[daisychainParticipant]

Hi

I’ve had MM the past 8 years, had 2 sct, velcade, Revlamid, pomalidomid, thalidomide, cyclophosphamide.

Just had 3 cycles of DTPace which has brought my sflc down to about 400 was 4,500 and was affecting my kidneys.

I’m due to start carlfizomide and wondered if anyone else is on this treatment, Your protocol and how you got on.

Best wishes

Dawn

• This topic was modified 9 years, 6 months ago by  daisychain.

[julierennieParticipant]

Hi

Yes i have just completed four months treatment on the myeloma 11 trial and carflizomib was part of this treatment. This has worked extremely well for me. I am due to have sct in January. I can’t say that this treatment has been easy for me but that may not have been due to the carflimozib. Can i ask you how you have found treatments, its encouraging yo me that you have had this condition for 8 years. I hope this treatment works well for you. Good luck.

[daisychainParticipant]

Thank you Julie

I’ve been on a lot of different types of treatments. So it’s difficult to say how I got on with each one. The positive thing is that since diagnosis I have been able to live a good quality life. Over the years I have had to make many adaptions to my life. The biggest roller coaster for me is the emotional insecurity living with mm.

It great that you are in a position to start SCT in January and I wish you all the very best.. Where are you being treated?

Dawn x

[julierennieParticipant]

Hi Dawn

I’m being treated at the Freeman Hospital in Newcastle, my consultant is Professor Graeme Jackson. I couldn’t ask for better care by
Both Professor Jackson and the nursing staff. You said in your post that you have maintained a good quality of life, that’s so good to hear. My concern is that whilst i’ve been on this treatment my quality of life has not been so good which is why i was interested in finding out how other treatments faired although i realise that everyone is different. Thank you for your reply.

Good luck with the Carflizomib

Julie

[daisychainParticipant]

Hi Julie

Please don’t misunderstand me my expectations of good quality of life have adapted over the years.. Such as adaptions to manage a weakened immune system and managing different treatment protocols..

Good luck

Dawn

[AlanChantParticipant]

Hi Dawn,
I’ve been on the MUK 5 trial for 18 months, which compares Carfilzomib against Velcade. So far its been very good, with paraproteins undectable for the last 12 months…so, so far so good!
Best of luck with the treatment.

Alan

[VickiParticipant]

Hi all

I see that you’ve all tried a variety of treatments. Did fatigue figure a large part of your daily lives. Colin is on treatment at the moment and had only the first cycle but what we don’t know is whether it’s the mm that is causing the tiredness or the treatment….. Colin was bemoaning the fact that he get so tired after doing anything, this fatigue seems much worse than any other time he has been on treatment.

I’d be interested to hear your experience.

Thanks

Vicki x

[daisychainParticipant]

Hi alan

a little belated to say thank you for your posting.  It’s great news that the Carfilzomib is working so well for you. Have you been taking any other drugs with it? What is your protocol? Did you get any side affects?

ive been on it since end of last year combo Iv methlyprd, thalidomide, it’s holding my disease but flc are still high 2,800. Recently my kidneys were affected due to dehydration had to have Iv fluids for a week. . Been advised to keep focused on my fluid intake.

good health

dawn

• This reply was modified 9 years, 2 months ago by  daisychain.

[daisychainParticipant]

Hi vicki

Recent years fatigue has played a major part in my daily life.  It has taken time to accept and adapt to the changes.  Mind you I think getting older has a part to play too lol

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