Hi Gill,

I do hope that you both find next Xmas with Stephen in a position where the medics have found a treatment that is keeping mm at bay. I understand your concerns re dex and attitude etcetera… I hope that Janet never has to feel as you do now and I will certainly try to ensure that is so… but who knows?

I have said it before and I…[Read more]

I got through 7 cycles of Velcade and was told I didn't need the 8th because I had been at 0 all round for 2 months…. that was October 3rd… on January 9th I was told that I had relapsed (and that my levels had started rising almost immediately).

I have heard of people getting a good remission from Velcade but it seems it only worked for me…[Read more]

Hi Only Me
good to hear the good news about your mum,it is amazing the way things turn round from someone being so ill,and then responding to treatment,its just finding the right treatment.:-)

I think it,s very important to be positive,and to try to lead a normal life as possible,every one has there down days,and as you say there is only one…[Read more]

Hi Val

Well Done on keeping the MM monster at bay 😎 its not good news its bloody great news and I thank you for reminding me that the Dr's are wrong its not the 5 its well over the 5 😀

As for iccle ole me I dont have probs wi me legs?? BUT my Young Bride Elaine says I do on a friday Nite :-0 am sure I dont know what she means Lol…[Read more]

Hi Val

My hubby suffers with his legs,not so much cramp or even PN, just very painful,they feel very hard around the calves,I massage his legs as much as possible to take some of the tension from the calves,plus walking seems to help,it seem his leg problem is more effected with the cold.
I will not tell you what Slim suggested,but it had to…[Read more]

Hi Helen

Had my transplant in February 2011 and we seem to have had a similar recovery history. I don´t know why my specialist thought I was too "fragile" to carry on with Revlimid although I had lost over 10% of my body weight and generally felt rotten and miserable – also tingling feet etc. My dose was 20mg which I felt was too high but we…[Read more]

Hi Helen and John

Hope you are both doing well so far 😀

Well as for Johns hair and the need for a leccie shaver, its when it starts to grow back, if like mine it looked like the preverble hedge that was dragged through another preverable hedge :-S then the leccie shaver kept it bald till it started to grow back something like 😎

Hope…[Read more]

Hi Michele

I can relate to your problem,as we are in the same position,at last we have remission,and waiting on Kings to see if my husband is suitable for SCT,his consultant says although very fit has had pneumonia which has damaged his lungs,so feels it might not be in his interest,but has told us to go to kings,they are the experts,so we…[Read more]

Hi Amelie and Helan
Yes, I am in the UK Amelie and as Helen explained I was on a drugs trial and so was provided with Revlimid. What treatment are you on Amelie?
To be honest I´m not really convinced that the Revlimid was to blame but I just never seemsd to "bounce back" too well after the SCT but I do remember that I was just beginning to…[Read more]

Hi – hope the meds are helping with the bone pain. Regarding the tingling feet etc – I have had this for about a year since I have had all the Chemo – lots and lots including Velcade and Revlimid. I describe it as having an electric current though the soles of my feet and although irritating can´t say mine is too bad as the back and general…[Read more]

Chrissie, so very sorry for your terrible loss. I lost Michael to cancer (brain tumour he was 42) twenty years ago. That terrible grief does pass please do believe me and hang on. The best advice I was given was as follows: Concentrate on just breathing and eventually the rest will follow, and don´t on any account make any serious decisions…[Read more]

Hi Clara

Great to hear from you and am pleased your Dad is doing great 😀

is your Dad due to or had a Stem Cell transplant?, and its great to read you are another "Onwards and Upwards" Family 😎 its the best way.

Keep in Touch and give your Dad my Regards and a well done hand shake please 😎

Love Tom "Onwards and Upwards" as…[Read more]

Hi Bridget
Do not understand it myself LOL loosing the plot I think:-P Eve

Dear Gill what reason do they give for keeping Stephen on Dex? I know it helps a lot with pain relief but there are other drugs that would work too. I am now on Prednisalone which is as effective as Dex but much kinder I havent felt like tearing lumps of anyone since I have been n it . I would have a word with the specialist nurse and explain how…[Read more]

Hi Gill

Gill you should never feel like that,this is when you need this site the most,because it,s hard to talk to family about it,and most of us carers have earned are stripes with DEX.:-/

I am able to say to Slim is it the DEX talking or Slim and he does calm down,its a bit harder in public ,when he makes a remark that,s uncalled fore. I…[Read more]

Dear Chrissie I am so sorry David lost the fight against this wretched illness , he fought hard with you by his side Dont have regrets savour the lovely memories you have David will always be with love Bridget x

Hi Clara its good to hear from you and brilliant to hear your dad got such a good result after his treatment. Now you can all get back some normality in your lives and relax , after all the stress of last year you certainly deserve some fun.Happy new year to your dad and all your family love Bridget x