After 2 years watching my smoldering myeloma I was told that I have to start treatment in Sept. I was diagnosed 2 years ago at the time I was diagnosed with stage 3 breast cancer. After chemo, surgery and radiation, I am in remission for the BC. I've been followed at Little Rock foe the last 1 1/2 years and because they say I'm high risk and have already had chemo, they want to start now with VTD-PACE, transplant, and VRD maintence. I'm 69 and healthy
I am wondering what kind of side effects I will have and when. What will the VTD-PACE do to me? I gather I will lose my hair again - no problem, I liked being bald. Less sure about the rest, steroids and velcaid. I already have some neurophy from breast chemo. I'm hearing about mouth sores. When and from what? The previous chemo cause severe neutropenia, anemia requiring blood and some neurophy. Other than that, not too bad. But this sounds more scary.
I woul appreciate any info you can pass on. I'm someone who does better when they know what's going on.
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Msmulberry - Who do you know with myeloma?: Myself
- When were you/they diagnosed?: 2010
- Age at diagnosis: 67
Re: Starting treatment: VTD-PACE Plus VRD
The mouth sores I had are from the revilmid. It is almost like having a sunburn in your mouth. Most food "burns" as if coated in hot sauce. I just eat mild food and now I can tolerate the reaction. But the most annoying side effect is the lack of energy. I get so worn out so quickly. Now I am fighting another blood clot in my calf.
Just remember, yor Dr. Wants you comfortable, and new drugs are coming on, so there is something for you. I send you the best!
Just remember, yor Dr. Wants you comfortable, and new drugs are coming on, so there is something for you. I send you the best!
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Mary Degenkolb - Name: Mary Degenkolb
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 2011
- Age at diagnosis: 54
Re: Starting treatment: VTD-PACE Plus VRD
Dear Msmulberry,
Is your disease high-risk smoldering myeloma? If so, what makes it high risk? Are the myeloma numbers gradually increasing over time or are they stable? Or, have your doctors diagnosed you with full blown symptomatic myeloma?
Pete V.
Is your disease high-risk smoldering myeloma? If so, what makes it high risk? Are the myeloma numbers gradually increasing over time or are they stable? Or, have your doctors diagnosed you with full blown symptomatic myeloma?
Pete V.
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Dr. Peter Voorhees - Name: Peter Voorhees, M.D.
Beacon Medical Advisor
Re: Starting treatment: VTD-PACE Plus VRD
Thank you for you help Dr. Voorhees.
I apparently now have full-blown myeloma. From last report:
When she started her chemo for breast cancer her IgG dropped from 2400 to 800. Now there has been gradual serial increase in her IgG which is persistent ......having a progressive increase in the IgG from 2200 to 3600 most recently and spike is climbing from 1.6 to 2. Hemogoblobin is dropping from 13.2 to 10.6. She does now have CRAB features and meets criteria for treatment. She also has shortness of breath. The other concern is that this myeloma is present on the back of prior treatment with adriamycian and cyclophamide. In addition she had a hypodiploid karyotype with abnormalities of chromosome 1q, high- risk gene expression profile suggesting that the disease might be more genomically unstable. In other words, waiting could lead to further clonal evolution and potentially produce a more aggressive disease.
I am wondering how soon and how much I will be effected. How much help will I need? I see patients at the clinic in wheel chairs looking wiped out. I am not at all happy about VTD as I already have some neuropathy from previous chemo and I don't like what I have read about the D part.
I apparently now have full-blown myeloma. From last report:
When she started her chemo for breast cancer her IgG dropped from 2400 to 800. Now there has been gradual serial increase in her IgG which is persistent ......having a progressive increase in the IgG from 2200 to 3600 most recently and spike is climbing from 1.6 to 2. Hemogoblobin is dropping from 13.2 to 10.6. She does now have CRAB features and meets criteria for treatment. She also has shortness of breath. The other concern is that this myeloma is present on the back of prior treatment with adriamycian and cyclophamide. In addition she had a hypodiploid karyotype with abnormalities of chromosome 1q, high- risk gene expression profile suggesting that the disease might be more genomically unstable. In other words, waiting could lead to further clonal evolution and potentially produce a more aggressive disease.
I am wondering how soon and how much I will be effected. How much help will I need? I see patients at the clinic in wheel chairs looking wiped out. I am not at all happy about VTD as I already have some neuropathy from previous chemo and I don't like what I have read about the D part.
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Msmulberry - Who do you know with myeloma?: Myself
- When were you/they diagnosed?: 2010
- Age at diagnosis: 67
Re: Starting treatment: VTD-PACE Plus VRD
Dear Msmulberry,
With the rapid increase in your IgG and M spike after an initial response to cyclophosphamide and doxorubicin (Adriamycin) for breast cancer, the onset of anemia, and high risk gene expression profile, I agree with moving forward with myeloma therapy.
You are at greater risk of neuropathy given your previous history (I am assuing you received taxol previously). You might want to inquire about administering the Velcade subcutaneously rather than IV. This has been shown to reduce the risk of neuropathy. The thalidomide dosing is not terribly high in this protocol, and thalidomide is no longer used in the maintenance portion of total therapy protocols at the University of Arkansas (it has been replaced with lenalidomide, or Revlimid, which carries a lower risk of neuropathy).
You will lose your hair with the VDT-PACE (the PACE part of the therapy will do this). As before, it will grow back but not until after transplant. You will definitely feel tired, your blood counts will drop, and transfusions may be required. The risk of infection is higher with this regimen than what you had for your breast cancer, so be sure to get checked out right away if you have any signs/symptoms worrisome for a brewing infection. Shingles is common on velcade-based therapy. Your physicians at Arkansas will place you on something to prevent this from happening. Mouth sores can occur with VDT-PACE but most of the patients that we have had on this regimen do not get them, or not to a meaningful degree. Mouth sores are much more common with the high-dose melphalan chemotherapy that is administered as part of the stem cell transplant procedure. Gastrointestinal effects (loss of appetite, things tasting funny, nausea, diarrhea) are also seen with the VDT-PACE therapy. The patients on this site can tell you about the wonders of steroids (dex) and the insomnia, fluid retention, weight gain, mood changes, etc that they cause.
VRD maintenance will be easier to handle and things will start getting better at that point.
Best of luck with all of this. There will definitely be hurdles along the way, but the group at Arkansas is highly knowledgeable and experienced shepherding people through this process.
Take care!
Pete V.
With the rapid increase in your IgG and M spike after an initial response to cyclophosphamide and doxorubicin (Adriamycin) for breast cancer, the onset of anemia, and high risk gene expression profile, I agree with moving forward with myeloma therapy.
You are at greater risk of neuropathy given your previous history (I am assuing you received taxol previously). You might want to inquire about administering the Velcade subcutaneously rather than IV. This has been shown to reduce the risk of neuropathy. The thalidomide dosing is not terribly high in this protocol, and thalidomide is no longer used in the maintenance portion of total therapy protocols at the University of Arkansas (it has been replaced with lenalidomide, or Revlimid, which carries a lower risk of neuropathy).
You will lose your hair with the VDT-PACE (the PACE part of the therapy will do this). As before, it will grow back but not until after transplant. You will definitely feel tired, your blood counts will drop, and transfusions may be required. The risk of infection is higher with this regimen than what you had for your breast cancer, so be sure to get checked out right away if you have any signs/symptoms worrisome for a brewing infection. Shingles is common on velcade-based therapy. Your physicians at Arkansas will place you on something to prevent this from happening. Mouth sores can occur with VDT-PACE but most of the patients that we have had on this regimen do not get them, or not to a meaningful degree. Mouth sores are much more common with the high-dose melphalan chemotherapy that is administered as part of the stem cell transplant procedure. Gastrointestinal effects (loss of appetite, things tasting funny, nausea, diarrhea) are also seen with the VDT-PACE therapy. The patients on this site can tell you about the wonders of steroids (dex) and the insomnia, fluid retention, weight gain, mood changes, etc that they cause.
VRD maintenance will be easier to handle and things will start getting better at that point.
Best of luck with all of this. There will definitely be hurdles along the way, but the group at Arkansas is highly knowledgeable and experienced shepherding people through this process.
Take care!
Pete V.
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Dr. Peter Voorhees - Name: Peter Voorhees, M.D.
Beacon Medical Advisor
Re: Starting treatment: VTD-PACE Plus VRD
This is very helpful. Thank you
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Msmulberry - Who do you know with myeloma?: Myself
- When were you/they diagnosed?: 2010
- Age at diagnosis: 67
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