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Living with MDS (Myelodyplastic Syndromes)

Blood Cancers & Disorders | Last Active: Jul 25 10:15am | Replies (257)

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Profile picture for grandmatoni @grandmatoni

I have been receiving treatment for MDS for almost 10 years. My primary doctor got concerned because my hemoglobin had been running low for quite a while, so she referred me to a Hematologist/Oncologist. When I met with him after reviewing my blood tests, he told me he had a pretty good idea what my problem is, but wanted to do a Bone Marrow biopsy to be sure. I was frightened, but he said that would be the best way to determine my treatment, After the biopsy, he confirmed that my problem is MDS as suspected. He explained that my bone marrow does not produce enough healthy red blood cells. He started me on 600mg of B6 which is supposed to help the red blood cells. Wasn't working well enough. He then prescribed a medication (injection) which he said should work better. It did. However I was still extremely tired and had zero energy. After a couple years on the medicine (can't remember the name) he told me that a doctor he went to med school with was on the panel testing a new medication which he said appears to be perfect for me. At the time it wasn't available yet, but he said as soon as it was, we would start it. It wasn't long after, that he got the OK from my insurance and I began receiving REBLOZYL (luspatercept). My hemoglobin immediately rose to acceptable levels. I still needed regular injections, but the results were much better. Now I have my blood tested every three weeks and depending on the results, I get my injection. For the last couple years, I've been getting injections almost every 3 weeks. I am still without much energy and there's a lot of things I can no longer do, but I am here and doing OK. I have several other medical issues which makes it hard for me, namely osteoarthritis, scoliosis, disc issues, sciatica to name a few. But again I am 83 and I have a beautiful daughter that tries to squeeze in time to clean my house every couple of weeks, my husband (91) also helps when he can. There is one thing that I am concerned with. I have been having pain in my leg and when I rub it it feels numb. My orthopedic doctor did an MRI and said he cannot figure out what it is. The MRI showed two white spots, one between the tibia and fibula and one on the outside of the bones. He said it might be related to my MDS and would send a copy to my doctor. When I next saw him, I asked him if hew got the MRI and if he knew what it was. He said don't worry, it just from the medication. We repeated the MRI 6 months later and there were no changes, but I am still worried. I do believe very much in prayer and every night I pray to St, Peregrine that I do not have cancer. There has been so much Cancer in my family that it really wouldn't surprise me. I am sorry that I have been rattling on, however I really don't have anyone that understands except my doctors. Most of my family and friends never heard of MDS. Thanks for listening.

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Replies to "I have been receiving treatment for MDS for almost 10 years. My primary doctor got concerned..."

Hi @grandmatoni Welcome to Connect. So glad you’ve chosen us to be your new friends and family. ☺️ We may be strangers but sharing a common bond with a medical condition can make for a tightly knit group.

You have a wonderfully positive attitude for dealing with all the changes that have occurred over the years. I think as we age, we realize there are always compromises. Hah, as if we have any other option but to go with the flow, right? But aging still comes as a shock! I was just at a graduation party yesterday. Oh my gosh, since when did I get to be oldest person at these parties! 😳 Now I’m the crazy old lady next door. Giggle

Back to business: Full disclosure, I do not have MDS but did have AML (acute myeloid leukemia) which is a related blood cancer. However, there are quite a few members who also have MDS with plenty of conversations regarding symptoms and treatments. Keeping in mind there are several types of MDS. Some have different risk profiles for progression. You appear to be in a lower risk group which is good news.
To get you introduced to more members, here is a link to all the discussions involving MDS references.
https://connect.mayoclinic.org/search/
The fatigue caused by MDS can be really frustrating when you feel like being active but lack the energy. It looks as though you have a great response to the REBLOZYL which is used to help treat the anemia related to MDS.

I know you’re worried about the white areas on your MRI for your leg. MRIs can pick up areas of inflammation. Sometimes, brighter spots can just be normal anatomical variations or cartilage irregularities. But you know your body better than anyone else and it’s ok to be the squeaky wheel to keep on having updates. So while it most likely isn’t anything of significance, you can certainly keep your doctor reminded of your concerns!
When you say the leg is numb, is it just in the same area shown on the MRI? Was this your oncologist reviewing the MRI?