[suenevParticipant]

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

[suenevParticipant]

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 stage/treatment I would be on or what size to get!

Was diagnosed in October but various complications have meant that I am now about to start treatment.  Have timed the start so the wedding falls during my week off meds.

[suenevParticipant]

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 having damage to my spine caused by the myeloma so any help with posture is very welcome.

You can only have one treatment at a time, so I might save the hypnotherapy and massage up for later or access those elsewhere.

Don’t know if there is a similar organisation where you live Tony where you could access some hypnotherapy to help you.

Starting treatment the week after next so I can aim to be on a week off treatment (cycles days 22-28) for my son’s wedding in April.

Looks like I might miss my niece’s wedding at the end of August as this is likely to coincide with the Stem Cell Transplant or its recovery period.

Sue N

 

 

[suenevParticipant]

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

[suenevParticipant]

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 drug, Carfilzomib, is delivered intravenously – normally two days a week for three weeks of each four week cycle.  I’m trying to find out how well people have tolerated that.

Many thanks for your post and best wishes to your Mum

 

Sue

[suenevParticipant]

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 subsequent cycles. That’s an awful lot of needles and I’m not sure I can hack it!

Have to make my mind up by next Wednesday when I see the consultant again!!

[Author]

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