Living with MDS

Welcome to Connect, @smetzing I can surely understand the anxiety you and your husband are experiencing with his diagnosis of myelodyplastic syndrome. This condition in the bone marrow doesn’t allow for healthy blood cells to form. While it can take a while to develop and sometimes people have it for years, it bears watching.

There are different types of this bone marrow disease. In your husband’s case, if there is already a discussion about a bone marrow/stem cell transplant then he may have a type that may not be as treatable long term with medications.
A bone marrow transplant is the only known ‘potential’ cure at this time.

If your husband’s MDS progresses it may be suggested that he goes ahead with the transplant. I don’t want you two to live in fear of this! You’re right, the transplant isn’t a walk on the beach! But the ability to continue walking on the beach for many years to come after the transplant makes it all worthwhile! I would not be here to talk to you today if I hadn’t received a transplant over 4 years ago. Here’s a snapshot of life on the other side of transplant. https://connect.mayoclinic.org/discussion/snapshots-of-hope-life-on-the-other-side-of-transplant/

Getting healthy bone marrow cells from an unrelated donor was a gift of a second chance at life for me! Keep in mind that most of the time people only write in about the bad experiences they have. There are thousands of people annually who have bone marrow transplants who are doing fabulously! You seldom hear those stories. I’m one of them and that’s why I’m here to share the positive side of a bone marrow transplant. There here are several more of us in the forum who have had BMTs for various reasons and doing really well! It’s not all doom and gloom.

So if it comes to that, and there are no other options for your husband, please consider long and hard before you both decide no. ☺️

One thing to keep in mind is to make sure the clinic where he has the transplant has a very active, successful transplant department and does followups for a lifetime. I’m a patient of Mayo Clinic and was told that we were ‘married for life’ with my treatment. So even at 4 + years out, I still see my doctor semi-annually, have regular blood work (local labs) with the results sent to my transplant team. It’s vital to stay in contact with them so if there are any issues you are not left wondering how to get help.

Here are a couple of my go-to articles about MDS just for more helpful information:
https://www.verywellhealth.com/what-are-myelodysplastic-syndromes-mds-2252548
https://www.healthline.com/health/cancer/mds-hematology
Is your husband going to be having another biopsy considering the previous wasn’t viable?

My husband was diagnosed with MDS about 8 months ago. Just had another biopsy to make sure it’s stable, the biopsy was basically tainted with blood, so gave us no answers. We met with a transplant team, dr said right now he is stable it’s a wait and see thing but we have pretty much decided we won’t do the transplant after hearing the details. I have to be honest, I’m scared. I’m fixing him protein shakes and have him on Papaya extract and Vit B5. It raised his platelets 14,000.

Over the years I've had occasions where I was encouraged by my oncologist to get a second opinion. He even set up both of the appointments for me. It never hurts to hear what another professional has to say. I wish you well with your Oct visit.

Hey @jps01. Getting a second opinion is always an excellent idea. But the notion of you staying out of trouble is disappointing me! 😂

Good afternoon Lori and Snakebite, thank you again for your persistence in communicating. Those are indeed interesting articles. The hematologist who has been advising me is all-in, engaged, and wonderful. Yet, I also mentioned earlier the desire (desirability?) of getting a second opinion. What you have both been stating is confirming the advisability of doing so. And this is now going to happen for me in mid-October. In the meantime, need to continue to read, stay out of trouble, and take naps. 😊

Good morning, @jps01 I think we’re getting to be old friends here…I’m always popping up with tidbits for you. ☺️

I don’t understand the comment from your hematologist that transfusions will accelerate or trigger leukemia cells. Transfusions are an integral part of treatment for patients with blood conditions/cancers such as MDS and AML.
Most everyone I know, including myself, were given transfusions (blood and platelets) as a lifeline as the blast cells (immature white blood cells or, leukemic cells) proliferated and were crowding out the red blood cells. The anemia was staggering.

The transfusions can help reduce the symptoms of anemia,
prevents or treat bleeding associated with thrombocytopenia, which is low platelet count. And it can help increase white blood cells to fight infections.

~HEALTHLINE.com
https://www.healthline.com/health/anemia/blood-transfusions-for-myelodysplastic-syndromes
~medical news today article
https://www.medicalnewstoday.com/articles/acute-myeloid-leukemia-blood-transfusion
While your cytogenetic report indicates you’re fortunate to be at a low risk for development of anything in the future, I just wanted to give you the information about transfusions.

If you do require one or if your anemia gets too pronounced over time, I hope your doctor will consider a transfusion for you. For me it was getting a hit of 10 cups of coffee! 😅 Life saver!

I certainly appreciate your comments on naps and transfusions. At this point in my condition, i.e., that my cytogenetics indicate that I am in a “good” risk category, the hematologist stated that it is risky to give me transfusions, since they might result in accelerating the leukemia cells. In other words, I am currently fortunate since I can live with the anemia (what a pain), work at avoiding infections (had three over the past few months), try to get the time for regular naps, and get on with life. But I will certainly research all of the alternative treatments offered through the various comments offered… I am most aprrecative…

Just a quick comment. First, napping is good. It is certainly an indicator that your body most likely needs the extra rest. Sleep depravation plays a major factor in you health. Also, getting a Blood Transfusion when your numbers are low not only makes you feel better, which helps your attitude, but it also buys you time for other treatments to work and do their job. I dealt with them for years. At first I fought them thinking it was a last resort, or the beginning of the end.... it is neither, it is a necessary aid to help you get over the Hump. The Blood transfusions carried me through the really tough times and allowed me to make great progress in my journey back to a more normal life. Treatments like Dacogen can really take the wind out of your sails while it is doing it's job fighting the Cancer cells. Just about everything, RBC, WBC, PLT go down. So that transfusion of Blood really does give you a needed "Pick me up". Don't avoid them.

😂 Good morning, @jps01. You bet I sleep! Soundly from about 9:30 PM to around 5:30 AM. Then I’m the Energizer Bunny for the rest of the day. 🐰

Hello tjakusz! Welcome to this special club. Nobody wants to be in our group, but once you are it is a great place to get information and support. I am kmz2013 and am celebrating every day living in my 10th year of AML remission. Transplant was no picnic, but I knew it was my best chance to get to a durable remission. The key for me was to organize my support team of family, friends, and work colleagues to get through the side effects, tests, and appointments that accompany transplant. My other goal was to stay in the day. Yesterday is gone, tomorrow is uncertain, so today is my present. It isn’t always easy to ask for help, but I like helping others, so this was my turn to allow others to experience the joy of giving. Best wishes, we will be thinking and praying for you. Keep in touch, I am sending you a sunrise!