[pottersgirlParticipant]

I’m on my 5th cycle of Carfilzomib and Dex. Each cycle comprises 3 weeks on and one week off. I have treatment every Thursday and Friday. My haematologist says I will have one more cycle (making 6 in total) and then a review. My paraproteins are coming down and my light chains are taking their time. Having had 2 SCT’s which failed after a few months and nearly 2 years of Daratumumab, which finally stopped working, I’m experiencing extreme fatigue and my medical team say this is due toan accumulation of Carfilzomib. The treatment is extremely harsh and I’d like to know what other people have experienced on this drug and what comes next.I was diagnosed in 2016

[flemingkModerator]

I am sorry that you have not yet received any responses to your post. My name is Katie and I am one of the Myeloma Information Specialists here at Myeloma UK, I hope you don’t mind me replying on this occasion.

Unfortunately, fatigue can be a common complication of myeloma and its treatment. There can be a variety of causes, but it commonly occurs as a result of anaemia, which would be picked up in your routine blood tests. Treatment is always a balance between the need to bring the myeloma under control on the one hand, and not cause too many side effects on the other – this is mostly a balance that can be achieved. I would encourage you to speak to your medical team (haematologist and clinical nurse specialist) again. They should be able to provide further insight into the causes of the fatigue you are experiencing based on the results of your blood tests and suggest ways to manage it.

You might find the following resources useful:

• Our Fatigue Infoguide
• Our video about coping with myeloma induced fatigue
• Our Ask The Nurse blog about fatigue

Our Patient Diary has a section to record symptoms and side effects. This may be useful to help you keep track of your symptoms and to help accurately describe them to your medical team.

I hope this has been helpful but if you have any further questions, or would like to talk things through, please feel free to call the Myeloma Infoline on 0800 980 3332, or alternatively you can email directly to askthenurse@myeloma.org.uk

Katie

[kh0305Moderator]

Hi pottersgirl,
Im afraid I don’t have any experience of Carfilzomib but I can definitely say that dad has experienced fatigue throughout his myeloma journey (since 2013 on various different treatments). As Katie has mentioned in her reply, it does unfortunately seem to be a problem with myeloma. Dad has only seemed to really not have fatigue when he’s been in remission periods and on maintenance, but all of his treatments have given him issues with fatigue to varying degrees. He is currently in between treatments, starting 4th line treatment next week, and has got some energy and thinking more clearly which is nice so we will see what effects the new treatment bring…. One thing dad’s consultant has always said to us is not to be afraid to report any side effects so they can try and remedy them where possible, so please do keep highlighting it to your medical team to see what they can do to try and improve it. Hope the fatigue improves for you x

[raelParticipant]

Hi Pottersgirl. My husband was diagnosed in 2018 aged 64 and after various treatments and a SCT he started Carfilzomib. At first the side effects were pretty bad , Fatigue, breathlessness, high temperatures and for the first 3 months he had several visits to hospital. His consultant was keen to keep him on the treatment as his paraproteins came down very quickly and this was the first treatment that seemed to work. After 6 months he went onto the maintenance programme. Now after 20 months his Myeloma is described as inactive. He still gets a bit tired and now and again feels a bit “off” just after his chemo. Overall he is great! We are just back from a cruise and off to Wimbledon next week. He plays live music in a number of clubs. Like you he is 3 weeks on and one week rest. His consultant agreed a few extra rest weeks so we could go on holiday. Its working really well for himm. Long may it continue! I hope it all works out for you too.

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