Hi everyone,
Yesterday, I was told by my nurse practitioner that I had failed Revlimid and this was why the doctor recommended a new course of therapy with Darzalex (daratumumab), Velcade, and dexamethasone. This is a little hard to understand.
My first line therapy was radiation, Revlimid and dexamethasone. I was on this combination of drugs for about a year. Then, I elected to forgo maintenance therapy with any drugs. This was in the year of 2010.
Last year, March of 2015, my numbers started rising and I had a PET scan that revealed a single lesion on my left iliac crest, which was taken care of with cryoablation or cryosurgery.
Again my numbers went down to an acceptable range until a year later, this past March of 2016, they began to rise again. This time the PET scan revealed multiple lesion sites on the ribs, vertebra and femur where I had recently had hip replacement surgery.
Is it accurate to say I "failed" the drug? Had I been on maintenance therapy with Revlimid, I could accept that I failed the drug. I guess this is just a matter of semantics, but I believe it needs clarification for all of us multiple myeloma patients.
Additionally, I consulted other doctors who included Revlimid in my therapy!
What gives, guys and gals?
Best in battle,
Tom
Forums
8 posts
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tomhardy - Name: Tom Hardy
- Who do you know with myeloma?: self
- When were you/they diagnosed?: Jan. 2010
- Age at diagnosis: 63
Re: What does it mean to "fail" a drug?
Curmudgeon alert ...
Now why is it, do you suppose, that when a treatment doesn't help a patient, it's the PATIENT who fails, as if, well, the patient had some character flaw that fixed it so that he didn't deserve to have the drug 'succeed?"
So here we have, possibly, someone for whom Revlimid didn't work. So why doesn't the doctor tell it like it is, that the Revlimid failed to do the job?
Nope, 'the patient failed the drug."
Y'know, there's a lot in that statement – and idea – that should bother people. It should bother DOCTORS.
The fact that it doesn't bother doctors REALLY bothers me.
End curmudgeon alert.
Carry on ...
Now why is it, do you suppose, that when a treatment doesn't help a patient, it's the PATIENT who fails, as if, well, the patient had some character flaw that fixed it so that he didn't deserve to have the drug 'succeed?"
So here we have, possibly, someone for whom Revlimid didn't work. So why doesn't the doctor tell it like it is, that the Revlimid failed to do the job?
Nope, 'the patient failed the drug."
Y'know, there's a lot in that statement – and idea – that should bother people. It should bother DOCTORS.
The fact that it doesn't bother doctors REALLY bothers me.
End curmudgeon alert.
Carry on ...
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dianaiad - Who do you know with myeloma?: Me
- When were you/they diagnosed?: Officially...March 2013
- Age at diagnosis: 63
Re: What does it mean to "fail" a drug?
Hi Tom and Diana,
I think that what is meant by 'failing' a drug is that some of the myeloma clones have stopped being held back by the drug. There are apparently many different clones of myeloma, and eventually one drug or other will not work on keeping all of them at bay. Thus it is better to have several or even many different drugs available to treat myeloma, either singly or in tandem with another 'novel' agent (dexamethasone seems to be consistently used with the other drugs and is a steroid). The novel agent drugs are of different types, e. g. Revlimid is an immunomodulatory drug, as is Thalomid (thalidomide) and Pomalyst (pomalidomide, Imnovid); Velcade is a proteasome inhibitor; Darzalex is a monoclonal antibody.
I agree with you Diana that the semantics can be awkward when describing the action of a drug. It is not as if one had 'failed' an exam, and no blame is meant there. It is just that one or other drug isn't working anymore to hold back the myeloma cells, unfortunately.
I think that what is meant by 'failing' a drug is that some of the myeloma clones have stopped being held back by the drug. There are apparently many different clones of myeloma, and eventually one drug or other will not work on keeping all of them at bay. Thus it is better to have several or even many different drugs available to treat myeloma, either singly or in tandem with another 'novel' agent (dexamethasone seems to be consistently used with the other drugs and is a steroid). The novel agent drugs are of different types, e. g. Revlimid is an immunomodulatory drug, as is Thalomid (thalidomide) and Pomalyst (pomalidomide, Imnovid); Velcade is a proteasome inhibitor; Darzalex is a monoclonal antibody.
I agree with you Diana that the semantics can be awkward when describing the action of a drug. It is not as if one had 'failed' an exam, and no blame is meant there. It is just that one or other drug isn't working anymore to hold back the myeloma cells, unfortunately.
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Nancy Shamanna - Name: Nancy Shamanna
- Who do you know with myeloma?: Self and others too
- When were you/they diagnosed?: July 2009
Re: What does it mean to "fail" a drug?
Only athletes fail drug tests. 
Myeloma patients do not fail drugs.
I think the nurse practitioner was having a bad day and simply made a poor choice of words.
Joe
Myeloma patients do not fail drugs.
I think the nurse practitioner was having a bad day and simply made a poor choice of words.
Joe
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Wobbles - Name: Joe
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: June 2016
- Age at diagnosis: 67
Re: What does it mean to "fail" a drug?
I don't think she (the nurse practitioner) was thinking one way or the other. Having a patient 'fail a drug' or a treatment is standard medicalese.
And I was simply wearing my ornery old lady hat. Mind you, I still find the concept objectionable and indicative of a mindset in the medical profession that is a bit on the arrogant side.
Perhaps, if we patients pointed stuff like this out the light would dawn? I mean, I had a doc tell ME that I had 'failed a treatment' once. Bless her heart, I don't think she ever used that phrase again. To anybody. (grin)
As for me, I will continue to be the ornery old lady that the docs either hate to see come into the office, or else figure that I will provide the entertaining anecdote for dinner that evening. Either way works for me.
And I was simply wearing my ornery old lady hat. Mind you, I still find the concept objectionable and indicative of a mindset in the medical profession that is a bit on the arrogant side.
Perhaps, if we patients pointed stuff like this out the light would dawn? I mean, I had a doc tell ME that I had 'failed a treatment' once. Bless her heart, I don't think she ever used that phrase again. To anybody. (grin)
As for me, I will continue to be the ornery old lady that the docs either hate to see come into the office, or else figure that I will provide the entertaining anecdote for dinner that evening. Either way works for me.
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dianaiad - Who do you know with myeloma?: Me
- When were you/they diagnosed?: Officially...March 2013
- Age at diagnosis: 63
Re: What does it mean to "fail" a drug?
Dianaiad,
Bravo for taking issue with the semantics that are used with any kind of condition. One thing that I learned well when I was in PT school was to not call someone a paraplegic or a cancer patient, etc. The more appropriate way of referring to someone with a condition is to say, " A person with paraplegia or a person with cancer, etc."
We don't fail drugs, the drugs fail us.
Continue being the ornery old lady. All curmudgeons unite!
Nancy in Phila
Bravo for taking issue with the semantics that are used with any kind of condition. One thing that I learned well when I was in PT school was to not call someone a paraplegic or a cancer patient, etc. The more appropriate way of referring to someone with a condition is to say, " A person with paraplegia or a person with cancer, etc."
We don't fail drugs, the drugs fail us.
Continue being the ornery old lady. All curmudgeons unite!
Nancy in Phila
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NStewart - Name: Nancy Stewart
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 3/08
- Age at diagnosis: 60
Re: What does it mean to "fail" a drug?
Absolutely, Nancy!
I'm going to get the t-shirt and wear it proudly!
CURMUDGEONS, UNITE!
I'm going to get the t-shirt and wear it proudly!
CURMUDGEONS, UNITE!
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dianaiad - Who do you know with myeloma?: Me
- When were you/they diagnosed?: Officially...March 2013
- Age at diagnosis: 63
Re: What does it mean to "fail" a drug?
The better term is refractory or resistant. It is not the patient, it is his or her myeloma that has become resistant or refractory to Revlimid.
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Ron Harvot - Name: Ron Harvot
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: Feb 2009
- Age at diagnosis: 56
8 posts
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