[suenevParticipant]

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 line because of the increased risk of infection and/or blood clots.

Does anyone have any experience of this drug that they can share?

 

[tonyfParticipant]

Hiya suenev.
I am terrified of needles!!!!!
I was diagnosed 4 years ago with mm, I was randomised and put onto the Myeloma X1 trial. It is an all tablet drug trial, I had a monthly blood test to monitor the pp’s etc. Occasionally when attending clinic an additional blood sample was requested for the trials people to monitor progress. I don’t think that there were any more or any less needles on the trial than if I had been on any other treatments.
I took the myeloma X1 drugs for 6 months, far too long a time to have a line fitted, there would be real concern over infections, also it wouldn’t be that convenient to you for that length of time.
After the drugs I had a stem cell transplant, opted for no maintenance drugs after SCT, remained on the trial, had 26 months drug free remission.
Because you are on a drugs trial I don’t think that as a patient you are treated any differently, but at the Leicester Royal where I attend there is a special unit funded by one of the cancer charities that is specifically for patients on drugs trials, its a bit more comfortable than the ‘normal’ clinic and less crowded, but staffed by the same nurses etc and you would see the same consultants as the usual clinic.
I did have a couple of infections during the trial period, which hospitalised me, but that could have happened regardless.
Hope this helps you.
regards
Tony F

[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!!

[robbParticipant]

Sue, my mum was diagnosed last March , massive shock to us all. She was offered the XI clinical trial and took the opportunity, it worked well for her with very few side effects and we are all pleased. The borders general and the western hospitals were great, we could not expect any better and very proud of all the staff. What ever route you choose I hope all goes well, for mum it was the XI and we are all pleased she took the opportunity, don’t read too much on the Internet, I was told not to as the info is out of date and they were right, it is. Myeloma UK have  been perfect and the best place to read up, I’ve never written on here before just felt I wanted to, good luck Rob.

[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

[tonyfParticipant]

Hi Sue, that it.
You know if i was in your position I would still go for the myeloma X1 trial regardless of which combination you get.
My pp reading at the start of my myeloma X1 trial was 44 by the end of the trial it was at 7, so that gave the SCT team a real good base at which to start.
If you can grin and bear the needles it will be worth it.
Someone suggested that I had hypnosis to help overcome my needle fears!
best of luck
Tony F

[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

[PhilipandfionaParticipant]

Have you thought about hypnotherapy to get over your fear of needles?

[tonyfParticipant]

Oh yes, I stopped smoking 35 years ago with the aid of hypnosis, I should go for it again.
In the meantime another pre velcade blood test beckons me for tomorrow, ugh!
Tony F

[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

 

 

[robbParticipant]

Sue, sorry I haven’t had chance to get back to you, mum followed the same route as you, it was the best for her and has worked so far, touch wood. She hasn’t has many side effects just tired, been home for a while now and getting back to normal,she says not to worry too much as the care is there for you. There are some amazing people out there and on this site, they really care! Please be strong and let us know how you are getting on, Rob

 

[suenevParticipant]

Thanks for this Rob!  So glad your Mum is doing well!!

 

Day 5 of treatment today and apart from only getting about 4 hours sleep a night am doing well.  Hope this bit will improve this week when I am off the Dex!

Only other downside is having to inject every day to ward off the threat of thrombosis from the Revlamid!

But I am determined to stay positive and beat this!!

 

Best wishes to your family

 

Sue

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