1. < Blood Cancers & Disorders

Want to talk about Multiple Myeloma: Anyone else?

Posted by Frazer 1 @frazer1, Apr 11, 2012

Asking anyone who is going thru this experience to share any pro's or con's of this disease. As of now I'm in MGUS, will find our next week if it has progress to Smoldering Myeloma.

Interested in more discussions like this? Go to the Blood Cancers & Disorders Support Group.

patty67 | @patty67 | Apr 15, 2023

My husband is on the fast track for his stem cell transplant. This past week he had his apheresis catheter implanted, ouch, and a successful stem harvest. They managed to harvest over 13,000,000 stem cells on the first day! Thankfully we have the weekend off now before the chemo and transplant next week.

He is experiencing intense restless leg syndrome and sleeplessness at the moment. Has anyone had similar problems? Not sleeping is driving him crazy. Any recommendations would be much appreciated.

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1 reply
patientpainter | @patientpainter | Apr 16, 2023

Hi just had apheresis stem cell collection myself. Read a little, picked up that low calcium , and or vitamin D, can cause restless keg- and apheresis can throw those balances out of whack. Phosphorus may also figure in. Ask your doc if you can safely supplement.

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2 replies
patientpainter | @patientpainter | Apr 16, 2023
In reply to @patientpainter "Hi just had apheresis stem cell collection myself. Read a little, picked up that low calcium..." + (show)
@patientpainter

Hi just had apheresis stem cell collection myself. Read a little, picked up that low calcium , and or vitamin D, can cause restless keg- and apheresis can throw those balances out of whack. Phosphorus may also figure in. Ask your doc if you can safely supplement.

Jump to this post

(oops restless legs syndrome!).

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1 reply
patientpainter | @patientpainter | Apr 16, 2023
In reply to @patientpainter "(oops restless legs syndrome!)." + (show)
@patientpainter

(oops restless legs syndrome!).

Jump to this post

One last thought, re.the sleeplessness: anxiety may have a lot to do with it. I take one gabapentin at 10 pm, go to bed at 11. It seems to help somewhat,with twitching and getting to sleep.

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Mentor
Lori, Volunteer Mentor | @loribmt | May 11, 2023
In reply to @patty67 "My husband is on the fast track for his stem cell transplant. This past week he..." + (show)
@patty67

My husband is on the fast track for his stem cell transplant. This past week he had his apheresis catheter implanted, ouch, and a successful stem harvest. They managed to harvest over 13,000,000 stem cells on the first day! Thankfully we have the weekend off now before the chemo and transplant next week.

He is experiencing intense restless leg syndrome and sleeplessness at the moment. Has anyone had similar problems? Not sleeping is driving him crazy. Any recommendations would be much appreciated.

Jump to this post

Good morning @patty67, Did your husband have his stem cell transplant yet? How’s he feeling?

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emmag2 | @emmag2 | May 12, 2023
In reply to @lisal64 "They have Mayo in Arizona. I see an MM specialist at Mayo, Jacksonville, FL. It is..." + (show)
@lisal64

They have Mayo in Arizona. I see an MM specialist at Mayo, Jacksonville, FL. It is a 2 1/2 hour drive from our home in South Georgia. We even drove it for Chemo, once a week (3 wk on/1 wk off), for 4 months. I had my SCT there, too. They are all wonderful, at Mayo. They have great organization, and communicatin skills down pat! And the professionalism can't be beat, in my opinion. It was worth every mile. I go back in June for my 2 year re-check.

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May I ask which doctor do you see at Mayo?

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1 reply
lisal64 | @lisal64 | May 12, 2023
In reply to @emmag2 "May I ask which doctor do you see at Mayo?" + (show)
@emmag2

May I ask which doctor do you see at Mayo?

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Yes, I see Dr. Vivek Roy. Mayo, Jacksonville, FL

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emmag2 | @emmag2 | May 13, 2023

Ok, thank you. I’m assuming that you are happy with Dr. Roy? Good communicator? Easy to talk to?
Thank you!

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abarrett89 | @abarrett89 | May 15, 2023

I’m still in the diagnosis stage. Had an MRI which showed 2 lesions on my spine. My blood work was ok, but I have M-spike protein and high protein etc in my urine. Joy! I see my PCP tomorrow. I’m expecting the next steps to be a bone marrow biopsy and then to oncology. I had Hodgkin’s Lymphoma back in 2001, so I’ve been through this before. It’s still pretty awful, though.

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1 reply
Mentor
Ginger, Volunteer Mentor | @gingerw | May 16, 2023
In reply to @abarrett89 "I’m still in the diagnosis stage. Had an MRI which showed 2 lesions on my spine...." + (show)
@abarrett89

I’m still in the diagnosis stage. Had an MRI which showed 2 lesions on my spine. My blood work was ok, but I have M-spike protein and high protein etc in my urine. Joy! I see my PCP tomorrow. I’m expecting the next steps to be a bone marrow biopsy and then to oncology. I had Hodgkin’s Lymphoma back in 2001, so I’ve been through this before. It’s still pretty awful, though.

Jump to this post

@abarrett89 Welcome to Mayo Clinic Connect. I am sorry to hear of another health issue that has come up for you, even though you are staying on top of it.

Will you let us know what comes out of your appointment, please? Do you have any questions for me at this time?
Ginger

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