Activity – suenev – Myeloma Forum

suenev replied to the topic Coping with dexamethasone in the forum Newcomers 8 years, 3 months ago

Thanks everyone for the advice and shared experiences. Sorry for the delay in replying but I have been away to see family before I start popping the pills!

Keeping a diary seems like a good idea and also going with the flow. Guess once I get into the routine of it all it will make sense!

3 days to D(drugs)-Day!

Bring it on!!

Sue

suenev replied to the topic Coping with dexamethasone in the forum Newcomers 8 years, 3 months ago

Thanks ladies! Guess I will just have to suck it and see!!

Some of the advice I have read says to take it early in the morning – which makes sense.

At least I might catch up on the chores on the wide awake days and with my son’s wedding coming up in April I have a good excuse to go shopping! No outfit yet as I didn’t know what s…[Read more]

suenev started the topic Coping with dexamethasone in the forum Newcomers 8 years, 3 months ago

Have recently been randomised to CRD as part of the Myeloma XI trial and due to pick up meds next Tuesday.

The hospital have told me that the hardest part will be coping with the rollercoaster side effects of dexamethasone. Does anyone have any useful tips that might help with this?

suenev replied to the topic Carfilzomib administration in the forum Treatment 8 years, 3 months ago

Brilliant news yesterday! Decided to go for the Myeloma XI trial and was randomised to CRD!!

So all the worry about needles was unnecessary and I get the new immunotherapy I wanted. Someone up there must love me!

Also paid a visit to CancerCare and signed up for some one-to-one on Alexander Technique. I have had a hip replacement as well as…[Read more]

suenev replied to the topic Carfilzomib administration in the forum Treatment 8 years, 3 months ago

Thanks Tony

I was coming to the conclusion that I would do the trial as I want to give myself the best chance of a good response and remission. Would really like to find someone who could reassure me from their own experience that the needles are doable!

I’ll let you know how I get on.

Best wishes

Sue

suenev replied to the topic Carfilzomib administration in the forum Treatment 8 years, 3 months ago

Hi Rob

Which drug combination did your Mum have? If it was a tablet only trial, as it was originally, it would have been a no-brainer! I would really like CRD but if I’m randomised to CTD I am no worse off than I would be on standard treatment. However, on the new version of the trial you have a 50% chance of getting CCRD and the fourth dr…[Read more]

suenev replied to the topic Carfilzomib administration in the forum Treatment 8 years, 3 months ago

Thanks Tony! There has been a new ‘arm’ added to the Myeloma XI trial which now means you have a 2 in 4 chances of getting a new programme of treatment -CCRD- whereas the original trial only offered CTD or CRD. The second C in CCRD is carfilzomib which is delivered intravenously on days 1 and 2 of the first cycle and days 1,2,8,9,15 and 16 on s…[Read more]

suenev started the topic Carfilzomib administration in the forum Treatment 8 years, 3 months ago

I am newly diagnosed with multiple myeloma and am considering signing up for the Myeloma XI clinical trial. I am particularly concerned about how I would cope with the administration of this drug if I am selected to have it. It seems an awful lot of needles and yet I have been told that my consultant is reluctant to fit a central or Hickman li…[Read more]

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