[willjames2Participant]

Hi Folks,

So had a recent marginal increase in my light chains. Been to see Doctor today and although he’s not too worried at the moment at the numbers which are approx 102. He did discuss if they increase again that he may want me to go on Kyprolis or Carfilzomib. Apparently I qualify because it’s a biochemical relapse which is essentially a clinical relapse and I’ve not had Velcade as first line of treatment. I had CTD.

Just wondered if anyone has had any experience of Kyprolis? Is anyone on it now?

Thanks in advance.

Kind Regards

Scott

• This topic was modified 6 years, 1 month ago by  willjames2.

[kevinParticipant]

Hello Scott

I am being treated with carfilzomib and am in the middle of my 3rd cycle. I believe it is a targeted medication instead of a general one. This is my second relapse with my first 2 treatments being CDT followed by a SCT. I was first diagnosed in 2006. They give it to me along with dexamethasone. I also have a monthly infusion of Zometa. I started the treatment in January and believe my Para proteins were around 22. The latest count I was told was 5. It seems to be working and I am convinced they will soon be undetectable. Have been lucky again and had few and not too severe side effects. The main one being tiredness and lethargy but manageable if I pace myself, which I don’t always do.
Best wishes
Kevin

[willjames2Participant]

Thanks Kevin,

Do you mind me asking how old you are? Do you still work?

I’m hoping that I can continue to work even with the treatment but I do have a pretty sedentary job.

Where are you treated?

Thanks in advance.

Kind Regards

Scott

[kevinParticipant]

Hello Scott

I was 48 when diagnosed and just turned 60 last week. Work – long story – Before diagnosis had planned to retire early but loved job. Then diagnosis was unsure of prognosis, also it had damaged my spine. worked in hospital and lifting involved in job so weighed everything up and decided to retire. Company and management were absolutely fabulous and helped in any way they could. Still hear after 12 years and very much regret giving up work. However I now look after my 18 month granddaughter 3 days a week. It is a 4 week cycle with the carfilzomib and dexamethasone given for two consecutive days for the first three weeks then in week four no carfilzomib and a dose of dexamethasone tablets. Each session takes about 2 hours now as they have administer the drugs over a set time period as also pump you with saline. I’m lucky enough to have nurses treat me at home. I am down in Kent and see my Consultant at the Alexandra.
Am happy to answer any questions however I have never been interested in the ins and outs of the disease, I leave that to my consultant. The only thing I know about are the par protein count. All I ask is how things are going and so far he has so going good para proteins going down. that’s all I really need to know.
Happy to answer any questions if I can.
Best wishes
Kevin

[willjames2Participant]

Hi Kevin,

Thanks again for the prompt response. Good to hear your story and the treatment regimen and treated at home…lucky you.

I’ll keep you posted on how I get on, when it starts…but hopefully it won’t quite be yet. I’m still hoping that I stabilise for a while.

Have a good Easter.

Onwards and Upwards

Scott

[alexmercerParticipant]

Hi

I am currently on a clinical trial called Cardimon. The trial uses Carfilzomib with cyclophosphamide and Dexamethasone to start with. I have been on it a year now. After induction you get randomised to either have a sct or further chemo. Induction is CCD twice a week for 4 cycles each cycle being 4 weeks with the 4th week being a rest week. I was randomised for further chemo but had a stem cell harvest if needed in the future. The second phase is consolidation, which is the same as induction. By this time I was lucky enough to have had a full response (remission). Current situation is that I am now on the Maintenance phase of the trial which is Carfilzomib with Dexamethasone but now only once a week, this lasts for 18 months. I have just finished cycle 2 and a still in full remission.

[patsyannParticipant]

Hi. My husband started on Carfilzomib and Dexamethasone in December. His kidneys were affected following the first dose as the creatinine levels shot up but they recovered after lots of fluid. Same happened after second dose. His blood pressure also dropped significantly at one point. He was admitted for a few days each time until they worked out lower dosage and how much fluid to give him. Now about to start Cycle 5 with 2 days a week at Day Unit for 3 weeks out of 4. Chemo doesn’t take long but fluid drip takes 3 hours in his case. We’re waiting for latest pp results but initial response was good. This is 5th line treatment for him so we’re grateful he got it. Side-effects other than the above mainly tiredness. If you do go on it watch for temperature spikes and confusion, which was how they picked up kidney problem, and phone the emergency number they give you right away if that happens. It’s not a time to worry about being over-cautious! Good luck.

[natdarke1Participant]

Hi

My mum has light chain multiple myeloma and had a SCT in 2015. She has recently been told her light chains have increased. They seem to be increasing by about 10-13 per month, now sitting at 60 which I know is low, however, the consultant convinced the myeloma is active again. Its all very worrying and uncertain. She has now had biopsy and scan which both came back negative- which I know is a good thing. I just cant help be angry that after having a SCT she’s only really had 2 and half years without it being active again. Its so comforting reading everyone’s stories on here plus learning different information that I previously didn’t know.

Natalie

[patsyannParticipant]

Hi Natalie

I don’t know anything about light chain Myeloma as it’s the other type my husband has. He only got 15 months treatment-free after his SCT in 2014. Neither Revlimid nor Pomalidomide worked for him so I know how difficult it can be when that happens as other people sometimes get years of remission on those too.  However he’s done better on Velcade and Carfilzomib (so far) and is still here and comparatively well at the moment, which I don’t think his consultant expected. It takes so much of your strength as a carer just to support someone through all the ups and downs of this. Somewhere along the way I decided that anger was a drain on my energy that I couldn’t afford and that wasn’t helping either of us. It’s easier to say that than to let go of it though. I hope your mum’s consultant finds the best treatment for her and wish you both well.

Pat

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