Well, I have survived my first week of Revlimid, Velcade, and dexamethasone (RVD), plus Zometa, without too much trouble. The side effects so far are more peculiar than troubling. There is the Velcade rash, not painful or itchy. Some inability to sleep, paradoxically followed by great energy, bordering on the manic. Other times, a wooziness. Biggest problem is probably digestive system shut-down, but there are solutions for that.
My doc has mercifully started me off on pretty low doses due to my advanced age (80-ish) and my excessive fear of side effects: Revlimid 15 mg. each day and dexamethasone 20 mg. once a week. I suspect he may increase these if the side effects remain under control. I am grateful that so far I don't feel too bad.
Blood work after one week, which had been all normal before treatment started, showed several kinds of leukocytes taking a nose dive. I assume this is what is supposed to happen, and that it shows the drugs are having effects?
The most serious consequence of the myeloma for me so far have been the lytic lesions and resulting compression fractures in my spine, which greatly inhibits my physical abilities, e.g., I can only walk a block or two before I have to sit down. In a way, I am grateful for those fractures, because otherwise the myeloma would not have been caught so early and treatment begun before more damage to kidneys, etc.
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bodumene - Name: bodumene
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: January, 2017
Re: Survived first week of RVD
Hi Bodumene,
It is good that you are receiving the Revlimid, Velcade, and dexamethasone (RVD) regimen, it is a well tried and tested treatment for those newly diagnosed with myeloma, I believe it has been in use for around a decade and has improved and prolonged many lives. I had this treatment five years ago and it worked very well for me. The side effects can be those you have mentioned or different from one person to another, but for sure peripheral neuropathy is quite common, especially when the Velcade was given intravenously. You may find that it helps to adapt your diet at certain times during treatment, especially if your taste is affected. Your favorite meals can sometimes taste similar to roasted sawdust! Very off-putting!
As a non-professional I would say do not worry too much about the short term variations in your blood test results, as long as they are being monitored by your health professionals. For example the leukocytes you have mentioned, some of these numbers can change dramatically in just a few days, With myself, my monocytes went from 2477 down to 1300 in a week! What matters is the appearance of a trend over several weeks or even months. I am sure you will bring any concerns to the attention of your specialist at each appointment.
I hope you will soon notice some good benefits from your treatment, as most patients do. I am sure all Beacon subscribers would wish you all the best in the coming months ... and years.
Victor L
It is good that you are receiving the Revlimid, Velcade, and dexamethasone (RVD) regimen, it is a well tried and tested treatment for those newly diagnosed with myeloma, I believe it has been in use for around a decade and has improved and prolonged many lives. I had this treatment five years ago and it worked very well for me. The side effects can be those you have mentioned or different from one person to another, but for sure peripheral neuropathy is quite common, especially when the Velcade was given intravenously. You may find that it helps to adapt your diet at certain times during treatment, especially if your taste is affected. Your favorite meals can sometimes taste similar to roasted sawdust! Very off-putting!
As a non-professional I would say do not worry too much about the short term variations in your blood test results, as long as they are being monitored by your health professionals. For example the leukocytes you have mentioned, some of these numbers can change dramatically in just a few days, With myself, my monocytes went from 2477 down to 1300 in a week! What matters is the appearance of a trend over several weeks or even months. I am sure you will bring any concerns to the attention of your specialist at each appointment.
I hope you will soon notice some good benefits from your treatment, as most patients do. I am sure all Beacon subscribers would wish you all the best in the coming months ... and years.
Victor L
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Victor L - Name: Victor L
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: 2012
- Age at diagnosis: 58
Re: Survived first week of RVD
Victor,
Thank you for your feedback and good wishes.
I am now into my “off-week,” no drugs for a week in order to rest my body. Side effects have escalated, however, with zero sleep on the nights of the days I take dexamethasone, and extreme agitation for several days. My hands shake and cramp when I try to do anything, there is rash all over me, and I have huge quantities of intestinal gas.
On the other hand, after only two weeks of treatment, my M-spike is down to 1.2 g/dL, and my free kappa, which had been as high as 53.3 mg/dL before treatment, is now down to 20. IgG has also gone back into the normal range after being elevated for some time.
So I guess it's a trade-off. I would gladly put up with the side effects if this treatment can ultimately allow my crumbling vertebrae to heal. Thursday is my next meeting with the doc, and I will be pushing for something to ameliorate the side effects.
bodumene
Thank you for your feedback and good wishes.
I am now into my “off-week,” no drugs for a week in order to rest my body. Side effects have escalated, however, with zero sleep on the nights of the days I take dexamethasone, and extreme agitation for several days. My hands shake and cramp when I try to do anything, there is rash all over me, and I have huge quantities of intestinal gas.
On the other hand, after only two weeks of treatment, my M-spike is down to 1.2 g/dL, and my free kappa, which had been as high as 53.3 mg/dL before treatment, is now down to 20. IgG has also gone back into the normal range after being elevated for some time.
So I guess it's a trade-off. I would gladly put up with the side effects if this treatment can ultimately allow my crumbling vertebrae to heal. Thursday is my next meeting with the doc, and I will be pushing for something to ameliorate the side effects.
bodumene
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bodumene - Name: bodumene
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: January, 2017
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