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Multiple Myeloma: Come introduce yourself and let's talk
Blood Cancers & Disorders | Last Active: Feb 13 1:18pm | Replies (220)Comment receiving replies
I am new to this group, and was diagnosed with MM in June, 2019. I also had multiple lytic lesions, all over, on diagnosis. I am being treated locally, with RVD, now on week 9. I have consulted with a wonderful hemotoligi st at Mayo in Jacksonville, for a possible Autologous SCT. I am my own advocate, at present, and am learning all I can. I need to exercise, and have been walking once or twice a day. I have fatique all of the time, and am also afraid of pathological fractures, so walking seems the safest thing to do, for now. I am also very careful not to fall. Thank you for your post, because I am nervous about the SCT. But 9 years is a lot, after this recent diagnosis, which has turned our life upside down.
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Good for you, that you are learning all you can. I really feel like the information is so crucial with this complicated disease. Have you gone to the IMF and requested the information pack yet? You can pick them up at Mayo too. Husband was told swimming and walking were really his only options for safe exercise but walking was the most beneficial. Transplant was hard for him but it is only one dose and when it is done, it is done and you have time to recover, he has had two with the second about a year after the first giving him a complete response. You can do this! We went to Rochester but I am sure it will be basically the same. If you are going to go, give me a tag and I will share my best tips. You can take what you like and discard any tips you don’t need. I hope you don’t mind, but you just landed on my prayer list. I would like to address the fatigue, I know it is hard now, and every body is different. That being said, my husband was very,very fatigued for a long time before he was diagnosed. If it was eating holes in all your bones it was pretty advanced like his was. He actually started feeling better after a while on the revlomid. The transplant knocked him down but then he actually started feeling better and better. The treatments can cause fatigue, but in his case at least, the lack of normal blood counts was the big driving factor for fatigue, the more the disease got under control, the less fatigue he felt. I will say that he is tired a lot now, but he is mid 70s, and still does quite a bit each day.