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Living with MDS (Myelodyplastic Syndromes)
Blood Cancers & Disorders | Last Active: Aug 30 4:21pm | Replies (229)Comment receiving replies
Wow, Lori! Thank you for your wonderful message. It is very comforting to talk with knowledgeable people. Time with the hematologist is so valuable, but it is so short. -- We have been tracking my wife's blood numbers for about 18 months. During those 18 months, only one CBC showed 10% blasts, and that was about a month ago. CBCs in recent weeks show no blasts. Platelets have always been normal, but WBCs have always been low (see chart). We had a second bone marrow biopsy two months ago. -- The current treatment is weekly blood draws and retacrit shots, plus a recommendation from the hematologist "It is time to start Vidaza, but it is up to you." -- My wife has been a caregiver for her 106-year-old Mom for 20 years. In early February the stress of caregiving caught up with her and she ended up in the hospital with a duodenal ulcer and sepsis. It threw her for a loop. Her hemoglobin number got down as low as 5.5 during the hospital stays, but it has been a little better recently. As you know, we are struggling with the Vidaza decision. Thanks for your encouragement. -- Before the hospital episode (it was awful), we had a functional doctor who recommended lots of protein in the diet. It definitely helped and the numbers started to stabilize. But he, too, now recommends Vidaza. -- Finally, I want to make it clear that the chart that shows Ivermectin is just "talking paper" to discuss with the hematologist in detail next week. We will take his guidance. -- signed, the husband!
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Oh my goodness, your mom is 106 years young?? That’s amazing. I hope she’s still doing well and that you have some help with the caregiving duties now. It’s not easy being a caregiver and it does certainly take its toll on the body. I went through that with my mom, though she only lived to 88.
Not sure whom to write to here so husband and wife 😁With your appreciable drop in hemoglobin your doctor has you taking Retacrit injections to help promote your blood cell production. I know you’re both reluctant to start the Vidaza because it’s termed a chemotherapy. But the medication is designed to help the bone marrow produce more healthy and normal functioning cells. By treating the MDS, it can help increase blood cell counts, reduce the risk of infection, reduce the amount of blood transfusions needed, decrease the risk of bleeding, and to help prevent MDS from transforming to AML.
Yes, there can be side effects such as a temporary drop in all of the blood numbers the first week or so after the injection, along with fatigue. But by eliminating the cancerous cells in the marrow, this allows for healthy blood cells to regenerate. It’s not meant to be a cure but it be helpful in reducing some of the symptoms of MDS.
Having gone through intensive chemotherapy and a bone marrow transplant, I truly appreciate your hesitancy to start a chemotherapy drug. But chemo can be a life saver. To do nothing is to, well, do nothing…allowing for cancer cells to continue to proliferate.
To your husband: you sound very much like my husband, spread sheets and a notebook in hand with a list of questions! It’s great to be prepared and it does help to have the questions written down with the limited time we have with our clinicians. Easier to stay on task!
This is such a personal decision for both of you to make. So I think the visit with the hematologist next week will be really beneficial to address your concerns. Will you let me know what you decide?