1. < Blood Cancers & Disorders
Profile picture for Frazer 1

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.

Profile picture for bernacon
bernacon | @bernacon | Feb 13, 2023
In reply to @bonniecanby "I'm dealing with the same. I am trying to get an appointment at mayo. I would..." + (show)
Profile picture for bonnie canby @bonniecanby

I'm dealing with the same. I am trying to get an appointment at mayo. I would give anything to get a strait answer. bonnie

Jump to this post

I am scheduled for an appointment shortly for the implantation of
"Interstim" ( sacral nerve stimulation to treat my bladder , nothing worked before and I have MM ). I am not very clear as to what I am going to get on the firstbappointment ( 1-2 weeks test, stimulator taped on my back before final inside implantation ), despite my questions .
Has anyone undergone the proprocedure ? and could comment on it and its efficacy ?
J would appreciate. Thank you

REPLY
1 reply
Profile picture for Chris, Volunteer Mentor
Mentor
Chris, Volunteer Mentor | @auntieoakley | Feb 13, 2023
In reply to @patty67 "On the same path with my husband. Diagnosed in November and started induction treatment in Dec...." + (show)
Profile picture for patty67 @patty67

On the same path with my husband. Diagnosed in November and started induction treatment in Dec. He will start his 4th cycle of induction therapy tomorrow. We live in Sacramento and plan to have an outpatient transplant at UCD. Has anyone else gone the outpatient route? Nervous about having him come home.

Jump to this post

Actually my husband had both auto stem cell transplants at Mayo, and they were outpatient. We stayed in long term housing and he came home and went back to the clinic every day for infusions.
He did spend 5 days in the hospital with his first at about day post 10. Because he just needed all of his medicines IV. This is pretty predictable for them since they do about 250 a year on that floor. The second one was a little harder and he went in to the hospital a little earlier, and stayed a little longer.
We didn’t feel totally on our own, we could call the floor day or night and get help or answers. They also sent me as the caregiver through classes to learn a ton of information and feel pretty confident before we started.
When is he supposed to start? Are you planning to stay close or do you live close to UCD?

REPLY
1 reply
Profile picture for Lori, Volunteer Mentor
Mentor
Lori, Volunteer Mentor | @loribmt | Feb 13, 2023
In reply to @patty67 "On the same path with my husband. Diagnosed in November and started induction treatment in Dec...." + (show)
Profile picture for patty67 @patty67

On the same path with my husband. Diagnosed in November and started induction treatment in Dec. He will start his 4th cycle of induction therapy tomorrow. We live in Sacramento and plan to have an outpatient transplant at UCD. Has anyone else gone the outpatient route? Nervous about having him come home.

Jump to this post

Hi Patty, actually having an outpatient experience with a SCT can be very positive. I had an Allogenic (using unrelated donor cells) transplant at Mayo-Rochester. There, all bone marrow transplants are basically outpatient. Statistics show recovery time can be aided by being in a ‘home’ environment. It’s safer than a hospital setting by reducing the possibilities for infection.
Patients move around more getting their own food from the fridge, they’re using their own bathrooms, sleeping in their own bed. Much better than when confined to a room or bed in a hospital.
Patients generally report to the clinic daily for blood work so it’s not as though you get the transplant and are pushed ‘out of the nest. If there are any complications then the patient gets admitted to the hospital again, asap.
Your husband, with his MM will most likely have a autogenic transplant using his own cells. That is of a much easier, faster recovery time simply because he is using his own cells…there’s no chance for rejection and graft vs host issues.
Do you have any specific questions I can help you with?

REPLY
1 reply
Profile picture for jimbond48
jimbond48 | @jimbond48 | Feb 13, 2023
In reply to @hectorhectoenriquez "That question is for a good resercher f MM, my wife had the bone marrow transplant..." + (show)
Profile picture for hectorhectoenriquez @hectorhectoenriquez

That question is for a good resercher f MM, my wife had the bone marrow transplant and also the Cart t cell and did not work. But in most of the cases work, your DNA establishes the rules

Jump to this post

Have you looked into an allo SCT? I’ve had 2 in 31 years, the last one a decade ago, in remission ever since, no maintenance. Each case is different. My 4 minute YouTube videos give our lessons learned. Search 30 year myeloma survivor patient 007 to view.

REPLY
Profile picture for lasfarolas
lasfarolas | @lasfarolas | Feb 13, 2023
In reply to @jimbond48 "I was 64 when I had my last of 4 stem cell transplants, an allo. The..." + (show)
Profile picture for jimbond48 @jimbond48

I was 64 when I had my last of 4 stem cell transplants, an allo. The hospital’s transplant review doctors based their decision on whether I had a reasonable chance to survive the proposed SCT on their assessment of my mental and physical strength. Doing daily exercise and being active were key reasons they agreed to do this one. It put me in remission, where I’ve been the last decade.
This and other lessons we’ve learned are covered in 4 minute YouTube videos. Search 30 year myeloma survivor Patient 007 to watch.

Jump to this post

All the best with the next 30 years.
Ole

REPLY
Profile picture for patty67
patty67 | @patty67 | Feb 13, 2023
In reply to @auntieoakley "@callie28 , @judithc I hope to give you a little information and/or encouragement with my husbands..." + (show)
Profile picture for Chris, Volunteer Mentor @auntieoakley

@callie28 , @judithc I hope to give you a little information and/or encouragement with my husbands story.
He was diagnosed in spring of 2010, the first transplant at Mayo Rochester left him with a little residual disease. So they gave his body a few more months to recover and as the myeloma reared up, he went on a second induction therapy of 4 months, and back to transplant. By this time he was 70 but overall still in pretty good shape. This transplant was much harder on him, although the first wasn’t really easy. Again the Mayo team were rock stars in knowing what to expect and handling it.
This time he got a complete response, revlomid maintenance was recommended and he took that for two years.
He has had a few years at a time completely treatment free, and plenty of months of treatment that weren’t really easy, but not horrible. He will soon reach 13 years with myeloma, I believe this might have been an easier time had he been diagnosed earlier. He had bone lesions in virtually every bone when diagnosed. I believe his Mayo team and our most awesome Mayo trained doctor locally, have helped give us the gift of the last 13 years together.
If you have any questions for me, please feel free to tag me.
@judithc where do think you might be looking to have transplant?

Jump to this post

On the same path with my husband. Diagnosed in November and started induction treatment in Dec. He will start his 4th cycle of induction therapy tomorrow. We live in Sacramento and plan to have an outpatient transplant at UCD. Has anyone else gone the outpatient route? Nervous about having him come home.

REPLY
3 replies
Profile picture for jimbond48
jimbond48 | @jimbond48 | Feb 11, 2023

I was 64 when I had my last of 4 stem cell transplants, an allo. The hospital’s transplant review doctors based their decision on whether I had a reasonable chance to survive the proposed SCT on their assessment of my mental and physical strength. Doing daily exercise and being active were key reasons they agreed to do this one. It put me in remission, where I’ve been the last decade.
This and other lessons we’ve learned are covered in 4 minute YouTube videos. Search 30 year myeloma survivor Patient 007 to watch.

REPLY
1 reply
Profile picture for hectorhectoenriquez
hectorhectoenriquez | @hectorhectoenriquez | Feb 10, 2023
In reply to @judithc "I’d like to hear results of stem cell transplants. I’m trying to decide whether to get..." + (show)
Profile picture for judithc @judithc

I’d like to hear results of stem cell transplants. I’m trying to decide whether to get a transplant or maintain my MM with chemo. I am a 74 year woman in good health but my age is a big concern. My understanding of transplants is it is hard on your body and could cause damage to your organs and you are very susceptible to infections.
I’d like to hear from someone around my age that had to make this decision and what they decided to do and how it turned out. I was diagnosed with multiple myeloma July 2022 with 45% cancer in my bone marrow. I am now at 10%.
Any info would be helpful.

Jump to this post

That question is for a good resercher f MM, my wife had the bone marrow transplant and also the Cart t cell and did not work. But in most of the cases work, your DNA establishes the rules

REPLY
1 reply
Profile picture for hectorhectoenriquez
hectorhectoenriquez | @hectorhectoenriquez | Feb 10, 2023
In reply to @islander123 "I have been diagnosed with MM stage 1. I am considering treatment at Mayo Clinic. The..." + (show)
Profile picture for islander123 @islander123

<p>I have been diagnosed with MM stage 1. I am considering treatment at Mayo Clinic. <br /> The challenge is that I live in CA. If there are any out of town folks who have been treated at Mayo I would very much like to hear the pros and cons that you experienced and how it worked.</p>

Jump to this post

My wife was treated at Md Anderson and Mayo. Both gave the best treatment, unfortunally when they discovered her cancer it was Level 3. The best place. Help in Healing Home at Mayo Village is a good place to stay

REPLY
Profile picture for judithc
judithc | @judithc | Feb 10, 2023
In reply to @auntieoakley "@callie28 , @judithc I hope to give you a little information and/or encouragement with my husbands..." + (show)
Profile picture for Chris, Volunteer Mentor @auntieoakley

@callie28 , @judithc I hope to give you a little information and/or encouragement with my husbands story.
He was diagnosed in spring of 2010, the first transplant at Mayo Rochester left him with a little residual disease. So they gave his body a few more months to recover and as the myeloma reared up, he went on a second induction therapy of 4 months, and back to transplant. By this time he was 70 but overall still in pretty good shape. This transplant was much harder on him, although the first wasn’t really easy. Again the Mayo team were rock stars in knowing what to expect and handling it.
This time he got a complete response, revlomid maintenance was recommended and he took that for two years.
He has had a few years at a time completely treatment free, and plenty of months of treatment that weren’t really easy, but not horrible. He will soon reach 13 years with myeloma, I believe this might have been an easier time had he been diagnosed earlier. He had bone lesions in virtually every bone when diagnosed. I believe his Mayo team and our most awesome Mayo trained doctor locally, have helped give us the gift of the last 13 years together.
If you have any questions for me, please feel free to tag me.
@judithc where do think you might be looking to have transplant?

Jump to this post

Thank you for replying. It sounds like they have him on a good treatment plan.
If I have it done, I’ll have performed at mayo in phoenix.

REPLY
View MoreView Less
Please sign in or register to post a reply.