Living with MDS (Myelodyplastic Syndromes)

I’m 71 & was diagnosed with MDS in March. I wasn’t given the option of wait & watch. But your MDS is probably a lower intensity than mine is.
It’s such a fine line between what to do or not do.
In my opinion, at this point in our lives (being in our 70’s), I want to feel the best I can every day going forward. I had 4 rounds of Dacogen & I felt better after it. I will have a stem cell transplant next week.
What treatment do your drs have in mind for you?

Hi @lmkmom, I want to make sure you’ve seen the answers to this post intended for @katgob. She wrote back in this reply: https://connect.mayoclinic.org/comment/1369125/

And I wrote a reply as well. Here is that link https://connect.mayoclinic.org/comment/1368897/

I know you have a lot of questions…we have a lot of answers. ☺️

To all, Lori is the best at describing all that will occur. My oh my. I know i started my testing in March once a date was chosen. They had to confirm with the donor that he would be available. I was weirded out by the word fresh. My donor cells were coming from Europe, how is that fresh. Well, it modern times, medical transport is magic.
I found all the testing before interesting as before 61 years old, i had never had children, been hospitalized or had surgery. By my BMT, i had already had breast cancer with surgery a couple hospitalizations and time being treated by surgeons and nurses committed to their patients.
By the time i got to the Hematology team in September of 2023, I trusted what they planned. A BMB to see my blood at work. I had been a platelet donor at the Red Cross for 25 years and i never thought much of my marrow until my BMB came back with low, low platelet production and white and red cells. Oh my, trouble was brewing from my genetics outcomes and my prior treatments.
Skilled techs took me through each test that would prove my fitness to complete the transplant. Inside i thought for sure i was out of shape, but besides being 63, i was right there where i needed to be. Healthy.
Appointments were made and i had my five days of doses of the conditioning chemo and for those i went home each night with little effects except some tiredness. On the 6th day I checked into the hospital. At COH, you are on floor 6 for 30 days or less if all goes well. I went in with trust and did not think about nor ask questions on what to expect on floor 6. So, what i found is the floor has filtered air. No open windows. Oh my, when i was released after i think 25 days the fresh LA air was amazing!!!!
You get in our room and the transplant team meets with you. A little bit from each on the schedule and what to expect. Looking back today, I had a day nurse and a night nurse and they were my connections to my recovery. They would talk daily about my blood numbers and what to expect as the days progress. Lori said it, the chemo starts soon, Melphalan is the chemo that clears your marrow out. Also, your hair. I had the "Positive Image" center come up to my room and cut my hair. It had grown back to my shoulders from my breast cancer and this time it was not so hard to loose it. I do not like a bald head and i had cute hats i wore. Also as she said the first two weeks i was soooooooooooooooooooo tired. They are giving you nausea meds and more in your iv's. I had two boxes stacked on what i affectionately called my sister pole that went everywhere with me. Hooked up for vitals and IV'S all day. Shower with my sister pole. Daily the aid wrapped my air for my shower. In the hospital on floor 6, every day 5 times aday i used the mouth rinse. Easy as all the fluids inthe IV and my own water drinking had me heading to the potty all day.
Along with the fatigue i had nausea that was not going away at 2weeks. Yikes. The Zofran and Compazine mix was not working. At a drs visit that was done every day around 8am for the team to assess and give feedback i started throwing up. That day they realized i had not eaten in nearly 3 days, so i got emend. a 72 hour nausea drug that by God worked. I then got to eat the delicious food from the room service. OMG.
One thing i must say is they do a urine catch for 24 hours as preconditioning. I did not know the importance. I worked that day and found it odd to carry my pitcher from the office fridge to the restroom. I filled the container little for the next day. No. That was not good. What i did not hear the DR say was that i would need a catheter inserted for a few days. What? Once in it was ok, but not anything I would want again. Putting it in. I had one nurse who kind of new and another who may not have done it but after a number of tries i said please no. Get another nurse. They got the head nurse who told me what she was doing and inserted it in minutes. OMG. Literally the most uncomfortable procedure by the two nurses was my worst experience on floor 6.
None of us will have the same experience. Our bodies are different. I was happy to be confined to Floor 6, because the mundane daily routine was brightened by the funky TV programs i watched that i have never watched again. I would order items from the food list that i seldom eat. No food restrictions was great. My brother would l come visit and take my laundry. Once my white cells were at a certain level i could go out and join in the daily activity. Bingo in the rooms for those who could not leave. Encourage to walk the floor six all the way around. I meta number of patients i would chat with. Like her, how are you doing, what do you have?
I walked some every day. I honestly tried to do everything they asked me to do. I noted a number of patients who barely got out of their beds.
All of this is different if you are at Mayo or another place that has you stay close to the hospital to return daily for vitals and a check up. I did not have a caregiver, so that would not have worked. After release from the hospital i stayed at my friends and for 30 days i went twice a week for checkups that moved to once a week after 60 days.
Today it is every 6 weeks. That could change to 2 or 3 months soon. As long as my blood numbers are stable and my scans stay steady.
It was so worth it. Time passes and little by little dr visits end and time moves forward.

So you have a long time to let the anxiety build! That’s annoying, isn’t it? You’d like to get some answers.
Well, in the meaning, many of us have been through the waiting game and find diversion works best to keep the stress level down.
What type of activities do you enjoy to keep your focus of health issues?

Not yet, I will see her in September to discuss.

Hi Lesley, Welcome to Connect. I’m glad you joined into the conversation. The reply that you read was a pretty good overview of MDS with some helpful information to get you started. I know a new diagnosis can leave you feeling clipped off at the knees, so being able to talk with someone who’s going through the same crazy times can ease the anxiety.

What has your doctor told you about your condition? Have they recommended any type of treatment?

Hi @lmkmom, most of us whom have had a BMT are very willing to talk about the process. While you’re waiting for @katgob to reply, I’ll jump in with she’s the poster ‘child’ for how this should all go! ☺️
I found her first post from 2/14/24 where she and I first discussed the possibility of her having a BMT for MDS. Her story follows from this conversation on.
https://connect.mayoclinic.org/comment/1015856/
But then we switch over to this discussion where Kat joins in the conversation with @deb913 @mary612 @tkidd51 @alive @edb1123 @kt2013 @dwolden, @jrwilli1 and so many others, either patients or caregivers, who share our collective experiences with the BMT/SCT process.

~My BMT story. Will you share yours?
https://connect.mayoclinic.org/discussion/my-bone-marrow-transplant-bmt-story-will-you-share-yours/
I hope you find this helpful. I’ve given you quite a bit of information in this discussion you posted a few weeks ago: https://connect.mayoclinic.org/discussion/what-happens-to-all-of-the-vaccinations-you-had-as-child-ater-a-bmt/

Your doctor has recommended a bone marrow transplant because of your diagnosis with MF. Basically, your bone marrow is defective and no longer able to produce healthy blood cells. Blood cells start out as stem cells and then go on to develop into red or white blood cells or platelets. A bone marrow transplant is done by receiving healthy stem cells from a donor. The donor is chosen by the transplant team and then their cells will be collected and ‘flown’ to you.

Before that can happen the old marrow and any cancer cells will be eradicated with pre-conditioning the week before the transplant. Then the day of the transplant, referred to as day zero, the new cells are infused into an IV (you’ll have a port) just like a blood transfusion. It takes about 20-30 minutes for this process. Pretty anticlimactic considering all the excitement/anxiety leading up to this moment.
After that, it’s a long, but steady recovery. The first couple of weeks are the toughest with fatigue and sometimes nausea. Once the new cells engraft, (set up housekeeping in your clean marrow) they start producing blood cells and you start feeling better at a more rapid pace.
But recovery is slow. It will take months but usually after the first month you’ll feel more energy returning.
One of my close friends, whom I met while we were at Mayo having our transplants, had MF. She and I are both 6 years post. She has no signs of MF and I have no signs of AML. We’re healthy, fit and in our 70s…as though nothing has never happened.
One (of many) cool thing that happened with my transplant, I no longer have any allergies. I have my donor’s immune system and apparently he was quite healthy.

I’m here along with the group of us, whom I affectionately call my BMT posse, to help you in any way we can. What is your greatest concern or hesitation?

Can you share your experience with the bmt? Im waiting for one myself . No one likes to discuss it much. How long ago was it and are you rid of all that was wrong prior.

What treatments are you condidering?

I was diagnosed with myelofibrosis, mds & mpn in March 2025. Im waiting for a donor so i can get a bone marrow transplant. My diagnosis came 1 year after my first bone marrow biopsy. The first time i only had Jak2, then it progressed to cancer quickly. I have very low hemaglobin (6-7) high platelets 700+.
Im monitored every week. Im on Ojjaara and get a Procrit shot weekly