Thank you hat is most helpful xxxx

I have just been through one round of DT-PACE and am due to start another round on Wednesday. I am being treated at UCLH. After the first round I was requested to book into Ambulatory care as I live more than 40 minutes from the hospital. I thought they were being rather over cautious booking me in to the NHS hotel just in case I got an infection…[Read more]

Sorry everyone if it looks like Ive replied several times but felt I had to reply to you all individually. As you can see Im very new to this site! Has made me smile today though

Hi wendy
I'm am scouting around on this site with interest. I recently had CTD and stem cell harvesting and am debating whether to go ahead with transplant yet or not. I was interested as to what you said about FLC. on diagnosis my lambda flc were only 64, now after CTD they are 237 with PP less than 2. I wondered whether CTD caused the increase…[Read more]

Hi to you two

Thank you for your reply and support. I apologise for not responding sooner but life has been a whirlwind since diagnosis. As an update I have had CTD and stem cells harvested and now deciding on whether to proceed with transplant yet or not. I do read this site on a regular basis and hope to give more input myself. It is…[Read more]

Thank you very much for your reply and I would like to firstly apologise for my very slow response. Unfortunately since diagnosis everything has been a complete whirlwind. As an update I have managed CTD and stem cell harvesting and on course for a transplant but havent decided whether to have this yet or not. I hope you are well and hope to be…[Read more]

Hi Jo

thankyou for your reply and I apologise for my very slow response. As an update I have had CTD and stem cells harvested and am now inline for a transplant in which I am still considering whether now is the best time. Its certainly a journey I never would have envisaged for myself but I have managed so far and have realised that this will…[Read more]

Hi there Andy

Im sorry for such a delayed rsponse. Since being diagnosed life has been a whirlwind. Just an update for you, I have had CTD and stem cells harvested and currently in line for a transplant in which I am trying to decide whether the time is right at the moment. I shall keep in touch and read this site regularly. I hope you are…[Read more]

Hi Tom
sorry for such a late response. Life has been a complete whirlwind since diagnosis. Just to give you an update I have had CTD treatment and stem cell harvest and am due to have a transplant but havent decided as yet when I should have this. Thank you so much for your reply and support and I promise I will try to keep in touch.

Maria

Hi Ange

sorry my reply is so late. Since diagnosis everything seems to have been a bit of a whirlwind. To date I have managed my CTD treatment, have had stem cells harvested and am trying to make a decision about transplant! I wondered how you are getting on? We seem to have a bit in common with having a 13 yr old, working in hospitals etc..…[Read more]

Hi Trish

I am on the PADIMAC trial and have had 10 Velcade injections. My paraproteins have gone down significantly and I am very close to complete remission. Unfortunately I have Neuropathic pain in my arms, legs and fingers so my chemo has been put on hold for now with the hope the pain will reduce and I can then go onto cycle $ with perhaps…[Read more]

Thank you Helen you may have just saved my life as I am coming down from a large dose of steroids and feeling very low and despondent. Fingers crossed we will all get through this.

Best Wishes and Take Care

Deborah x

Thank you I have just looked it up looks great!

Dear Megan

Thank you so much for the useful information. It looks like that as long as all my pre tests are ok and I sign the consent form I will start the first line of treatment on jan 28th.
I am hoping this will hold off the need of the stem cell replacement for some considerable time but it all seems a bit of a lottery!
I have heard a…[Read more]

Thank you

Hi Jo

The lister is also my local hospital. I live in Hinxworth near Ashwell but work in Stevenage old town not far from the Lister. I am just trying to work out the logistics of travelling down so often although I am reassured by the things people have said already. I have also looked at the option of my husband driving down and parking at…[Read more]

Thanks Tom UCL seems a great place if you do have to go anywhere. I shall look out for you No doubt it will become my second home soon
Deb