[Lillyput189]

Re: Brother has myeloma - side effects out of control

by Lillyput189 on Sat Oct 12, 2013 3:12 am

Dear Kore,

You're right. He's not getting the proper care. I talked to a myeloma nurse at MMRF & she told me the same thing. I'm trying to get him to Abramson/Penn in Philadelphia for the proper care. No one should suffer like him. Thanks for your reply.
Carol in PA

[NStewart]

Re: Brother has myeloma - side effects out of control

by NStewart on Sat Oct 12, 2013 7:37 pm

Lilyput-
It sounds like your brother really should present all of his problems to Dr. Stadtmauer the next time he has an appointment and request that a comprehensive review of his case be done. I would also suggest finding a different local oncologist who you trust and who will talk with you and Dr. Stadtmauer. Does the local oncologist your brother sees now coordinate your brother's care under the recommendations of Dr. Stadmauer?

Your brother may even consider going for another opinion at the Myeloma center at Hackensack in NJ or one of the centers in Manhattan. It wouldn't hurt. And, maybe he would get some help that he isn't getting now with a new look at everything.

Good luck,
Nancy in Phila

[kore]

Re: Brother has myeloma - side effects out of control

by kore on Thu Oct 17, 2013 11:12 pm

Dear L:

Please keep us posted on how your brother is doing.

Best,
kore

[Lillyput189]

Re: Brother has myeloma - side effects out of control

by Lillyput189 on Mon Oct 28, 2013 8:30 am

Well everyone, here is the latest update on my brother. He remains in remission. Thank the Lord. However, his side effects are getting worse. As I said before, he has lymphedema in his legs, compression fractures and collapsed vertebrae in his back, occlusion in his jugular vein, neuropathy in his hands, legs, and feet, and extremely poor short term memory. If that wasn't enough, now he has developed a "drop foot" on the left. His oncologist says that there's nothing for them to do as he is in remission and suggested seeing a neurologist. The neurologist says go to pain management and "if you want" you can have a nerve conduction study. The nurse from the oncs office called with his blood results for his Coumadin level and he told her all that's happening and she said, "I'm very frightened for you." The onc says see you in 2 months. My brother asked to see the onc in Philly earlier than his scheduled appointment but was told because he is in remission, they don't want to see him. My brother's health is deteriorating rapidly. He has fallen 4 times in the past 3 days from the drop foot. He falls asleep standing up and falls. He sits down to put his compression stockings on and falls asleep and then falls off the chair. His quality of life sucks.

Has anyone had any experience with these side effects? He took Velcade, Dex and Revlimid when he was first diagnosed, then went to Revlimid only which he stopped 6 months ago. He had a series of radiation treatments to his back to try to help the pain. It didn't. He stopped Zometa 1 month ago because they told him he didn't need anymore and had had enough of it. This just can't be right. I've seen others with this disease that are functioning without all this terrible stuff. Thoughts anyone? Thanks so much!

[kjpoppit]

Re: Brother has myeloma - side effects out of control

by kjpoppit on Tue Oct 29, 2013 2:06 am

I am so sorry to hear your brother is in such pain. I am new to multiple myeloma and going to start treatment soon. I am getting a second opinion from a specialist before I start treatment. Please find a new doctor and find a specialist. This does just not sound right. Best of luck.