At the moment of diagnosis I had a lot of information about the success current treatments were having with multiple myeloma, so when the doctor confirmed the disease and recommended treatment I said yes . That was my choice. Based on how aggressive multiple myeloma is and the advances in how it reacts to treatment, I thought it was the smartest thing to do ... and I still do.
Simultaneously I decided that I would make my diet and lifestyle even healthier and went for an all plant-based and organic diet to help my body deal w the new toxins I was introducing it to.
As of today I am 10 weeks into VCD (CyBorD) and not seeing any drops in my numbers and I my kidney function is going down. So I am interested in other alternative ideas for treatment in addition to other forms of conventional treatment others may have. My doctor plan was to prep me for stem cell transplant (SCT) but with me not responding at all now he is mentioning adding Revlimid.
Will the addition of Revlimid affect a possible SCT?
Does anyone have any new protocols - alternative or conventional - that they can suggest?
Forums
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blayz - Who do you know with myeloma?: Self
- When were you/they diagnosed?: November 2013
- Age at diagnosis: 45
Re: No response to VCD (CyBorD) - what to do next?
I would certainly think a change would be in order. You don't mention whether or not you were also taking a steroid?
I believe that in some instances they combine Revlimid with Velcade.
I'm coming out of remission and my doctor indicated there were a couple of new drugs besides those two, but he didn't give me any details or names.
I believe that in some instances they combine Revlimid with Velcade.
I'm coming out of remission and my doctor indicated there were a couple of new drugs besides those two, but he didn't give me any details or names.
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Wayne K - Name: Wayne
- Who do you know with myeloma?: Myself, my sister who passed in '95
- When were you/they diagnosed?: 03/09
- Age at diagnosis: 70
Re: No response to VCD (CyBorD) - what to do next?
Hi Wayne.
Yes, my treatment consists of a Velcade (Bortezomib ) injection, Cytosin IV and oral Dexamethansone, once a week. For the moment there are no other drugs on my list that are related to my treamtment, just some supplements, and the occasional pain killer.
Yes, my treatment consists of a Velcade (Bortezomib ) injection, Cytosin IV and oral Dexamethansone, once a week. For the moment there are no other drugs on my list that are related to my treamtment, just some supplements, and the occasional pain killer.
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blayz - Who do you know with myeloma?: Self
- When were you/they diagnosed?: November 2013
- Age at diagnosis: 45
Re: No response to VCD (CyBorD) - what to do next?
My induction prior to my auto transplant was Velcade, Dex and Revlimid. I think it's pretty common but that there are many options. Do you have access to a myeloma specialist?
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Joy - Name: Joy
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: May 2013
- Age at diagnosis: 52
Re: No response to VCD (CyBorD) - what to do next?
Hi Joy.
My doctor has access to him, consults with him but he is not a part of my hospital system. So I am looking to pick up another insurance that will let me be seen by him at his hospital.
My doctor has access to him, consults with him but he is not a part of my hospital system. So I am looking to pick up another insurance that will let me be seen by him at his hospital.
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blayz - Who do you know with myeloma?: Self
- When were you/they diagnosed?: November 2013
- Age at diagnosis: 45
Re: No response to VCD (CyBorD) - what to do next?
Hi Blayz,
You will probably feel better and maybe get more answers if you are able to speak directly with a specialist .
I have a specialist and a local oncologist. I like being able to see two different doctors. My local oncologist is highly qualified but generally defers to my specialist since his entire career is about myeloma. However, the local guy brings a much more human factor.
Hopefully you'll be able to work something out. If your numbers are not getting better, I wouldn't hesitate to push for other drug options.
I just always remember that no matter how good your doctor is, the patient is one of many to them, while they're the only connection we really have as our gateway. Everyone seems to have a slightly different version of this weird disease and if something isn't working, probably something else will.
I wish you all the best in your treatment.
You will probably feel better and maybe get more answers if you are able to speak directly with a specialist .
I have a specialist and a local oncologist. I like being able to see two different doctors. My local oncologist is highly qualified but generally defers to my specialist since his entire career is about myeloma. However, the local guy brings a much more human factor.
Hopefully you'll be able to work something out. If your numbers are not getting better, I wouldn't hesitate to push for other drug options.
I just always remember that no matter how good your doctor is, the patient is one of many to them, while they're the only connection we really have as our gateway. Everyone seems to have a slightly different version of this weird disease and if something isn't working, probably something else will.
I wish you all the best in your treatment.
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Joy - Name: Joy
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: May 2013
- Age at diagnosis: 52
Re: No response to VCD (CyBorD) - what to do next?
My Dad was initially on VTD for several cycles until eventually his numbers got stuck. Doctor switched his regime to VCD for two cycles but his numbers progressed up. Then he switched him back to VTD with 100mg Thalidomide (from 50mg) and slightly increase his Velcade dosage from 1.3mg/m2 (Doc said he just rounded the number up to the nearest tenth... it ended up being 0.1mg higher than the previous dose). His numbers dropped again.
My Doc is anti-Revlimid; he argues that the research about the drug is still limited; he prefers Thalidomide.
Just some insight... Hang in there.
My Doc is anti-Revlimid; he argues that the research about the drug is still limited; he prefers Thalidomide.
Just some insight... Hang in there.
Re: No response to VCD (CyBorD) - what to do next?
I agree that additional therapy is needed. If the kidney function is changing it makes Revlimid harder to use but there are pretty standard guidelines for dosing based on kidney function.
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Dr. Jason Valent - Name: Jason Valent, M.D.
Beacon Medical Advisor
Re: No response to VCD (CyBorD) - what to do next?
I did not do well on Velcade. Whilst it did zap the protein level nicely down, I only lasted 3 cycles before I rapidly went downhill. After I had come off the treatment (it might have been after 5 cycles - I should have had 8 i think) it took me just over 3 months to properly recover. So I sympathise.
BUT please remember that all these treatments, whilst zapping multiple myeloma, do not cure it and what is being suggested is that you have all the top drugs on the first treatment. I would counsel against this, in that if you have all the drugs altogether, then what do you take in 2-3 years time when the myeloma inevitably comes back?
Most drugs do not work so well or at all the second time. In my case when I started a course of lenalidamide (Revlimid) + steroid dexamethasone as my third treatment since being diagnosed in Jan 2008, it was only then that they discovered that my adrenal glands had been destroyed by the dexamethasone when I had Velcade.
I was detoxified and have ever since had to take 3 1/2 pills a day hydrocortisone which gives me synthetic adrenaline. I then was put back on a lower dose of Revlimid and only 1 small pill dexamethasone every other day and all is well! I am now on Cycle 17 and I feel really good!
So before discarding Velcade I would talk with your haematologist about changing the cocktail i.e. smaller dose of Velcade (when I had it we had it twice a week - now I think they think 2 a week is over the top and now people only have 1 shot of Velcade a week. I wish I had that I might have lasted much better on that! But maybe a lower/higher dose of steroid (dexamethasone) might also help.
If I were you I would leave Revlimid for another lot of treatment. I expect my Revlimid to only last 2 years, so late summer I should see my protein levels starting to climb? Then what? I have had cyclophosphamide and thalidomide in the first treatment, Velcade in the second and Revlimid in the third and with all treatments some steroid (dexamethasone). These are all the main drugs. What can I have for the fourth treatment? We shall see - I am sure there is an answer! But don't rush in and have them all immediately.
My kidneys are not that good - creatinine content of blood tests have been about 150 - 190 for the last 5 1/2 years, but I have been able to endure the treatments - by getting the cocktail right. so perhaps not that large a change of dosages, could make a seriously better result!
Anyway good luck! Brian O
BUT please remember that all these treatments, whilst zapping multiple myeloma, do not cure it and what is being suggested is that you have all the top drugs on the first treatment. I would counsel against this, in that if you have all the drugs altogether, then what do you take in 2-3 years time when the myeloma inevitably comes back?
Most drugs do not work so well or at all the second time. In my case when I started a course of lenalidamide (Revlimid) + steroid dexamethasone as my third treatment since being diagnosed in Jan 2008, it was only then that they discovered that my adrenal glands had been destroyed by the dexamethasone when I had Velcade.
I was detoxified and have ever since had to take 3 1/2 pills a day hydrocortisone which gives me synthetic adrenaline. I then was put back on a lower dose of Revlimid and only 1 small pill dexamethasone every other day and all is well! I am now on Cycle 17 and I feel really good!
So before discarding Velcade I would talk with your haematologist about changing the cocktail i.e. smaller dose of Velcade (when I had it we had it twice a week - now I think they think 2 a week is over the top and now people only have 1 shot of Velcade a week. I wish I had that I might have lasted much better on that! But maybe a lower/higher dose of steroid (dexamethasone) might also help.
If I were you I would leave Revlimid for another lot of treatment. I expect my Revlimid to only last 2 years, so late summer I should see my protein levels starting to climb? Then what? I have had cyclophosphamide and thalidomide in the first treatment, Velcade in the second and Revlimid in the third and with all treatments some steroid (dexamethasone). These are all the main drugs. What can I have for the fourth treatment? We shall see - I am sure there is an answer! But don't rush in and have them all immediately.
My kidneys are not that good - creatinine content of blood tests have been about 150 - 190 for the last 5 1/2 years, but I have been able to endure the treatments - by getting the cocktail right. so perhaps not that large a change of dosages, could make a seriously better result!
Anyway good luck! Brian O
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BrianO
Re: No response to VCD (CyBorD) - what to do next?
Thanks to all of you for your replies and support.
When my doctor and I sat down we talked about the path he thought was best and since it included my having an SCT it was agreed that the VCD (CyBorD) approach was the best path. At the time it was also what was most successful for patients that were being considered for a transplant.
I am not against any of the choices nor am I prepared to totally abandon the treatment we chose, I am just a little surprised that my body is not responding and none of the numbers are dropping. I am a realist, I understand that this is not a sprint to fast results, but with the pace that multiple myeloma can take in your body there are times when I see these results and get a little impatient. But I guess as long as they are not CLIMBING then I can be at least take solace in that.
When my doctor and I sat down we talked about the path he thought was best and since it included my having an SCT it was agreed that the VCD (CyBorD) approach was the best path. At the time it was also what was most successful for patients that were being considered for a transplant.
I am not against any of the choices nor am I prepared to totally abandon the treatment we chose, I am just a little surprised that my body is not responding and none of the numbers are dropping. I am a realist, I understand that this is not a sprint to fast results, but with the pace that multiple myeloma can take in your body there are times when I see these results and get a little impatient. But I guess as long as they are not CLIMBING then I can be at least take solace in that.
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blayz - Who do you know with myeloma?: Self
- When were you/they diagnosed?: November 2013
- Age at diagnosis: 45
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