Hello Nancy,
Thanks for your info on the Revlimid and your experiences. I have always believed in questioning everything and take an active interest in my condition. One good thing is that I have slowed down and had time to 'smell the roses' and work out what is important in my life.
Best of luck with your continuing treatment. Jennifer
Forums
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redcarnation - Name: Jennifer
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: 2004
- Age at diagnosis: 49
Re: Velcade vs. Revlimid - how do they compare?
Jennifer,
I would like to back up the points that JimNY made. After three years of reading the Beacon, I have seen that side effect responses to Velcade, Revlimid, and other treatments can vary quite a bit from individual to individual. While I feel it is valuable to read about the experience of others to educate and prepare yourself for what may happen and how to deal with it, it would be a mistake to draw conclusions of what your experience will be from those of others. It would be especially detrimental to not try a treatment that would be effective based out of fears of side effects from other people’s experiences with that treatment.
I would like to back up the points that JimNY made. After three years of reading the Beacon, I have seen that side effect responses to Velcade, Revlimid, and other treatments can vary quite a bit from individual to individual. While I feel it is valuable to read about the experience of others to educate and prepare yourself for what may happen and how to deal with it, it would be a mistake to draw conclusions of what your experience will be from those of others. It would be especially detrimental to not try a treatment that would be effective based out of fears of side effects from other people’s experiences with that treatment.
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Eric Hofacket - Name: Eric H
- When were you/they diagnosed?: 01 April 2011
- Age at diagnosis: 44
Re: Velcade vs. Revlimid - how do they compare?
Hi Jennifer. First, let me say I'm sorry your light chains are going up again. I just went through the same thing, except with lambda light chains, for the past 6 months.
I agree with Eric and JimNY about finding out which treatment will work best for you. Sometimes I read discussions about side effects that I never had, and other times, I find myself nodding in agreement as I read a posting on the Beacon.
I took Revlimid as my first maintenance drug after my transplant. I couldn't handle it. It knocked my red and white blood cell counts for a loop, and my oncologist eventually took me off.
When my lambda light chains started to increase last June, my oncologist put me on subcutaneous Velcade injections. I had 6 cycles, with minimal side effects and no neuropathy. I think it is going to become my maintenance drug.
Dana A
I agree with Eric and JimNY about finding out which treatment will work best for you. Sometimes I read discussions about side effects that I never had, and other times, I find myself nodding in agreement as I read a posting on the Beacon.
I took Revlimid as my first maintenance drug after my transplant. I couldn't handle it. It knocked my red and white blood cell counts for a loop, and my oncologist eventually took me off.
When my lambda light chains started to increase last June, my oncologist put me on subcutaneous Velcade injections. I had 6 cycles, with minimal side effects and no neuropathy. I think it is going to become my maintenance drug.
Dana A
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darnold - Name: Dana Arnold
- Who do you know with myeloma?: self
- When were you/they diagnosed?: May 2009
- Age at diagnosis: 52
Re: Velcade vs. Revlimid - how do they compare?
Thank you Eric for your comments. I read most of the blood cancer journal articles on myeloma to keep up with treatments and the research, but what they don't tell you are the personal experiences of other people with myeloma. This forum for me is invaluable for this. And, of course, I would not base my possible side effects on what others experience. I know all the side effects that I experienced on Velcade for the both times I was on it, so I guess I am really wanting to know more about Revlimid.
Thanks Dana for sharing your experiences. Much appreciated and that is great that you had minimal side effects from your last Velcade treatment of the 6 cycles. My next haematology appointment comes up soon, so I will see what happens regarding my treatment. Wishing you all the best Dana.
Jennifer
Thanks Dana for sharing your experiences. Much appreciated and that is great that you had minimal side effects from your last Velcade treatment of the 6 cycles. My next haematology appointment comes up soon, so I will see what happens regarding my treatment. Wishing you all the best Dana.
Jennifer
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redcarnation - Name: Jennifer
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: 2004
- Age at diagnosis: 49
Re: Velcade vs. Revlimid - how do they compare?
Hi,
You may want to do a Google search on Revlimid, kidney failure, and research.
There seems to be a 50/50 chance of kidney failure based on some of the research I have been reading.
I also unfortunately have some real life experience with Revlimid and permanent full kidney failure.
Start out with a low dosage if you choose Revlimid and have time.
You may want to do a Google search on Revlimid, kidney failure, and research.
There seems to be a 50/50 chance of kidney failure based on some of the research I have been reading.
I also unfortunately have some real life experience with Revlimid and permanent full kidney failure.
Start out with a low dosage if you choose Revlimid and have time.
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RandyHere
Re: Velcade vs. Revlimid - how do they compare?
Hello RandyHere,
I've seen several of your postings here in the forum, reporting on what happened to your father when he was treated with Revlimid, and discussing potential kidney-related side effects of Revlimid.
I'm very sorry your father suffered kidney failure after being treated with Revlimid. I'm sure what has happened has been a big shock to him and to all in your family.
However, the anger you feel because of what happened to your father doesn't justify your making outrageous claims like "There seems to be a 50/50 chance of kidney failure" during treatment with Revlimid. That's just patently false.
The official, FDA-approved prescribing information for Revlimid contains an exhaustive list of the drug's potential side effects. It also contains so-called "black box" warnings for particularly dangerous side effects the drug can have. There are drugs that have "black box" warnings based on just a few isolated cases of particularly serious drug side effects.
Potential kidney failure is not listed in Revlimid's "black box" warnings. In addition, kidney failure is only rarely reported as a side effect in the long list of side effects experienced by patients in the clinical trials that have tested the drug. If you don't believe me, you can check out the document yourself at the FDA website:
http://www.accessdata.fda.gov/drugsatfda_docs/label/2014/021880s039s040lbl.pdf
Yes, it's true that Revlimid's dose is supposed to be adjusted in patient's who have reduced kidney function. That is well known and spelled out in the official prescribing information. If your father's kidney function was fine prior to his treatment, there is nothing unusual about his having received a full dose of the drug when he started treatment.
The particularly unfortunate thing in your father's case is that he most likely suffered kidney failure because Revlimid was especially effective in treating his myeloma. The Revlimid treatment probably created what is known as "tumor lysis syndrome", which happens when a drug kills off cancer cells so quickly and so thoroughly that the patient's kidneys are overburdened removing all the dead cells from the body.
I hope your father is able to recover much of his kidney function. I also hope your anger and hurt about what happened eventually subsides enough that you can recognize the real harm you can do by spreading misinformation about a drug that has proven itself very useful in the treatment of multiple myeloma.
I've seen several of your postings here in the forum, reporting on what happened to your father when he was treated with Revlimid, and discussing potential kidney-related side effects of Revlimid.
I'm very sorry your father suffered kidney failure after being treated with Revlimid. I'm sure what has happened has been a big shock to him and to all in your family.
However, the anger you feel because of what happened to your father doesn't justify your making outrageous claims like "There seems to be a 50/50 chance of kidney failure" during treatment with Revlimid. That's just patently false.
The official, FDA-approved prescribing information for Revlimid contains an exhaustive list of the drug's potential side effects. It also contains so-called "black box" warnings for particularly dangerous side effects the drug can have. There are drugs that have "black box" warnings based on just a few isolated cases of particularly serious drug side effects.
Potential kidney failure is not listed in Revlimid's "black box" warnings. In addition, kidney failure is only rarely reported as a side effect in the long list of side effects experienced by patients in the clinical trials that have tested the drug. If you don't believe me, you can check out the document yourself at the FDA website:
http://www.accessdata.fda.gov/drugsatfda_docs/label/2014/021880s039s040lbl.pdf
Yes, it's true that Revlimid's dose is supposed to be adjusted in patient's who have reduced kidney function. That is well known and spelled out in the official prescribing information. If your father's kidney function was fine prior to his treatment, there is nothing unusual about his having received a full dose of the drug when he started treatment.
The particularly unfortunate thing in your father's case is that he most likely suffered kidney failure because Revlimid was especially effective in treating his myeloma. The Revlimid treatment probably created what is known as "tumor lysis syndrome", which happens when a drug kills off cancer cells so quickly and so thoroughly that the patient's kidneys are overburdened removing all the dead cells from the body.
I hope your father is able to recover much of his kidney function. I also hope your anger and hurt about what happened eventually subsides enough that you can recognize the real harm you can do by spreading misinformation about a drug that has proven itself very useful in the treatment of multiple myeloma.
Re: Velcade vs. Revlimid - how do they compare?
Thank you, RandyHere, for your comments and experiences. As mentioned earlier, I like hearing from everyone and all comments are welcome.
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redcarnation - Name: Jennifer
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: 2004
- Age at diagnosis: 49
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