[peter49Participant]

Hi everyone

I was diagnosed in May this year after consistent and severe back pain and sciatica. I was given VCD chemotherapy, which was proving effective, for 3 cycles, but with extensive side effects this was curtailed in August. However Myeloma levels had reduced and I was considered for possible SCT as, despite my age, I had always gone to the gym 3 times a week and, I think, with decent fitness level. I was pleased to hear this and looked forward to what I saw as a “game-changer” in my future.

Then after the tests for lung function, heart performance, blood levels etc it seems the Myeloma had returned and I will now be starting on ongoing chemotherapy in January using KRD instead of VCD. This will be my ongoing treatment as I understand it and I am hoping it will be effective in controlling Myeloma, and also having less powerful side effects than VCD. I hope that this will allow a return for some kind of normal life.

I have been posting monthly Updates on my YouTube channel/Facebook, as the early advice seemed to be to use social media, if you were on it, to let your friends know the situation. This has been very useful in saving us telling the story again and again and risking avoidable confusions and contradictions. I will post on here if that is appropriate (warning – Update include music)

I would welcome any views on the KRD treatment and also any information on any new or possible new treatments that may be arising in the future.

Sorry for rambling – but I have been rambling a lot in the last few months

Thank you Peter

[tony642Moderator]

Hi Peter,

I am one of the forum volunteers. I have not had the treatment you have had, so I cannot comment about it, but have you tried using the ‘Ask the Nurse’service on the MM website? These are very experienced specialist nurses who can probably give you more information about it. You could also try using the peer buddy service and ask to speak on the phone or zoom to someone who has had the treatments you have had to get their experiences of it.

I hope it works well for you, and I know this must be a difficult time for you, but keep your chin up and stay positive. Let us know how you get on.

Sincere regards, Tony

[mulberryParticipant]

Happy New Year Peter,
I’m sorry that you are having to start another line of treatment, but 3 cycles of treatment doesn’t seem many to me as a patient, to knock the myeloma back to the point where you are likely to have a long period of stability.
I haven’t had carfilzomib (“k”) yet, but it is newish (it was only in trials when I was diagnosed 4 1/2 years ago) and has a reputation as an effective myeloma drug. Lenalidomide (Revlimid, the “R”) is the backbone of all myeloma treatment. It’s 8% more effective than Thalidomide and is a kinder drug, less likely to cause side effects that would stop treatment. The “D” is the dreaded Dex, which you’ve had before.
As you will have heard, myeloma affects different patients differently, and we don’t all respond well to the same drugs. Hopefully you will respond as well to KRD as you did to VCD, without the side effects, so you are able to tolerate it for as long as you and your Dr feel is necessary.
Best wishes, Jane.

[peter49Participant]

Hi Tony

many thanks for you reply. I will try the “ask the nurse” service as you suggest, and also look at the “peer buddy” arrangements to see if I can get some information. It appears that KRD is quite new so there is less information about it generally.

Many thanks again

Peter

[peter49Participant]

Hi Jane

Many thanks for this information. Your replay is very useful in seeing what the likely impacts and results of KRD.

Especially useful to know what the ‘K’ and the ‘R’ seem to be kinder and more effective that other options. The impacts the ‘D’ I am assuming will be similar to what I’ve already had in VCD. In fact the steroid seemed largely benevolent, and I was especially grateful for it in the immediate aftermath of diagnosis where it was so effective in dealing with the very significant pain in my back, legs, knees etc etc.

Once again many thanks for your help and I’ll let you know how I get on

Peter

[kh0305Moderator]

Hi Peter,
My dad has MM and was diagnosed back in 2013 and is currently on his third line treatment. He’s not had the same combinations that you have had, but he was in a similar situation to you with DVd where he reacted badly to it from a side effects perspective so it was curtailed and he was then put on IRd which he has had fewer side effects from and is able to live a more normal life than when he was on Dvd and it is proving to be more effective against the MM. I hope that it is the same case for you xx

[peter49Participant]

Hi, many thanks for this , and its good to know you’re dad is still living a more normal life now with new drugs. It looks like new drugs are emerging all the time from the hard work done by research staff, and guided by the reactions of patients as they are tried. I am waiting to start the KRD and hope to let people know on Myeloma UK how I am managing on it. Hoping for the best

Many thanks again

Peter

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