[alleishaParticipant]

hi, my dad was diagnosed with aggressive Myeloma one year ago and was told he only has 7 years to live. He has just started a new trial drug. As he has the aggressive type he was unable to have the stem cell transplant. Has anybody else started this trial or have the aggressive Myeloma?

Anything you found helped with your Myeloma apart from the chemo? Such as eating/drinking certain foods.

[tmcintyreParticipant]

Hi,

Can you tell us which drug it is?

best wishes

Teresa

 

 

[alleishaParticipant]

Thanks for your response. The trial is called Millenium 4 and I think the drug is called lxazomib

Alleisha

[tmcintyreParticipant]

Hi,

My husband was diagnosed in December and has tried two different combinations of drugs which have not reduced the cells in his bone marrow. He is just finishing his first cycle of ixazomid which he is taking with Revlimid and Dexamethasone. He will have 3 cycles and has been told he is still aiming for SCT but has been warned he will be on maintenance chemo afterwards. He has never asked what stage his Myeloma is or how long he has.

best wishes

Teresa

[alleishaParticipant]

They advised my dad to have the SCT but because of his aggressive type they now have said there isn’t much point as the Myeloma will come straight back. So he is now on the trial drug which is one tablet once a week for 2 years although we don’t know if it is the actual tablet or a placebo. And then he will go on to maintence.

If the other chemo isn’t working for your husband it may be worth asking what trial drugs are available and see if he is able to go on one.

All the best for you and your family

alleisha

[tmcintyreParticipant]

Thanks,

We’ll see how he gets on with his 3 cycles of ixazomib. His consultant didn’t say he was on a trial although as you say, that drug is on trial, he just said he’d secured funding for it.  We’ll know more as time goes on.

I hope your dad keeps well,

Teresa

 

• This reply was modified 7 years, 2 months ago by  tmcintyre.

[cleonicemullerParticipant]

<p style=”text-align: center;”>Any body know about people using cbd oil? For myeloma please. ..</p>

[tmcintyreParticipant]

I can’t see that anything about cbd oil on here but if you can get onto the UK Myeloma Support Group on Facebook they have discussed it briefly.

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