Living with MDS (Myelodyplastic Syndromes)

It depends on a number of things on what comes next. In hindsight i may have been tired, but did not notice. I am a person who just keeps moving. I ask for a hematologist following my breast cancer treatments as my blood numbers were not increasing finishing treatment but slowly decreasing. At the City of Hope, I was provided a doctor who suggested a bone marrow biopsy. He too found the MDS. I had the 5q deletion and a TP53 mutation in addition to another mutation. I was given a watch and wait or bone marrow transplant. I might also add that my MDS was Low-Medium. Based on Statistics for how many progresses to leukemia, and the fact my genetic test also diagnosed BRCA2, I thought for a minute and send BMT please. That day i was activated on the Bone Marrow registry.
I have read on this sight how people get transfusions or start with low dose chemo. One experience i have for fatigue was during my chemo treatments for breast cancer. I walked through 13 rounds of chemo, worked from home and was living life. The 13th round was Adriamycin and that got me. I was telling my sister on the phone how tired i was that day and she said that is not tired, you are fatigued, and you need to call City of Hope's triage line. I got my fiend to drop me off and got into the emergency room. I thought they would check me over and send me home. Blood test, chest scan and vitals. The Doctor in charge came in after an hour or so and i asked him if i would be going home soon. He said NO, your blood numbers are extremely low, you are going into the hospital. We will take care of you. I was in their 4 days as i also had a fever i was not aware of at 103. The nurses needed to treat me and order a blood infusion. I was diagnosed with Pancytopenia.
Fatigue needs to be reported to the medical team. I am sure there are suggestions. I would ask in those 3-month visits, what would be the next step in treatment. I was 63 when I had my bone marrow transplant.

I was diagnosed with MDS last year. My fatigue level never improved. I also have shortness of breath. I am now on my 3rd round of chemo treatment ( 5 days a week-first week of every month) so far no change.

I was diagnosed with MDS with ring sideblasts in December 2024. I was on the mend from a very painful PMR condition in April 2024. Anemia and fatigue symptoms, along with the PMR upper body pain. Placed on prednisone, and then biologic (actemra) infusions. I tapered off of the prednisone successfully, and have not had PMR pains since the infusions began in July 2024. But my anemia has continued, with low hemoglobin (11.3 to 12.0) and RBC (35-36) counts. My oncologist ordered a bone marrow biopsy, and she found the MDS. I’m thankful she was persistent.

So we are now on a 3 month schedule for follow up visits, and if my hemoglobin drops to 10 she will recommend treatment. But meanwhile my fatigue is significant and affects my daily activities. Has anyone had success in improving their fatigue levels while living in the “wait and watch” phase of this disease?

I was recently diagnosed by a bmb on 12/26/24 but have had anemia, low hgb for years.
I had my 1st treatment of Reblozyl on Jan 3/2025. My hgb went from 10.4 up to 12.0 within a week. I was just checked yesterday & hgb has climbed up to 12.8! Highest it's ever been-ever! So that with only the 1 treatment! I go back every 3 weeks to check my blood counts. If the hgb drops to 11 or less I will get another Reblozyl treatment. So far, it really seems to be a miracle drug for anemia. The side effects I had from the one treatment was extreme fatigue & dizziness.

jschellhaas- Lots of great info has been shared by the beautiful mentors. Check with your dr. on why chemo, which chemo and what does he hope the chemo will accomplish. Did you have blasts or anything else noted in your BMB?

Hi @jschellhaas. Honestly, I don’t think anyone is ever ready for chemo. I’ve been there myself and you’re right, the very words spark a jolt of fear. While the side effects can be unpleasant while you’re in treatment, the chemo may rid your body of the cancerous cells and help you live a healthy life ahead.

You’ve recently been diagnosed with MDS. There are different sub types for this disease. Some of them have the ability to progress to a serious and aggressive form of leukemia, which can more difficult to treat.

I don’t know what type of MDS you have but if your hematologist oncologist is suggesting chemo, they may be trying to preempt this from happening.

I’m here for you as well as so many others of us who have had a blood cancer that needed to be treated with chemo. Together we’ll walk you through this uncertain rough spot in your life and help you get on with your future.
Why type of chemo did your doctor suggest? Is this an infusion or in the form of a daily pill?

Welcome, @jschellhaas. It is scary to get a new diagnosis. To help you connect others living well with MDS, I moved your questions to this existing discussion:

- Living with MDS (Myelodyplastic Syndromes)
https://connect.mayoclinic.org/discussion/living-with-mds/
Click the link to read previous posts about MDS and meet members like @katgob @momz @nbadry @rrivory @honeymae @nylechojnacki and many more.

@loribmt provided links to helpful articles about MDS in this comment: https://connect.mayoclinic.org/comment/925760/

What chemo did you doctor suggest? Did you discuss other options too?

I did have a bone marrow biopsy that confirmed my mds. My Hematologist suggested chemo (every day for 1 week each month) not sure if I'm ready for that yet. Thank you for your response.

jschellhaas.
I had MDS. Mu diagnosis last October 2023. The first thing my hematologist did was schedule me for a bone marrow biopsy. That confirmed the MDS. If you had a BMB I would hope your medical team has given you treatment options. They need to see in your blood if there are blasts or other changes that will in time cause more issues.

Go to the subject line above and enter MDS. There are a lot of us here. For me, I had breast cancer 2 years before with a genetic test done finding the BRCA2 mutation. I was given a few choices for my MDS. I had a TP53 mutation too. I did not have the symptoms you describe, yet. Watch and wait or a Bone Marrow Transplant. I thought just a bit of time as i absorbed what my Dr. had told me. At first i was thinking he was kidding. Maybe he got it wrong? I did not feel bad. I did though seek out a hematologist as my platelets and white cells were at the lower end of normal and kept going down. I was no longer in treatment for BC, so why did my blood not recover? That is what i thought of when my dr gave me the choices.
I looked at him and said i want to do the BMT. He said he would activate my name on the Bone Marrow Registry. Within 2 months i had 6 potential matches. One was eventually chosen as the best selection and on April 9th, I received the transplant.
In the end every one of us has a different body. Your blood and body will show where you are with the MDS.
On this site, you will find many stories. Some who have done watch and wait.
Put MDS above in the search and watch the stories that pop up.

Have been diagnosed with Mylodisplastic syndrome. How serious is this. Am very short of breath - any connection? What are treatment options?