[dahlia55Participant]

Hello all , I have primary refractory myeloma and am due to start Carfilzomib. My treatment responses have not been good so far . It would be helpful to communicate with anyone else who has been diagnosed as primary refractory. We are a very small group I think with different experiences from those with good response. I am interested at the moment in Carfilzomib and how anyone has found this drug in terms of side effects and interference with life . I am due to start it in a week or so. Thanks.

[raelParticipant]

My husband has been on Carfilzomib for over two years. He started his Myeloma journey ovet 6 years ago. After limited success on Thalidomide and Lenalidamide and a stem cell transplant that gave him 18 months remission, he started Carfilzomib. His paraproteins dropped immediately and his consultant was delighted. However,he initially had some side effects…Sickness, nausea, breathlessness, fatigue and raised temperatures. He was in and out of hospital with infections. Although it was quite a difficult time, his consultant asked him to persevere as his Myeloma was now well down. He did and after about 4/5 months he started a much lower maintenance dose. He is doing so well.Side effects are minimal..he feels slightly off the day after his chemo. Life is good and his Myeloma paraproteins readings are continually below 3. Not sure if this is helpful but it’s good to share positive outcomes. I hope things work out well you. Take care

[dahlia55Participant]

Thankyou, Rael – this is helpful. Am due to start Carfilzomib this week so I will see how it goes…..

[seemeParticipant]

I didn’t respond to initial treatment on radar trial, I then had 2 rounds of dtpace with a partial response. 1st attempt at stem cell harvestzafter this failed. I then had 4 rounds of krd (carfilzomide, len and dex). I struggled with the dex dose but persevered to get to a successful stem cell harvest attempt and sct as this was the most successful treatment in lowering paraprotein
I’ll be honest I struggled with extreme fatigue throughout, fairly certain the dex causing crashes each week when I came off it as I had this in the 4th week of yhe cycle as well. Hopefully you’ll tolerate the dex better!

[dahlia55Participant]

Thanks seeme – I have completed one cycle of KRD now . Have found the side effects more significant than with DARA VTD / DT PACE . Am due to start the second cycle this week . I agree that the fatigue and the energy swings associated with the Dex seem more marked than with other treatments ( in my opinion ). However I understand this is a very active treatment according to my consultant so lets hope it helps …..

[squirrelParticipant]

Hi
I have had 2 stem cells transplants. First in October and the last one end of January.
Remission wasn’t long for me and according to my consultant they always hope for about 18 months but she was very disappointed that wasn’t achieved.
I am about to start on Carfilxomib this week.
Along side this I was to have lenalidomide but this was changed this week to cyclophosphamide instead due to recommendations.
Would love to know if anyone else about to start treatment has also been told this.
Hate the idea of going back to chemo again and the side effects along side it.
I have felt so well for the last 3 months and really thought I was in a good place.
Just goes to show how silent this disease is.

[seemeParticipant]

Sorry to hear you are back on treatment, I can totally empathise with how you are feeling.
I would be very interested to know why they have suggested cyclophosphamide not lenalidomide in addition to the carfilzomide. If you are able to share I’d be grateful
I had 4 cycles of krd (dex, carfilzomide and len) sept 23-jan 24. I had horrendous fatigue (barely functioning to do the basics), struggled through to get yo sct in March. Thought it was the high dose of dex the issue,
Have now restarted krd, after 1 cycle same energy crash. Doses have been reduced for cycle 2, and have delayed the len tablets to try and isolate which drug is the issue. Am better energy this week not yet having had any len
Pharmacist friend is investigating incidences of side effects of len for me, as she suspects this might be the problem drug
Hoping drug reduction will help but want to gather any information
Appreciate I’m not helping answer your question but if I find anything put on my investigating I will happily share

[squirrelParticipant]

With regard to the change to cyclophosphamide instead of lenalidomide the Consultant said was due to recent recommendations.
I tolerated lenalidomide very well.
In fact I would say I sailed through.
My light bands have increased and I think they want to hit it hard.

[seemeParticipant]

Thank you for this information, much appreciated. I shall ask at my next clinic appointment if lowered dose doesn’t work.

I hope this combination goes well for you.

[dahlia55Participant]

Hi all – thanks for responses re KRD. I have now had 2 cycles , the first was difficult with a lot of aches and pains ( although this was probably due to Filgrastim I had to give myself due to low white cells ). I think I am more fatigued and have had cramps in legs thought to be due to Lenalidomide and treated with Magnesium salts( successful ) . However, my paraproteins have gone down to their lowest ever so that is great. I think the plan is to possibly spread the cycles out to two monthly if I continue to respond to this. Thanks for all the info from others – very helpful.

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