[seemeParticipant]

Dahlia

Thank you for your kind note.
Like you KRD is doing its job, finally after 18 months, 3 lots of chemo, sct and now 2 rounds of krd my are low!
However they want to keep me on krd but have finally understood how much I’m struggling to tolerate it.
I started on 2 carfilzomib infusions per week and 25mg len.
This got reduced to 1 infusion and 15 mg len, which I still struggled with so they are taking the len down to 10
Effectively 2nd cycle was only carfilzomib as I stopped the len after 3 days. I seemed OK with that
If I can’t tolerate the combo at len 10mg, they’ll stop the len and try going back up to 2 carfilzomib per week
Appreciate a lot of details but posting in case useful for anyone else

Just restarted the len this week so fingers crossed!

[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.

[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

[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!

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