Myelodysplastic Syndrome (MDS)

Posted by kjjjrader @kjjjrader, Nov 8, 2019

I am a caregiver for my husband who has recently been diagnosed with MDS. He has MM which he was treated for with a stem cell transplant using his own cells in January of 2018. He did 18 months of Revlimid post transplant as maintenance. His counts always were low once he started treatment and he had three incidences of pneumonia in those 18 months. The last time was September 2019 his neutrophils dropped to 300 and his hemoglobin (9.3) and platelets (83) also dropped. None of his counts recovered very quickly so they did another bone marrow biopsy and discovered the MDS. His MM is in remission but they discovered MDS. With the new diagnosis of MDS he no longer takes revlimid.

My question is, are their other people on connect who have gotten MDS from treatment or even have MDS? How long have you had MDS and are they monitoring it or have you had a bone marrow transplant with donor cells? And how was the transplant? We have lots of questions. So any answers would be helpful.

Interested in more discussions like this? Go to the Blood Cancers & Disorders Support Group.

mkt24 | @mkt24 | Mar 6 7:18pm

In reply to @mkt24 "More info on myleodysplastic syndrome for us 85 year olds please." + (show)

My docs have told me over and over that MDS is an autoimmune disease. Soooo which is it??? Yes or no???

Colleen Young, Connect Director | @colleenyoung | Mar 21 4:20pm

In reply to @mkt24 "My docs have told me over and over that MDS is an autoimmune disease. Soooo which..." + (show)

@mkt24,
Myelodysplastic syndromes are a group of disorders caused by blood cells that are poorly formed or don't work properly. Myelodysplastic syndromes result from something amiss in the spongy material inside your bones where blood cells are made (bone marrow). (https://www.mayoclinic.org/diseases-conditions/myelodysplastic-syndrome/symptoms-causes/syc-20366977)

Approximately 10–20% of patients with myelodysplastic syndrome (MDS) also have autoimmune diseases (AD) which can be challenging to recognize. (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3699612/)

Has any treatment been recommended for you? Did you have a pre-existing autoimmune disorder before being diagnosed with MDS?

mkt24 | @mkt24 | Mar 21 4:54pm

In reply to @colleenyoung "@mkt24, Myelodysplastic syndromes are a group of disorders caused by blood cells that are poorly formed..." + (show)

Am 0n Aransep injection 300 mg ( 12 years)

At first they said I was autoimmune said stay out of crowds no church, no restaurants grocery stores,etc.
anemic then had blood transfusion then iron infusions . Wanted to start inquoivi and one or two other high powered and expensive drugs. I said no-I’m not a Guinea Pig. My hemoglobin is holding steady at 10. Have weak days, nausea and headache often . No stem cell surgery or other invasive procedure.
I go to Texas oncology. Just doing best I can. Am 85 years young.
Repair people want to overcharge us elders and cities don’t have transportation for us to get to the many appointments we need to get to for medical treatments. Group homes 0ly transport 12 miles from facilities. Few indoor heated pools. They are excited they provide 3 meals a day for $4,000 month!!!!!
Now I live alone with one day, 4 hours shift, woman to clean house and take me to store or labs for every other week blood draw.
I can no longer walk far because of hip bursitis. Did have various untrained physical therapists but they forget to show up and I really would be better off in a heated pool or have a massage therapist.
Ah well we can keep looking.

alpinegirl | @alpinegirl | Mar 22 1:26pm

In reply to @colleenyoung "@mkt24, Myelodysplastic syndromes are a group of disorders caused by blood cells that are poorly formed..." + (show)

I contacted MDS after having surgery for a growth in my colon. I now have anemia with low counts of hemoglobin. Too old for stem cell transplants (86). giving chemo a try starting
Monday.

alpinegirl | @alpinegirl | Mar 22 1:33pm

I am 86 (too old for stem cell transplants) My problem started when I had surgery for a growth on my colon.
I get weekly transfusions as I am anemic and my hemoglobin drops down to 6. My biggest problem is having
SPLITTING headaches. Going to start chemo on Monday - to see if it helps

mkt24 | @mkt24 | Mar 22 2:29pm

Blessings to and for you. Am 85. No stem cell treatment either.
Am on Aransep now 12 years.
Prayers for your chemo treatment!

alpinegirl | @alpinegirl | Mar 22 3:46pm

In reply to @mkt24 "Blessings to and for you. Am 85. No stem cell treatment either. Am on Aransep now..." + (show)

thank you!!!!

Lori, Volunteer Mentor | @loribmt | Mar 22 6:26pm

In reply to @alpinegirl "I am 86 (too old for stem cell transplants) My problem started when I had surgery..." + (show)

Anemia and low hemoglobin can be causes of nasty headaches…I remember. I felt so much better once the chemo started. So I hope this helps you feel more like your normal self and to help you get your blood numbers under control. That low level of hemoglobin is so fatiguing, isn’t it?
Please let me know how you’re doing. I’ll be thinking about you Monday.
What type of chemo are you taking? Will this be infusions or pill form? Is this a monthly cycle?

suetex | @suetex | Mar 23 11:17am

I have been diagnosed with MDS after a Bone Marrow Biopsy and have low platelets, currenty being treated with injections for low white and RBCs. The only thing I have high is my monocytes. They're close to 40% at the moment. That concerns me. I would like others take on this situation.