Eric's story and millennium trial

[Sharona58]

Hi,

 I am Sharon and I thought I would tell you about my Husband Eric and his journey so far.

In September 2011 while living in Bulgaria I started noticing that he was having trouble walking and needing to sit down after a few steps to get his breath back and relieve the pain in his legs. We went to the Gp and he sent him to the heart hospital where he was diagnosed with Intermittent Claudication caused by heart failure. This went on for 18 months and 3 further visits to the Gp and heart unit. We changed Gp when he started getting worse and had a dramatic weight loss, blood tests were done immediately and within a week he was diagnosed with multiple myeloma. He was sent to Plovdiv hospital for chemo and had 4 cycles of CyBorD when he got swine flu, he was rushed back to Plovdiv at deaths door and this is when they noticed a dramatic change in his heart. After clearing his lungs which took 8 days he was transfered to the heart hospital and this is when Amyloidosis was first mentioned.the Cardiologist advised us to return to the Uk so he could get a firm diagnosis at the NAC. Within a month we were back home in Yorkshire and he was seeing the heamotologist at our local hospital who made the referral to NAC where AL Amy was diagnosed with kidney, spleen and heart involvement and they took over his care.
He was invited to go on the Milleniumm Trial and after all the testing , he was randomised for the Trial drug, we were both so excited and full of hope and Eric couldn't wait to get cracking. The drug was administered at the Royal Free and we had to go every 2 weeks for blood tests, that has now gone down to 4 weekly vists and he is mid way through cycle 6..
I can honestly say he is like a different man to the one that stepped off that plane last April, he's not 100% and no doubt never will be but his energy levels are up as is his weight and he is just much more relaxed and looking forward to holidays and his new car that he's just ordered.
The side effects of the drug have been minimal and ever so gentle compared to the CyBorD, but to be honest he didn't find that too harrowing either. His FLCs are down from 163 to 31.1 and there has been a significant improvement in his echocardiogram results.
He is due for his NAC appointment this Thursday where we hope the good news continues.
I would love to hear from anyone else on the same trial.
Thanks for reading.

[Helen33]

Dear Sharon,

How wonderfully encouraging it is to read your story.  Thank goodness your hubby is responding well to the trial drug.   I wish I had the opportunity to try the drug rather than another lot of chemotherapy.  I may make some enquiries.

Wishing your husband all the very best and hoping that he will be able to live a good quality of life for years to come. 

[patpinchin]

Hi Sharon,

Good to see you here. Another cracking good post for Easter Day. All of us will be encouraged by such a positive outcome for a story with such a scary start. Such a relief you finally got the advice that led you to the NAC. Are you able to say which drugs are involved in the Millenium trial?  Great that the treatment has been gentle in comparison to Eric's previous regime. A speedy reduction in FLCs and a cardiac response are indeed promising especially as the latter is sometimes not seen until a while after treatment has finished. Good luck to Eric for a continued good response that will hopefully be prolonged. Hope you both enjoy a welcome holiday and the new car. 

[Lesley]

Sharon lovely to hear. Great news. Lesley x

[Sharona58]

Hi Pat
The drugs he is on are MLN9708, 4 mg on days 1,8,15 and Dexamethasone 20mg on days 1,8,15 and 22.