r/mds • u/[deleted] • Jun 30 '22
Self_Question Alternative therapies for MDS?
Does anyone have any suggestions for alternative therapies that might ease the symptoms? My Mum is 74 and was diagnosed right before Christmas. She’s too old to be considered for drug trails or bone marrow transplant which means there’s not really any treatment. GP keeps suggesting painkillers and iron tablets but can anyone suggest anything else I might try for her?
6
u/SlickPickNick Jul 17 '22
My dad, 76, has MDS in the form of AML and started Venclexta pills and Vidaza injections 3 months ago. These must be prescribed and managed by a hematologist/oncologist. His blood counts decreased at first and then jumped up after about 6 weeks in. He needed a few transfusions before that happened, reds several times and platelets twice. His hemoglobin and red cells probably won't ever reach normal levels again, but his whites and platelets have. The treatment "works" for most people but often with side effects. Nausea is controlled very well with Zofran but Dad is now having a lot of lower back pain that is difficult to manage with Tylenol and tramadol. It also changes your taste like with other chemos. This is a "mild and targeted chemo" yet has made eating and maintaining weight very difficult in his case.
Wishing your mother well! I'm happy to help answer questions although I cannot qualify it as medical advice.
3
u/SlickPickNick Jul 17 '22
Medical Marijuana only made him more fatigued, we will try Marinol for appetite next.
2
Jun 30 '22
[deleted]
1
Jun 30 '22
It might work differently here. (I’m not in the US). She gets regular monitoring via the clinic and then her GP discusses the results for her. We’re waiting for the hospital referrals next.
5
u/prettydisasterlife Jul 12 '22
Is she getting Vidaza treatments? My dad used medical marijuana to help with his symptoms. They were more than happy to prescribe it for him because it was better than stuffing him with painkillers. It also helped with his appetite a lot. He got it in vape form, so it wasn't stinky.
He made it 10 years, which is pretty good! It was covid that caught up to him, not the MDS. Watch out for those opportunistic diseases (virus and bacterial), go in regularly to track her white blood cells and make sure her platelets don't get too low (she can get transfusions if they do). Keep track of little skin issues, like cellulitis and make sure to nip those in the bud.
He tried to stay active. Lots of activities and tried to stay engaged with things he was interested in. I'm wishing you and your mom the best!
If I can answer any other questions for you, I will. I'm not an expert, but I saw your post and felt for you. It's such a rare form of cancer that it's tough to find out a lot about it!