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Thank you, for your kind comments. Our lives are not challenge free for sure. My husband is on a 5 lb limit for life, because Myeloma ate holes in all of his bones before he was diagnosed. This is moderated some by the bone strengtheners but preventing more fractures is crucial to his quality of life. Although we have a great oncologist less than 60 miles away, the local medical climate is one of closed minds and doors and does not play well with others. This creates a bit of tension if there is an emergency. My husbands has a very limited immune system and has had to be hospitalized once locally for a pneumonia gone wrong. He also some other typical age related health issues that become a little more difficult when the Myeloma and bone disease have to be considered before physical therapy. All new prescriptions for thyroid, prostrate etc. must go through the interaction filter for the drugs he is already receiving. That being said, I manage his medications, and he is careful with his bones, and we try avoid exposure to viruses, and still we enjoy our time traveling within our region, watching movies, and visiting with friends and family. I am a patient advocate for anyone who asks locally, and spend a bit of time educating people about how to be a part of your own medical team. All of which I learned from our experiences at Mayo Clinic. We were blessed to be able to have his stem cell transplants there, being part of that amazing system makes you long to help others who have to try and manage complicated diseases without that kind of help.

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Replies to "Thank you, for your kind comments. Our lives are not challenge free for sure. My husband..."

Hi! As both patient and Mentor, I see your post as valuable on more than one level. Any chance you are encouraged to make other contributions at another time?

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.