My mum who will be 71 in August has had myeloma for 6 years now and it's been a battle, but she's a fighter. However, at this point she has been given a last-resort chemo as everything else has stopped working. However, 6 months down line and working really well, they are threatening to stop it as it's lowering her heart rate.
Can they not reduce dose or can anyone think of something I can suggest?
Her last appointment I said, so, in other words you're gonna leave her to die, and the cancer nurse said that it's 6 of one and 1/2 dozen of other, as her heart could suddenly stop. But mum is great. She hasn't had no treatment for 6 weeks as they are holding it back until they do ecg, MRI, etc. However, for a few months, she's been complaining of neck pain. Hence the MRI.
What can I do or suggest?
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Re: Alternative to halting treatment due to heart problems?
Hi Sazjo20,
I'm gathering from one of your other posts that you mom is currently on pomalidomide. I'm also guessing that you are in Europe since you mentioned the name "Imnovid". It would help to know what country your mom is in.
You don't mention what other drugs your mom has become refractory to. But there often many possible combinations of drugs that are available to refractory patients, depending on what she has been on before. This could also include re-using some of her previous multiple myeloma drugs in combination with one of the newer drugs. There are also clinical trials that one can consider. But access to a trial will depend on where your mom is located.
I'm not a doc, but regarding your mom's slowed heart rate (bradycardia), I think it really depends on the grade of bradycardia as to whether a specialist would consider lowering the pomalidomide dose as opposed to eliminating it altogether. At least a couple of folks that I have read about that have experienced bradycardia on pomalidomide have continued with their treatment, but I'm not sure what grade bradycardia they experienced in the first place.
I'm gathering from one of your other posts that you mom is currently on pomalidomide. I'm also guessing that you are in Europe since you mentioned the name "Imnovid". It would help to know what country your mom is in.
You don't mention what other drugs your mom has become refractory to. But there often many possible combinations of drugs that are available to refractory patients, depending on what she has been on before. This could also include re-using some of her previous multiple myeloma drugs in combination with one of the newer drugs. There are also clinical trials that one can consider. But access to a trial will depend on where your mom is located.
I'm not a doc, but regarding your mom's slowed heart rate (bradycardia), I think it really depends on the grade of bradycardia as to whether a specialist would consider lowering the pomalidomide dose as opposed to eliminating it altogether. At least a couple of folks that I have read about that have experienced bradycardia on pomalidomide have continued with their treatment, but I'm not sure what grade bradycardia they experienced in the first place.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Alternative to halting treatment due to heart problems?
We live in Belfast, Northern Ireland.
I am so afraid, but I am not willing to give up without a fight. My mum went and got her MRI today. Another thing that fears me so badly: could this mean the cancer has spread or perhaps a lesion on top of her spine?
There's no point in saying don't worry as worry is my middle name. My mum says she doesn't worry as I do the worrying for her. Love her so much!!
I am so afraid, but I am not willing to give up without a fight. My mum went and got her MRI today. Another thing that fears me so badly: could this mean the cancer has spread or perhaps a lesion on top of her spine?
There's no point in saying don't worry as worry is my middle name. My mum says she doesn't worry as I do the worrying for her. Love her so much!!
Re: Alternative to halting treatment due to heart problems?
Hello Sazjo:
I do not know if you are aware of the clinical trials in your area (I am not, sorry about that), however, if there is a trial with daratumamab (Darzalex), I would look at that, or alternatively, elotuzamab (Empliciti). These are not yet approved in Europe, but I understand are under active study in Europe. I believe I recall a Dublin poster not too long ago mentioning that he was considering a daratumumab trial. Also, if there is any other clinical trial with a monoclonal antibody (they would end in "mab"), I would look at that also, for example pembrolizumab.
Mab's have different side effects. Although some patients do have unpleasant reactions (some tolerate it quite well), the reactions are reported to be like allergic reactions, a.k.a., "infusion related". That is they are short lived, and do not appear to cause longer term issues like heart problems or peripheral neuropathy, and after the first infusion, they appear to die down after subsequent infusions.
Since you mentioned that your mom was a fighter, I would think she would not be scared away by the idea of clinical trial.
Good luck.
I do not know if you are aware of the clinical trials in your area (I am not, sorry about that), however, if there is a trial with daratumamab (Darzalex), I would look at that, or alternatively, elotuzamab (Empliciti). These are not yet approved in Europe, but I understand are under active study in Europe. I believe I recall a Dublin poster not too long ago mentioning that he was considering a daratumumab trial. Also, if there is any other clinical trial with a monoclonal antibody (they would end in "mab"), I would look at that also, for example pembrolizumab.
Mab's have different side effects. Although some patients do have unpleasant reactions (some tolerate it quite well), the reactions are reported to be like allergic reactions, a.k.a., "infusion related". That is they are short lived, and do not appear to cause longer term issues like heart problems or peripheral neuropathy, and after the first infusion, they appear to die down after subsequent infusions.
Since you mentioned that your mom was a fighter, I would think she would not be scared away by the idea of clinical trial.
Good luck.
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JPC - Name: JPC
Re: Alternative to halting treatment due to heart problems?
Hi Sazjo20,
I'm very sorry to hear about your mother's situation. You've gotten good information and advice from Multibilly and JPC. I just want to add a comment about my own experience.
In answer to one of your questions, I have had some cardiac issues related to Revlimid, including bradycardia. My oncologist reduced my Revlimid dose, and that has helped. So it seems like it might be something worth trying in your mother's case.
If you want more details about my situation, please see this posting that I just put up in a different forum thread.
Best wishes to your mother. Please keep us posted on how she is doing.
Mike
I'm very sorry to hear about your mother's situation. You've gotten good information and advice from Multibilly and JPC. I just want to add a comment about my own experience.
In answer to one of your questions, I have had some cardiac issues related to Revlimid, including bradycardia. My oncologist reduced my Revlimid dose, and that has helped. So it seems like it might be something worth trying in your mother's case.
If you want more details about my situation, please see this posting that I just put up in a different forum thread.
Best wishes to your mother. Please keep us posted on how she is doing.
Mike
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mikeb - Name: mikeb
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 2009 (MGUS at that time)
- Age at diagnosis: 55
Re: Alternative to halting treatment due to heart problems?
Treatment sent my husband into heart failure, although it worked excellently on his myeloma. He also had severe pre-existing cardiac issues. Anyway, they have been able to improve his heart function with a low dose of lisinopril. He did end up with an arrithmyia also, but adding a beta blocker has brought that under control.
Have they mentioned anything about trying to achieve some heart rate control through medications?
My husband has also been off treatment since late 2013, which may have also helped his heart to heal some.
Have they mentioned anything about trying to achieve some heart rate control through medications?
My husband has also been off treatment since late 2013, which may have also helped his heart to heal some.
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