Hi Gill
I would love to help but am not so good on the computer
I followed the links and it came up Virgin something or other is this safe to give out my credit card?
I get so sad when I see the children with cancer. I was 55 my husband 57 when our lives changed due to MM
Anyway if you don't reply I will wait until my son visits and ask…[Read more]

Hi Gill
Thank you for the welcome I really needed to talk at the begining of this new relapse after so many years of going it alone. I am so happy I have found this site. One can't moan to family friends or neighbours I think they would soon get fed up with it. Also I have found out so much info from reading all the notes on other subjects.
Not…[Read more]

Hi Dai
Thank you for the lovley long email and so much info' I would like to tell you I watched your utube performance. I am so sad to hear you are a bit down at the moment but Rev Dex lasted over 50cycles for my husband before he relapsed let's hope it lasts a long time for you so that you can get the trial you want.
This trial, AKT/vel/dex I…[Read more]

Hi Eve
Yes I did go a long time before finding this site and I wish I had found it at the very begining I am sure I would have coped a lot better and not had so many dreadful days along the way. As you said the old life is in the past and this is the new one so enjoy your walks and hope the NW winds don't blow you away.If you can give any ideas…[Read more]

Hi Helen
Yes it was a bit nippy but today it is plus 15. Since moving from London to Toronto I have never experienced such a strange winter. I am not complaining as the older and crankier I get the less appealing the cold and snow have become.
Anyway the trial. And what a trial it was. I will ignore all the bad things that happened(driving wait…[Read more]

Hi Helen
I'm glad you understand a bit about the akt inhibitor.Peter is still really tired and in a lot of pain. Bridgit recommended some pain killers. So at the pain clinic we asked for help and were given hydromorphone(?) and tylenol it has eased the pain. We are off tomorrow to see if we can start the akt trial. All results so far are fine…[Read more]

Hi Dai
Just thought I would let you know that my husband Peter was on rev/dex for over 50 cycles. After the first cycle his mm was undetectable and remained that way until this March
So I hope you have the same results I do know others that have gone out longer here in Toronto not sure about world wide.
So good luck with everything and I hope…[Read more]

Hi Mavis,
There is a long list of words to describe the first feeling when given a diagnosis of MM scared being just a mild one,
My husband was diagnosed in 2004 and has had four years in remmission now on Revlimid. There are a lot of treatments out there and once they find one to suit him I hope he gets a long remmission time.
Telling family…[Read more]

Hi Andy
Haven't heard about your treatment but recognize several of the drugs. So good luck with this aggressive treatment and you make sure you give that nast MM a good talking too and make sure it gets up and goes.Love Teresa

Hi Mavis
When MM attacked my husband's body it also entered my life. So I guess I use we because it's a fight we are both in.I quit work in 2004 when he was diaganozed and have been beside him ever since.I know he bears the brunt of it all but it shares it out about if I say we. A bit like me sharing on this site. You mentioned had I been on the…[Read more]

Hi Bridgit
Five and half years with MM and not much of a break from it must be absolutly terrible.I am so sad they can't find anything to give you a long time release from it all.I am sorry to hear that you are useless to the trial organizers that is a horrid word and none of us are useless even the trial people could use something you have to…[Read more]

Hi Stuart
I do hope I haven't done anything to cause your computer problems. I am useless on the computer and it took me ages to figure out what to do and even now I am not sure how it all really works. Others have asked if I have checked out the beacon etc and I really don't know where to start.It would be lovely to send a photo attached but I…[Read more]

Hi Helen,
You asked what an AKT trial is.I am going to copy the info straight from the form Princes Margaret Hospital gave to me:
A phase 1b study to evaluate safety and tolerability pharmacokinetcs and pharmacodynamics of the oral AKT inhibitor adminitered in comination with bortezomib and dexamethasone in subjects with relapesed refractory…[Read more]

Hi David Helen and Bridget
Thank you so much for replying to my note. I am not feeling so overwhelmed anymore. We have just heard we do not qualify for the pomalidomide trial as we have been off velcade for more than 6months.
We are waiting to hear about the AKT trial, it depends on the results of the bone marrow biopsie MRI etc
It'a amlost…[Read more]