I feel better knowing someone else can relate in all this unknowing . My BMB showed
Rearranged Clonal T cells and I am not sure what else to look for in the results. I have had this for several years and until August my Dr. said not to worry but “something is cooking “ and when it appears treatment will be needed.
He finally told me it was MDS.
So I’m new to the diagnosis and still new to all the information. I was getting bloodwork every 6 months and now it’s every 3. It’s very dizzying.
I am open to any and all advice, knowledge and suggestions!
Brenda 😊

Hi Brenda,
You need to ask your hematologist if the kind of MDS you have is likely to transform into AML. You also need to ask him/her if your BMB included next generation sequencing. This is important because it tells you what gene mutations you have, and there are some new targeted treatments for specific mutations. Hypomethylating agents such as Azacitidine which they also use to treat AML can sometimes slow down the progression of MDS to AML, but you are right. The only potential cure is a transplant which is a very scary and risky thing. Does your husband really understand the emotional impact this is all having on you? When I was diagnosed in 2011, there was still a dispute even in the medical community about whether or not MDS was really even cancer. I was told it was a “blood disorder.” So, uh, why was I being referred to a hematologist at the Cancer Treatment Centre for a bone marrow biopsy? Even now I have to explain to some people in my life that I didn’t just get blood cancer last year when I got diagnosed with AML. I’ve had blood cancer for 13 years!!! Sorry. Back to you. Where are you located? There are several MDS Centres of Excellence in the US and a few in Canada. Is your hematologist a specialist in MDS? If he/she isn’t, I would suggest that you ask for a second opinion from a hematologist at the closest Centre of Excellence to you. It will be easy to find on Google. I know how difficult it is to live with all the uncertainty, and I am now attending a support group for cancer patients which I find very helpful. I would suggest that you look into that too. Take care.
Anne-Marie

Brenda, I was dignosed a year ago. But it is probable that the MDS was present much earlier. But I had not had a normal blood test since 2017. A new doctor ordered one last Fall, and bingo, I was off to a hematologist, and the MDS diasgnostic.
Anne-Marie, may I ask you where are the MDS Centres of Excellence in Canada and in the US?

merci jean-pierre