When my husband was diagnosed with multiple myeloma in October, his M-Spike was 5.64. Originally, he was on a twice weekly Velcade/Dex regimen. The Velcade began to cause problems with his legs, and there was inflammation in his liver. His oncologist reduced the dosage and changed the frequency to once weekly, but the pain continued.
He has a compression fracture in the L1, but the Neurosurgeon does not think it is severe enough to cause the amount of pain that he experiences. After reading some of the articles, I'm beginning to wonder if the Velcade has caused nerve damage and is causing the problem.
The pain in his back and legs has been almost uncontrollable, so the decision was made to stop the Velcade, but continue the Dex so that the multiple myeloma would not get out of control. The latest lab work has shown that his M-Spike has not changed since December, and has plateaued at 0.3. His oncologist has now indicated that the Dex will not be continued.
He is currently under the care of a Pain Management Specialist and is receiving injections (nerve blocks) to try and control the pain.
He has been referred to the Bone Marrow Transplant Clinic at UT Southwestern in Dallas, treatment but his pain has to be under control before they will see him. He has a couple of strikes against him, other than the pain ..... he's 73 and a Type 2 Diabetic.
Had he gone into complete remission, with Velcade/Dex, he probably would not have considered a SCT.
Question: How long before the M-Spike will start to increase? His oncologist is not a multiple myeloma Specialist, but he does consult with a multiple myeloma Specialist in Dallas. Is anyone familiar with the Dallas facility?
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Sarah - Name: Sarah
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: October 7, 2010
- Age at diagnosis: 72
Re: M-Spike has plateaued
This is rough and I'm sorry he is having such trouble. The reason we treat people with myeloma is to both improve and prolong life; here we doctors have clearly only gone halfway to where we need to be.
1. I absolutely agree with you that you need to focus on his pain. Improvements in his pain control are crucial as the importance of putting his myeloma in remission is clearly pointless if he has uncontrolled pain. Vertebroplasty/kyphoplasty, implanted dilaudid epidural pump, increased narcotics, and adjuvants (lyrica/neurontin +/- cymbalta) have all be used for pain control with significant success.
2. Dexamethasone is not a validated maintenance regimen and should not be used. Neither is prednisone in most patients given the options currently available.
3. He's 73 y.o. with type 2 DM and uncontrolled pain. In most patients > 70 y.o., high dose IV melphalan (aka autologous stem cell transplant) has more risks than benefits. I recommend maintenance treatment for your husband with either Revlimid or Velcade or both, AFTER his pain is better controlled and his so-called performance status improves.
His M-protein will likely rise in less than 18 months.
I don't know anyone in Dallas with established myeloma expertise. Larry Anderson might fit the bill though.
1. I absolutely agree with you that you need to focus on his pain. Improvements in his pain control are crucial as the importance of putting his myeloma in remission is clearly pointless if he has uncontrolled pain. Vertebroplasty/kyphoplasty, implanted dilaudid epidural pump, increased narcotics, and adjuvants (lyrica/neurontin +/- cymbalta) have all be used for pain control with significant success.
2. Dexamethasone is not a validated maintenance regimen and should not be used. Neither is prednisone in most patients given the options currently available.
3. He's 73 y.o. with type 2 DM and uncontrolled pain. In most patients > 70 y.o., high dose IV melphalan (aka autologous stem cell transplant) has more risks than benefits. I recommend maintenance treatment for your husband with either Revlimid or Velcade or both, AFTER his pain is better controlled and his so-called performance status improves.
His M-protein will likely rise in less than 18 months.
I don't know anyone in Dallas with established myeloma expertise. Larry Anderson might fit the bill though.
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Dr. Craig Hofmeister - Name: Craig C. Hofmeister, M.D.
Re: M-Spike has plateaued
Dr. Hofmeister: Thank you so much for your response.
Vertebroplasty was tried, without success - as well as a several other medications. The only thing that really seems to ease the pain, unfortunately, is steroids. He would have relief for a couple of days, after receiving the 20 mg. of Dexamethesone, on the day of Chemo. He has also been given the Medrol packs (Prednisone) to help. The very drugs that weaken the bones are the ones that give him relief.
MS-Contin, Dilaudid, and Fentanyl Pain Patches have all been used and do not work unless given in conjunction with the steroids. Dilaudid, in the IV, does work but that has only been used in a hospital setting. He has been hospitalized several times because of the pain.
I requested that a Pain Management Specialist be called in. Yesterday, he performed an injection into the Facet Joints and this seems to be helping - along with delaudid for brreak-through pain.
Dr. Anderson is the Specialist with which our oncologist is conferring. We are concerned that the SCT procedure (Melphalan) may be too intense. Also, why go through this horrendous process if the multiple myeloma can be kept in remission with maintenance drugs.
How can we find out how many SCT procedures have been done at UT Southwestern, as well as the results? We are in an area surrounded by several good multiple myeloma sites, and would be willing to go elsewhere.
Thanks so much for your information and advice.
Sarah Gorrell
Vertebroplasty was tried, without success - as well as a several other medications. The only thing that really seems to ease the pain, unfortunately, is steroids. He would have relief for a couple of days, after receiving the 20 mg. of Dexamethesone, on the day of Chemo. He has also been given the Medrol packs (Prednisone) to help. The very drugs that weaken the bones are the ones that give him relief.
MS-Contin, Dilaudid, and Fentanyl Pain Patches have all been used and do not work unless given in conjunction with the steroids. Dilaudid, in the IV, does work but that has only been used in a hospital setting. He has been hospitalized several times because of the pain.
I requested that a Pain Management Specialist be called in. Yesterday, he performed an injection into the Facet Joints and this seems to be helping - along with delaudid for brreak-through pain.
Dr. Anderson is the Specialist with which our oncologist is conferring. We are concerned that the SCT procedure (Melphalan) may be too intense. Also, why go through this horrendous process if the multiple myeloma can be kept in remission with maintenance drugs.
How can we find out how many SCT procedures have been done at UT Southwestern, as well as the results? We are in an area surrounded by several good multiple myeloma sites, and would be willing to go elsewhere.
Thanks so much for your information and advice.
Sarah Gorrell
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Sarah - Name: Sarah
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: October 7, 2010
- Age at diagnosis: 72
Re: M-Spike has plateaued
I would think you should be able to request from UT Southwestern basic information about the number of SCT procedures they do in a year and some measure of success (treatment-related mortality if nothing else). If it's not too far to travel, I would think MD Anderson Cancer Center would be a very reputable center with lots of experience doing SCTs.
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Charlotte
Re: M-Spike has plateaued
Sarah - it's interesting because my husband started on the dex last week again and the nerve pain we had been discussing has eased up. On the advice of the onc we canceled the nerve injection reasoning he could get it later if the nerve pain popped back up. Now, whether it was from starting dex again or the higher dosage of neurontin, who knows. I wonder if our husbands would have been better off with the once a week Velcade regimen at their ages. Perhaps it would have been as effective in their case, with less neuropathy, and they could have withstood it for a longer period. Take care and keep us posted as to how he is doing.
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valerie - Name: Valerie
- Who do you know with myeloma?: My husband
- When were you/they diagnosed?: June, 2010
- Age at diagnosis: 74
Re: M-Spike has plateaued
Valerie: I'm just certain that the steroids are the only thing that eases Bob's pain. He would take 20 mg of Dex on Tuesday, and would be pain free until about 10:30 (I had it down to the minute) on Thursday night.
Finally, I began to ask for a Medrol (Prednisone) pack on Thursday, and that would take him to Monday. The Neurontin never did anything to ease his pain, because his seemed to start in his back and travel down his legs and wasn't just in his hands and feet.
The steroid injection that he received, on Friday, has done wonders. I've only had to give him 4 mg. of Delaudid, a couple of times, for "break-through" pain.
Charlotte: For some reason, our Oncologist does not like to refer to MDA in Houston. He has had some unfortunate results (or rather, his patients have) at that facility.
I really doubt that Bob will choose the SCT route, if continuing maintenance Chemo will provide the same results. We are just going to investigate all options. Thanks for the suggestion of requesting success rates from UT Southwestern.
Sarah
Finally, I began to ask for a Medrol (Prednisone) pack on Thursday, and that would take him to Monday. The Neurontin never did anything to ease his pain, because his seemed to start in his back and travel down his legs and wasn't just in his hands and feet.
The steroid injection that he received, on Friday, has done wonders. I've only had to give him 4 mg. of Delaudid, a couple of times, for "break-through" pain.
Charlotte: For some reason, our Oncologist does not like to refer to MDA in Houston. He has had some unfortunate results (or rather, his patients have) at that facility.
I really doubt that Bob will choose the SCT route, if continuing maintenance Chemo will provide the same results. We are just going to investigate all options. Thanks for the suggestion of requesting success rates from UT Southwestern.
Sarah
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Sarah - Name: Sarah
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: October 7, 2010
- Age at diagnosis: 72
Re: M-Spike has plateaued
Sarah....did you eventually see Dr. Anderson? We are just starting to work with him at UTSW here in Dallas and I am trying to find out info on him and the center. So far we are very happy with our experience there, but digging is in my blood. Thanks, Jennifer
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getmombetter - Name: Jennifer Reese-Sherrill
- Who do you know with myeloma?: my mom
- When were you/they diagnosed?: March 2012
- Age at diagnosis: 70
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