[seemeParticipant]

I had 4 cycles of krd over the winter pre sct. I struggled for the last 3 cycles, energy crashed so that I struggled everyday of the week to do anything. I kept going to get to sct but have now been put back on krd
They lowered the dex dose but by the end of the 1st cycle I wasn’t able to function. They lowered the other doses to 1 infusion of carfilzomide and 15mg of len. After 3 days I was again struggling
Many days I struggle to get out of bed, or sit upright, my temp has periods of being low, I can’t walk 5 mins down the road,I struggle to have a conversation, no appetite
Struggling to get consultant to understand I’m not functioning rather than fatigue
Has any one had similar issues on these drugs? Don’t know if it is or the combination but delayed len on reduced doses and I had a few better days until I started taking it again

[dahlia55Participant]

Hi Seeme , sorry to hear you have been having such a difficult time on KRD. I had a lot of side effects in first cycle – felt very fatigued . This has gradually improved and I am now tolerating the dugs fairly well. I do have a Dex uplift after taking it which lasts for a couple of days and then have a slump but this is manageable ( Dex 20 mg once a week ) . I don’t think I have any real side effects from Lenalidomide ( apart from cramps in feet and legs, much better since I take Magnesium salts ). My consultant has implied that the higher doses of Carfilzomib can be very difficult to tolerate ( I was interested in a drug trial with higher doses of Carfilzomib and he said the dose would be difficult to manage ) so I wonder if that is the main culprit ? You were having it twice weekly so I wonder if you were on a very high dose. I am now quite wedded to KRD as it is bringing my paraproteins down to lowest ever level. Even the SCT did not really impact on my paraproteins and I had to go straight back into active treatment. I very much hope you are feeling better than when you posted and I really sympathise with the dilemma of horrible side effects to something you really need for your illness.

[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!

[tony642Moderator]

Hi Dahlia,

I came out of remission last year, I was put on Dexamethazone, Carfilzimib and Lenolidamide for about 9 months, and I suffered with inflamed bronchial tubes as a result. After the cancer markers were found to be considerably reduced, I am now just on a maintenance dose of Lenolidamide. I am suffering very few side effects and am in a good place both physically and mentally at the moment, keep your chin up, you don’t know what might be around the corner!

[johnsuffolkParticipant]

I was given carfilzomid, dex and lenlidomide starting April 2003. First 2 cycles had very unpleasant symtoms but advised persevere and since then virtually no symtoms and myeloma markers all returned to normal in cycle 3.
I would persist for at least 2 of 3 cycles.

[raelParticipant]

My husband started Carfilzomib and dexamethazone as a 4th line treatment. He had a really rough time. In an out of hospital with high temperatures, breathlessness, extreme fatigue …and the rest! After 2 /3 cycles his paraprotein levels were way down. His consultant asked him to persevere and things got better. Now after 3 years his levels are still below 3 and he is doing great. We live life to the full!

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