Hi

I have lived with myeloma for 4 and a half years diagnosed at 47 2013..i am now 51…same start as your sister..6 months on first chemo..then 2 weeks at the Freeman hospital Newcastle for stem cell transplant and high dose chemo…about a week before the stay in hospital your sister will “be hooked up to a machine to have her stem cells…[Read more]

Hi Pauline

My pp was around the 40 mark if i remember rightly when it came back last summer but I knew it had come back with the symptoms I got again …out of breath tired etc etc …and yes if there’s anything I can tell others is to enjoy the remission time.51 in Sept so can’t hang about so I am enjoying my simple life I have now tailored for…[Read more]

Hi and welcome to the site 🙂

I was diagnosed Oct 2013 had 6 month tablet chemo them 1st stem cell April 2014..I then had2 years good remission until around summer time 2016(pp rose very quivkly in my case so then i was put on the velcade for 6 month followed by 2nd stem cell transplant over the Christmas and new year 2016/17..I am now in…[Read more]

Hi claire..The mini allo sounds okay to me…well better than full 🙂 …claire it took me a full month when I got home to get the second hospitalization out of my mind. Think because I caught a cold/virus in there and was given penicillin that literally within a minute my body showed me and the nurse who administered it that I was allergic to…[Read more]

Thanks Greg. ..Every bit of info helps me..my consultant said the same to be honest and the letter she wrote to my g.p of which I received a copy basically said what you have said..she highlighted quality of life rather than remission time.but there again they have to give us worst case scenarios . ..I know i have been very lucky with my remission…[Read more]

Thanks scott your advice and knowledge of the allo is very helpful to me… the more info I get the better so I can make my choice…no mini allo was mentioned to me at my last meeting in January with my consultants so I will defiantly be asking about that …saying that they only have half an hour to tell me the worst of what can go wrong and…[Read more]

Hi Claire…yes I know what you mean but I have to know the truth from people who have gone through it..but like we all know with this cancer it is so individual and what is good for one maybe bad for another..maybe they won’t find a doner for me so then my choice will be easier..yes they have to do the allo shortly after the auto for the best…[Read more]

Thanks for your reply Kevin…yes keeping positive is good for the mind and soul 🙂 I have changed my diet radically over the last 2 years of the 3.5 years of having mm..that really helped me..gotta live with my unwanted tenant but hes not getting all his own way 🙂

Take care all

First of all thank you both so much for sharing your personal experiences with me..it means a lot believe me as these are the things I need to know from people who have actually been through it for real..not just script and verse from consultants (fantastic as they are) who have told me the pros and cons from the stem cell transplant manual 🙂

I…[Read more]

Hi Jason. .yes the timescales are about right as Kevin said…Ive just had my 2nd stem cell transplant over Christmas. ..I started velcade may 2016 for 6 months then stem cell transplant December 2016..

I had 2 years good drug free remission after my 1st stem cell transplant in April 2014…

Kevin I see you had really good remissions. .is there…[Read more]

Hi Claire

Hope all is well..I was on velcade and the dreaded steroids for 6 month before my second transplant over Christmas. .I am back to see consultant at the end of this month to talk about allogeneic transplant..Ifeel able to discuss it now with a clearer head. .as I was only out of hospital 3 weeks when I had an outpatients appointment to…[Read more]

<p style=”text-align: left;”>Hi Ann. .yes it’s difficult but it was the next step on the ladder of treatments they offered me..As they kept saying I was young enough to have it a second time…I kept saying I don’t feel young especially with what they do and put into me…yuk!! But it puts the little devil back in its box and I to be honest I get…[Read more]