Hello!
new here, I’m on this trial and just wondering at others experience? My nurses and triage team are awful at getting back to me etc, I had a reaction to one of my meds 2 weeks ago, co-trimaxazol
head to toe rash, took them 2 days, numerous phone caljs and emails from me for them to stop it and prescribe the yellow paint medicine instead, and finally antihistamines and centreban, all stad Wednesday finally got meds Friday, I even went and was left by a nurse to see triage on Wednesday , but they never came out,, antihistamines made me feel icky so went to have my anti-sickness,d they are now incompatible with tbe medicine so Monday I had to ring THEM, and inform them ♀️ today i rung on oncology triage and it was an answer machine! Left message, no response. Finally got through,, and they will notify radar team, I’ve had a sore throat overnight last night, no concern, monitor it, call back if needed or see GP, and they will inform trial that rash has come back— I have no faith,, I’m already terrified of this disease (diagnosed Dec) and now an infection could take me?
Hi Bettybo and a warm welcome to this corner of the Community although I am sorry to see you joining us and hear about your ongoing journey.
I am Mike and I help out around our various Blood Cancer groups.
I don’t have Myeloma but for some context I was diagnosed way back in 1999 at 43 with a very rare (8 in a million) incurable but treatable type T-Cell Low-Grade Non Hodgkin’s Lymphoma……. eventually reaching Stage 4a in late 2013 when a second, also rare fast growing type of T-Cell High-Grade Non Hodgkin’s Lymphoma was presenting….. with my main treatment between Oct 2013 to Oct 2025 (750hrs chemo, 45 radiotherapy zaps and 2 Allograft (donor) Stem Cell Transplants)
So although my Blood Cancer ‘type’ is different I most definitely appreciate the challenges of this journey rather well.
There are a few active members in the group at the moment so let’s look for them to pick up on your post with a number who have been on the RADAR trial.
You can click on the main ‘Myeloma Group’ title and this will bring up all the group posts. Have a look at the posts and as always you can hit reply to any post and connect in with the wider group conversations.
Sorry to hear about the challenges in contacting your clinical team……. communication tends to be very different Heath Board to Health Board.
Based on my long experience with good teams….. at times I still had to make use of 111 especially in the evenings and at weekends as I found that this tended to open doors…… often after having to go to A&E and go through triage where the on call Heamatology Team were contacted or I was sent to the Heamatology ward.
I do hope that things improve for you soon.
Always around to help more or just to chat.
