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Discussion about multiple myeloma treatments, stem cell transplants, clinical trials, alternative medicines, supplements, and their benefits and side effects.

Kyprolis, Pomalyst & dex after many prior therapies

by RThompson24 on Fri Sep 09, 2016 2:15 pm

Hi guys.

I'm new to this board. My mum has multiple myeloma. She's 63 and has had it for 9 years now (shes a fighter!) Over that time, she's been on almost all the myeloma drugs, including thalido­mide, Revlimid, dexamethasone, and Velcade, etc., etc.. Her levels have been kept at a man­ageable level for all this time. At diagnosis she had a big hit of cyclophosphamide and a stem cell transplant, etc. (9 years ago).Shes been on a majority of the traditional treatments every week ever since. She's had many, many "bone lesion" (hotspots) throughout this time.

Three weeks ago an ambulance was called as virtually overnight she became unwell. She was diagnosed with pneumonia, neutropenia, low haemoglobin levels, influenza A, and had severe dehydration). It took her body a while to get over the pneumonia and influenza, but she did.

She then had a bunch of tests and scans done and it showed her kidney function was pretty bad and some lesions on her liver were showing on her full body scans. :( Shes lost 12 kg (26 lbs) in 3 weeks. In the last 4 days, she's had 2 blood transfusions.

We had a meeting with her oncology specialist yesterday. He said apparently her body is no longer responding to treatments, and that apparently liver lesions in multiple myeloma are rare, that her cancer is now aggressive. :( She is no longer a candidate for radiation or a stem cell transplant. Apparently her last option now is a super strong hit of Kyprolis, Pomalyst, and dex (KPD).

I'm very scared for her. She's super positive, but the specialists couldn't really tell us how things might turn out as it's not a "textbook case" of multiple myeloma.

Pomalyst and Kyprolis have been approved for her case, and will arrive in Australia ready to start in 2 weeks time. They treated her with a cyclophosphamide today, a drug to attempt to help her liver function, etc. They need to keep monitoring her everyday as her levels rose so so quickly. :(

My question is: In people with relapsed multiple myeloma who have bad kidney function, many bone "hotspots", and have all of a sudden developed organ lesions and a bad protein reading, is the Kyprolis, Pomalyst, and dexamethasone treatment promised to work well still, and be effective still?

I've done a lot if reading in the last day or so as the specialist seems concerned. But I had trouble finding information on the effectiveness of the Kyprolis, Pomalyst, and dexamethasone combination in people like my mum's situation. Is there still hope?

I'm feeling worried as its a lot to understand and process. I'm only 24. But we are being positive for mum. I appreciate any advice, info, comments, etc. Thanks for your help. Sending positive healing vibes to anyone that this disease is affecting right now.

RThompson24

Re: Kyprolis, Pomalyst & dex after many prior therapies

by NStewart on Sat Sep 10, 2016 7:23 pm

I'm sorry that I can't bring any light to your question. It sounds like your mother is really very unusual and that her specialist is doing what he thinks may help. Are any of the new immuno­therapy drugs approved in Australia? One of the new ones, Darzalex (daratumumab) seems to have a profound effect on people who have used all of the other drugs. I have no idea what effect it has on the kidneys and if it would treat the lesions on her liver.

All the best to your mother and to the rest of your family during this crisis period,
Nancy in Phila

NStewart
Name: Nancy Stewart
Who do you know with myeloma?: self
When were you/they diagnosed?: 3/08
Age at diagnosis: 60

Re: Kyprolis, Pomalyst & dex after many prior therapies

by skippy on Mon Sep 12, 2016 2:18 am

Hi RThompson24,

I too am in Australia and on the Kyprolis, Pomalyst, and dexamethasone combination. After 2 cycles, my free light chains decreased a little, but my paraprotein increased. I have just started my 3rd cycle. I'm not sure which is more important, as I do have renal failure.

I too have moved through most drug combinations, but in only 3 years. Your mum is right. She should be hopeful, positive, and optimistic. There is no reason to think this combination won't work for her. Everyone reacts differently. Remember that. In saying that, I am not having a good run with these drugs – I'm not sure if it is side effects or the myeloma itself. (Just being honest!)

Please keep us informed as I would love to know how she fares.

In fact, if anyone has been on this combo please share your experiences and tips.

And just as an aside, in Australia, Kyprolis (carfilzomib) has been submitted for consideration at the next PBAC meeting in November 2016. Currently it is available in the setting of a clinical trial or in special circumstances, through an expanded access program. In the USA and UK, Kyprolis is approved and reimbursed through the local authorities and haematologists can prescribe carfilzomib to patients.

skippy
Who do you know with myeloma?: self
When were you/they diagnosed?: Jan 2013
Age at diagnosis: 50

Re: Kyprolis, Pomalyst & dex after many prior therapies

by Tigerboy74 on Mon Sep 12, 2016 1:45 pm

I was on this treatment regimen just before my stem cell transplant and it got me in good shape except for an M-spike of 0.3 g/dL (3 g/l).

I came out of the stem cell transplant with everything normal, but I still had an M-spike. They put me back on the Kyprolis, Pomalyst, and dexamethasone regimen and I now have a 0 M-spike with my other levels all at normal.

I am on day 8 of another cycle today. The side effects are much more minimal then the Revlimid and Velcade, but that's just my experience.

Tigerboy74
Name: Mike
Who do you know with myeloma?: Me and few others
When were you/they diagnosed?: 2007
Age at diagnosis: 32


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