Hello everyone,
My husband Rob, 58 years old, was diagnosed with multiple myeloma this past April. It has been hard for him to grasp that he has cancer, since he had no symptoms and felt fine at the time.
The myeloma was discovered during routine labs at the VA Hospital in Pittsburgh, Pennsylvania. His urine kappa free light chain level was 3910 and kappa / lambda free light chain ratio was 307.87. His serum kappa free light chain level was 915.19 and kappa / lambda free light chain ratio was 124.18.
After a bone marrow biopsy and a kidney biopsy, he was started on treatment, which included Velcade, prednisone, and Valtrex (valacyclovir). He completed two four-week cycles of this. Unfortunately, he did not respond as the doctor had hoped, so she added Cytoxan (cyclophosphamide). He is currently getting this combination of chemo weekly and there has been a decrease in his light chain levels. The doctor hopes to get him in to remission and then do a stem cell transplant.
Our concerns are whether this course of treatment sounds appropriate, as well as any thoughts or advice on what we can expect over the coming months, especially in regards to a transplant and the side effects of treatment.
Thanks for any comments or advice in advance.
Praying for all,
Forums
4 posts
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monheal - Name: Monica Ann
- Who do you know with myeloma?: Spouse
- When were you/they diagnosed?: May 2016
- Age at diagnosis: 58
Re: Does my husband's treatment seem appropriate?
Hello Monica,
The Valtrex your husband has been receiving is to prevent shingles from occurring. Shingles can occur as a side effect of Velcade treatment.
The Velcade-prednisone treatment your husband initially received is somewhat "mild" compared to what is common in the U.S. these days. Treatment more typically is a three-drug regimen, either Revlimid-Velcade-dexamethasone (RVD), or Velcade-cyclophosphamide-dexamethasone (CyBorD). There are cases where patients are treated with only two drugs. In those situations, the treatment is usually Revlimid and dexamethasone (RD) or Velcade and dexamethasone (VD).
Dexamethasone and prednisone are both corticosteroids. Prednisone is usually easier for people to tolerate than dex, but dex is generally viewed to be a more potent against myeloma than prednisone. That's why dex is used more often than prednisone in the U.S.
So your husband's doctor opted for a less intensive therapy than usual (2-drug instead of 3-drug regimen), and also for a less intensive steroid than usual (prednisone instead of dexamethasone).
Your doctor may have chosen this route for several reasons.
For example, did your husband have kidney issues at diagnosis? What was his creatinine level when he was diagnosed? Impaired kidney function is usually a reason to use less intensive therapy as initial treatment, and to avoid using Revlimid.
Your husband's doctor also may have been concerned about your husband's general health, and whether he might struggle with a three-drug regimen that includes dexamethasone.
Finally, the doctor may just feel that a less intensive approach is okay until lab results show that it is not enough, at which point the treatment can be intensified. That seems to be what happened, given that cyclophosphamide was added to your husband's treatment regimen after a couple of cycles.
You could always get a second opinion consultation with a myeloma specialist at, for example, Ohio State, or across Pennsylvania in Philadelphia at Penn, or down in Baltimore at Johns Hopkins.
In any case, I wish you and your husband well. Let us know if you have more questions, and keep us posted on how your husband is doing.
The Valtrex your husband has been receiving is to prevent shingles from occurring. Shingles can occur as a side effect of Velcade treatment.
The Velcade-prednisone treatment your husband initially received is somewhat "mild" compared to what is common in the U.S. these days. Treatment more typically is a three-drug regimen, either Revlimid-Velcade-dexamethasone (RVD), or Velcade-cyclophosphamide-dexamethasone (CyBorD). There are cases where patients are treated with only two drugs. In those situations, the treatment is usually Revlimid and dexamethasone (RD) or Velcade and dexamethasone (VD).
Dexamethasone and prednisone are both corticosteroids. Prednisone is usually easier for people to tolerate than dex, but dex is generally viewed to be a more potent against myeloma than prednisone. That's why dex is used more often than prednisone in the U.S.
So your husband's doctor opted for a less intensive therapy than usual (2-drug instead of 3-drug regimen), and also for a less intensive steroid than usual (prednisone instead of dexamethasone).
Your doctor may have chosen this route for several reasons.
For example, did your husband have kidney issues at diagnosis? What was his creatinine level when he was diagnosed? Impaired kidney function is usually a reason to use less intensive therapy as initial treatment, and to avoid using Revlimid.
Your husband's doctor also may have been concerned about your husband's general health, and whether he might struggle with a three-drug regimen that includes dexamethasone.
Finally, the doctor may just feel that a less intensive approach is okay until lab results show that it is not enough, at which point the treatment can be intensified. That seems to be what happened, given that cyclophosphamide was added to your husband's treatment regimen after a couple of cycles.
You could always get a second opinion consultation with a myeloma specialist at, for example, Ohio State, or across Pennsylvania in Philadelphia at Penn, or down in Baltimore at Johns Hopkins.
In any case, I wish you and your husband well. Let us know if you have more questions, and keep us posted on how your husband is doing.
Re: Does my husband's treatment seem appropriate?
Yes I agree the prednisone in lieu of dexamethasone is not very common. Is there a reason it was substituted? It is a milder steroid.
Also Velcade is usually given two days a week for a few weeks with a rest week before starting the next cycle. Again, you hear of some folks on a once per week regimen but there are usually accompanying health reasons for the reduced dose.
Also Velcade is usually given two days a week for a few weeks with a rest week before starting the next cycle. Again, you hear of some folks on a once per week regimen but there are usually accompanying health reasons for the reduced dose.
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lys2012 - Name: Alyssa
- When were you/they diagnosed?: 2010, Toronto, Canada
- Age at diagnosis: 32
Re: Does my husband's treatment seem appropriate?
His regimen, as others have noted, is not typical. Usually first line treatment is Velcade and dexamethasone Many people also get Revlimid, so they are on a 3-drug combo. Many patients get Zometa to prevent fractures, although there are some risks. Well, everything is risky.
Is his doctor a myeloma specialist or a general oncologist? If your resources and insurance allow it, I would recommend going to a myeloma specialist. There are a number of them out there. I see a local general oncologist and I get consultations from a myeloma specialist.
Regarding an autologous stem cell transplant, you should know that many myeloma specialists do not recommend them. You should do as much reading as you can about the pros and cons of transplants. I did not have one and have done okay; I was first diagnosed in 2010.
Multiple myeloma is a disease of ups and downs. I appear to be entering a flare-up now after several years of doing really well with apparently minimal myeloma activity. It's because of this relapse that I have re-subscribed to the Myeloma Beacon.
My conclusions;
Is his doctor a myeloma specialist or a general oncologist? If your resources and insurance allow it, I would recommend going to a myeloma specialist. There are a number of them out there. I see a local general oncologist and I get consultations from a myeloma specialist.
Regarding an autologous stem cell transplant, you should know that many myeloma specialists do not recommend them. You should do as much reading as you can about the pros and cons of transplants. I did not have one and have done okay; I was first diagnosed in 2010.
Multiple myeloma is a disease of ups and downs. I appear to be entering a flare-up now after several years of doing really well with apparently minimal myeloma activity. It's because of this relapse that I have re-subscribed to the Myeloma Beacon.
My conclusions;
- Everyone is different
- Different doctors have different treatment preferences
- There is no one right way to treat myeloma
- See a specialist for a 2nd opinion about treatment.
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BobD2010 - Name: BobD
- Who do you know with myeloma?: no one on the site now
- When were you/they diagnosed?: 2010
- Age at diagnosis: 67
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