Hello,
I hope everyone is well today.
My Mum (60 years old) has IgA lambda light chain multiple myeloma.
A brief timeline -
2007 - Diagnosed with MGUS (although not told the significance of this or that it may turn into multiple myeloma):
February 2012 - Told her multiple myeloma was now symptomatic and must begin treatment ASAP. Paraprotein levels were around 40ish at the time. Mum had no real symptoms. Mum declined conventional treatment for as long as possible and managed her multiple myeloma by doing a mixture of alternative therapies (i.e., raw food and veggie diet, supplements, homeopathy, acupuncture and so on).
April / May 2014 - Mum had x4 10-15 min sessions over 4 days of radiotherapy on her spine due to some collections of multiple myeloma that were pressing on the nerves on her back. No side effects - although she was taking curcumin/turmeric throughout.
April / May 2015 - Mum's paraprotein had risen over the 3 years without conventional treatment to around 70ish g/L (7.0 g/dL) and her lambda light chains were around 3,000. Haemoglobin had dropped to under 8 and Mum was dependent on transfusions. Her creatinine went up to 300 / 400. As a result - she did x4 cycles of Velcade and dex. She achieved a very good partial response - paraprotein down to 2/3 g/L (0.66 g/dl) – basically a trace – and kappa/lambda ratio normal. No major side effects - although Mum took curcumin / turmeric throughout and only took half the prescribed amount of dex. Mum got 12 months remission from the Velcade and dex, but the myeloma is back again now.
June 2016 - Mum's paraprotein is back up to 70ish. Her haemoglobin is back down to below 8 and she's had a few blood transfusions, although she has been prescribed epo,which seems to be working again (she also took epo before and at the beginning of the Velcade and dex treatment, but stopped taking it when the treatment started working).
So it seems Mum must decide on what her next course of treatment will be.
She has been offered 2 options:
(1) Cyclophosphamide, thalidomide, and dexamethasone (CTD) and proceed to stem cell transplant (Mum only wants to do a stem cell transplant as a last resort); or
2) A trial of Kyprolis, cyclophosphamide, and dex?
What do people think? Would welcome thoughts / suggestions.
Thanks so much,
Lex X
Forums
6 posts
• Page 1 of 1
Re: Kyprolis, cyclophosphamide and dex trial?
Hello Lex,
Just sounds like you are in the UK. I don't know enough to be able to say the best answer, however, I can say that results from Kyprolis so far are quite good, and that should be a very viable option that you should look into deeper. In order to tolerate Kyprolis, your lungs and heart should be in good shape. If not, there is a risk factor. My wife is on Kyprolis consolidation right now, and is tolerating it very well.
Good luck.
Just sounds like you are in the UK. I don't know enough to be able to say the best answer, however, I can say that results from Kyprolis so far are quite good, and that should be a very viable option that you should look into deeper. In order to tolerate Kyprolis, your lungs and heart should be in good shape. If not, there is a risk factor. My wife is on Kyprolis consolidation right now, and is tolerating it very well.
Good luck.
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JPC - Name: JPC
Re: Kyprolis, cyclophosphamide and dex trial?
Hi Lex,
Sorry to hear that your mother is suffering with multiple myeloma, but it sounds like she has done the best she can to manage it, even though now she needs more treatments.
Between thalidomide and Kyprolis (the other two drugs are the same), I think that you should thoroughly read up on any potential side effects that might be incurred. You can use the Beacon's search for the forum and for the rest of the site to do that. My impression of thalidomide, although I have not tried it, is that it can cause peripheral neuropathy of a more severe nature than some of the newer drugs do. Would she be able to take Revlimid instead of thalidomide? Those two drugs are in the same category of immunomodulatory agents.
How old is your mother and what is the 'cut off' age for stem cell transplants where you live? I am guessing Australia? I had a stem cell transplant at age 58 and even though it was difficult to get through, I think it helped to hold down the myeloma.
Hope that helps and best wishes to you both!
Sorry to hear that your mother is suffering with multiple myeloma, but it sounds like she has done the best she can to manage it, even though now she needs more treatments.
Between thalidomide and Kyprolis (the other two drugs are the same), I think that you should thoroughly read up on any potential side effects that might be incurred. You can use the Beacon's search for the forum and for the rest of the site to do that. My impression of thalidomide, although I have not tried it, is that it can cause peripheral neuropathy of a more severe nature than some of the newer drugs do. Would she be able to take Revlimid instead of thalidomide? Those two drugs are in the same category of immunomodulatory agents.
How old is your mother and what is the 'cut off' age for stem cell transplants where you live? I am guessing Australia? I had a stem cell transplant at age 58 and even though it was difficult to get through, I think it helped to hold down the myeloma.
Hope that helps and best wishes to you both!
-
Nancy Shamanna - Name: Nancy Shamanna
- Who do you know with myeloma?: Self and others too
- When were you/they diagnosed?: July 2009
Re: Kyprolis, cyclophosphamide and dex trial?
JPC, Nancy - Thanks so much to both of you for your responses.
JPC - Yes, we are in London. Thanks for the tips regarding strong heart and lungs for Kyprolis. Mum is just recovering from pneumonia at the moment, so we were going to give it at least 2-3 weeks before Mum starts any treatment to try and ensure she has recovered as much as she can. Apart from the pneumonia, she has no prior history of heart or lung problems, but I will do my research on other possible side effects, etc. Best wishes to you both.
Nancy - Mum has only been offered cyclophosphamide, thalidomide, and dexamethasone (CTD) if she then proceeds straight to a stem cell transplant. Is this normal? Apparently, they do not usually offer CTD as an option if the patient is not proceeding to a stem cell transplant. Nothing has been mentioned about Revlimid, although I will ask.
I don't think there is a cut off age here for stem cell transplants (Mum is only 60). II met a woman the other day who was over 70 and she was having one! Mum really doesn't want to have one unless she has to (although she did have her stem cells harvested during her very good partial response to Velcade and dex last year ... just in case). Best of luck to you.
Thanks so much to you both again. Sending lots of positive vibes and thoughts - living one day at a time here in London.
Lex X
JPC - Yes, we are in London. Thanks for the tips regarding strong heart and lungs for Kyprolis. Mum is just recovering from pneumonia at the moment, so we were going to give it at least 2-3 weeks before Mum starts any treatment to try and ensure she has recovered as much as she can. Apart from the pneumonia, she has no prior history of heart or lung problems, but I will do my research on other possible side effects, etc. Best wishes to you both.
Nancy - Mum has only been offered cyclophosphamide, thalidomide, and dexamethasone (CTD) if she then proceeds straight to a stem cell transplant. Is this normal? Apparently, they do not usually offer CTD as an option if the patient is not proceeding to a stem cell transplant. Nothing has been mentioned about Revlimid, although I will ask.
I don't think there is a cut off age here for stem cell transplants (Mum is only 60). II met a woman the other day who was over 70 and she was having one! Mum really doesn't want to have one unless she has to (although she did have her stem cells harvested during her very good partial response to Velcade and dex last year ... just in case). Best of luck to you.
Thanks so much to you both again. Sending lots of positive vibes and thoughts - living one day at a time here in London.
Lex X
Re: Kyprolis, cyclophosphamide and dex trial?
Hi Lex
I have gone through treatment with Kyprolis, cyclophosphamide and dex, and am now on maintenance with Kyprolis and dex. I've had very good results -- having achieved a complete response as measured by the free light chain assay (I have kappa light chain myeloma).
You do need to monitor your lung and heart functions on this treatment plan, but even if you have a history of heart and/or lung issues, those are not necessarily contraindications if you do the monitoring.
In my case, I have moderately severe atherosclerosis (I had a quadruple bypass operation in 2003, and a stent inserted in 2014). My cardiologist measures my heart function with an echocardiogram twice a year, and a stress test once a year. My oncologist listens to my chest every two weeks, and monitors my oxygen intake with an oximeter once a week.
So far, so good -- no adverse effects on either cardiological or pulmonary function from the Kyprolis.
So Kyprolis can still be an effective option, even if one has compromised heart or lung function. It has worked very well for me.
Best of luck to you and your Mum!
I have gone through treatment with Kyprolis, cyclophosphamide and dex, and am now on maintenance with Kyprolis and dex. I've had very good results -- having achieved a complete response as measured by the free light chain assay (I have kappa light chain myeloma).
You do need to monitor your lung and heart functions on this treatment plan, but even if you have a history of heart and/or lung issues, those are not necessarily contraindications if you do the monitoring.
In my case, I have moderately severe atherosclerosis (I had a quadruple bypass operation in 2003, and a stent inserted in 2014). My cardiologist measures my heart function with an echocardiogram twice a year, and a stress test once a year. My oncologist listens to my chest every two weeks, and monitors my oxygen intake with an oximeter once a week.
So far, so good -- no adverse effects on either cardiological or pulmonary function from the Kyprolis.
So Kyprolis can still be an effective option, even if one has compromised heart or lung function. It has worked very well for me.
Best of luck to you and your Mum!
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MrPotatohead - Name: MrPotatohead
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: March, 2015
- Age at diagnosis: 65
6 posts
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