Living with MDS (Myelodyplastic Syndromes)

Hello. I was diagnosed with MDS (iso 5q deletion) 3 1/2 years years ago at age 50, and my blood results were a bit off for 3 years before that. I'm also on "watch and wait". Currently I'm moderately anemic and mildly neutropenic, but haven't needed treatment,and live a pretty "normal" lifestyle. I just get tired. The haematologist is not really able to give timeframes, but if my haemoglobin drops below about 80 she has said I'll be given blood transfusions as needed and started on lenolidamide to stabilise red cell count. I'll need an allogeneic SC transplant down the track. I understand that a number of different factors play into how quickly MDS progresses, and individuals are also different. Initially I was very anxious, but I've learned a lot about living one day at a time and being very thankful for each day. Any long term planning is quite difficult and seems a bit futile. Wishing you all the best.

Usually follow up every 6 months to one year

Hi Lori. Well I was supposed to start my treatment this week. When I saw my oncologist last Thursday she said I am thinking of delaying your treatment. Your blood counts are good. I know two other hospitals recommended treatment but I am looking at you and you look good. So what do you want to do. I said I am trusting your decision to delay it. She is on vacation for 3 weeks but her counterpart will se me in 2 weeks and I will do a blood test. It is all set up for me to start but it is on hold.
I got 6 bites on the back of my neck. I went to my pharmacist and he said they are bites. He said if you get fever or don’t scratch and I put after bite on them. I am also taking loratadine because the itching came back. Anyway what go you think about the postponement.

Hi Jacklyn, Oh, I understand now! I think you’re getting Venectoclax and Vidaza! They weren’t options when I had treatment 6 years ago! Your doctor is right, those two drugs are much different than what you had when you were being treated for breast cancer years ago. V & V are less intensive and much better tolerated.

I’m, sorry that I didn’t realize V&V are now referred to as 7+3 as well. Back when I had my treatment 7+3 was cytarabine and idarubicine and it was a week as an inpatient.

This will be a much different for you than with your earlier treatments for BC. The side effects shouldn’t be so dramatic. I hope that you’ll begin feeling some positive improvements after you start treatment. I felt so horrible before my diagnosis that when I began chemo, within 2 days I was starting to feel better. My chronic fever of 102 that I had for several weeks finally broke too.
As you’ve read in the forum with other members taking these meds, this new regimen for AML used in we older patients, has been a God-send where otherwise treatments were harsh and not tolerated well.
I’m can certainly understand the anxiety of all of this! Do you have family or friends nearby to talk to and help out if you need them?

I am a 76 year old male who is now living with Myelodysplastic syndrome, ringed sidero blasts, multilineage dysplasia (MDS-RS-MLD). Lot's of words...
Although at this point, I am classified as “low risk, but the consequences are that I am anemic as well as immunocompromised.
Currently, I am monitored through monthly blood tests by an excellent hands-on hematologist.
Yet, having been very healthy and quite active all of my life, I am finding this to be quite difficult to live with , and to “wait”. Am told that best treatment is stem cell transplant, but due to my age and beeing immunocompromised, risk of infection makes transpant unfeasable.
Same with blood transfusion, i.e. too risky.
If no infection, I can last for a number of years. But over the last year, I have had three events where infections occured, and required antibiotics.
Thus all is well for me, if I can escape serious infections.
Need to take naps, which I find embarassing. 🙂
I realize that all of us seem to be living with subtle differences within the MDS family, but would there be any suggestions as to what I might be able to do to possibly modify the current situation?
I am ready to go on living with how I stand, but am getting preassure from family to get a second opinion.

Hi Jacklyn, Oh, I understand now! I think you’re getting Venectoclax and Vidaza! They weren’t options when I had treatment 6 years ago! Your doctor is right, those two drugs are much different than what you had when you were being treated for breast cancer years ago. V & V are less intensive and much better tolerated.

I’m, sorry that I didn’t realize V&V are now referred to as 7+3 as well. Back when I had my treatment 7+3 was cytarabine and idarubicine and it was a week as an inpatient.

This will be a much different for you than with your earlier treatments for BC. The side effects shouldn’t be so dramatic. I hope that you’ll begin feeling some positive improvements after you start treatment. I felt so horrible before my diagnosis that when I began chemo, within 2 days I was starting to feel better. My chronic fever of 102 that I had for several weeks finally broke too.
As you’ve read in the forum with other members taking these meds, this new regimen for AML used in we older patients, has been a God-send where otherwise treatments were harsh and not tolerated well.
I’m can certainly understand the anxiety of all of this! Do you have family or friends nearby to talk to and help out if you need them?

You’re absolutely right about having to self-advocate. No one knows your body better than you do and when you sense something isn’t right, keep pushing until you find the answers. The self diagnosing…well, I think we’ve all been there. At least it gives us something to do between appointments. 😁

Having a 2nd opinion can be useful in confirming a diagnosis. It may also help you and your husband feel more confident with your current doctor and treatment plan, or point you into another direction. It sounds like you have a good doctor who’s willing to reach out to colleague for his opinion. I’ve always appreciated that collaborative approach that my doctors have taken for a consensus of opinions.

Please me know what you find out. How often do you have labs for follow-up?

Welcome to Connect @afieldcrow…Alison. I love crows so I can’t help but admire your @name! Just now reading a book called The Comfort of Crows; A Backyard Year by Margaret Renkl. ☺️

I’m sorry to hear that you’re not feeling on top of the world right now and see that you’re newly diagnosed with MDS. That’s a blood condition that can affect production of one or more of the blood cell types. You mentioned having low platelets but your neutrophils (WBC) are also low. How are your red blood counts?
Has your doctor talked to you about possible treatments?

Thanks! Yes my hematologist told me that the Single Lineage Dysplasia is mainly from my platelets. But I have never had an issue with my platelets! I’ve always had terrible low WBC results. My RBC are thankfully normal. I’m not complaining. I’m grateful I’m considered low risk. I am concerned. I diagnosed myself with MSD probably over a year ago! My friends told me I’m not supposed to do that but you do have to self-advocate! My hematologist is going to discuss my case with his Dr friend at UVA and is going to get back to me. In the meantime we’ll just keep an eye on my labs. My husband wants me to go to UVA for a second opinion.