[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.

[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.

[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 …..

[dahlia55Participant]

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

[dahlia55Participant]

I recently decided at short notice that I wanted to consider travelling ( driving ) to a very special big family event in Europe.I was 10 weeks post transplant . I discovered amazingly that even at that stage I would be able to get travel insurance if I was deemed fit to travel by my consultant. My consultant was incredibly helpful and wrote me a letter for the insurance company taking everything into account – destination , proximity to hospital ,healthcare system in the country – and said I would be fit to travel. So I would discuss with your doctor. I think you would be likely to be travelling before revaccination as they need to be done between 3-6 months post SCT ?

[dahlia55Participant]

Hi Andy ,

I had DT PACE in November last year due to stopping responding to DARA VTD. It required an inpatient stay and a continuous four day and night infusion of the drugs. The worst thing I recall was the restriction of being attached to a drip for four days and nights. Usual side effects of chemo – hair loss ( 3 weeks later ), suppression of all blood cells so needing close monitoring after the chemo ( I chose to stay in hospital through this phase and was there for 2 weeks in total ) but generally side effects not major for me. I was given water tablets to make me pass water as they give lots of fluids with this chemo combination. Nausea is a side effect but I did not have this due to being given a lot of anti sickness medication.

I recently had a SCT and that was more arduous but still manageable.

Hope this helps.

[Author]

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