debontheweb replied to the topic Stem cell transplant booked for Wednesday 9th July 2014 in the forum Treatment 10 years, 6 months ago
Thank you hat is most helpful xxxx
debontheweb started the topic Stem cell transplant booked for Wednesday 9th July 2014 in the forum Treatment 10 years, 6 months ago
It’s only a few days now and I am pretty anxious. I have been through two rounds of DT-PACE now and the time has now come for my SCT. Please could anyone offer me any last minute advice. Is there anything I should remember to take into hospital with me? I am being treated at UCLH. My myeloma seems to respond pretty well to treatment but the…[Read more]
debontheweb replied to the topic Any experience of DTPACE? in the forum Treatment 10 years, 7 months ago
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]
debontheweb started the topic MUK five trial have you any experience of taking Carfilmozib (Kyprolis). in the forum Treatment 11 years ago
I have been excepted on to the MUK five trial. Has anyone else started on this trial or taken Carfilmozib? I would be very grateful for your experience.
Thank you
Deborah
debontheweb started the topic It all seems a bit of a gamble – Any help appreciated. in the forum Treatment 11 years ago
A year ago today, just a few days before my 50th birthday,I was diagnosed with full blown myeloma and started on the PADIMAC trial. The velcade did a great job even after just two cycles, although unfortunately, I had very painful neuropathy and it too me a long time to get myself off the Fentanyl patches I was given for the pain. I have had few…[Read more]
debontheweb replied to the topic Velcade…………..ups and downs !!! in the forum General 11 years, 10 months ago
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]
debontheweb replied to the topic Just got a diagnosis in the forum Newcomers 12 years ago
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
debontheweb replied to the topic Just got a diagnosis in the forum Newcomers 12 years ago
Thank you I have just looked it up looks great!
debontheweb replied to the topic Just got a diagnosis in the forum Newcomers 12 years ago
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]
debontheweb replied to the topic Just got a diagnosis in the forum Newcomers 12 years ago
Thank you
debontheweb replied to the topic Just got a diagnosis in the forum Newcomers 12 years ago
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]
debontheweb replied to the topic Just got a diagnosis in the forum Newcomers 12 years ago
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
debontheweb replied to the topic Just got a diagnosis in the forum Newcomers 12 years ago
Thank you everyone for your kind replies. Yesterday I was back for my app at UCL I ended up having a bone biopsy, chest X-ray (due to rib pain) getting info about treatment options and a load of tablets,
The tablets I need to start today are Dexamethazone 20 x 2mg/day for 4 days, Ranitadine and Allopurinol. I am worried they will make me feel…[Read more]
debontheweb started the topic Just got a diagnosis. in the forum Newcomers 12 years ago
Hello there
Sadly on Monday I received a diagnosis of Myeloma. Tomorrow I go back to the hospital to discuss treatment options and the next day it will be my 50th birthday. Somehow I don't feel like celebrating. I am trying to make sense of it all but the treatment sounds so scary and I feel so tired and mentally drained. I am in a good place…[Read more]
debontheweb replied to the topic Related Conditions. in the forum Related conditions 12 years, 4 months ago
Hello
I am 49 yrs old and I have smouldering myeloma. I feel like admitting that is like going to alcohol anonymous! I am under Prof Yong at UCL so I'm in good hands. At the last count my plasma levels reached 39. I have just had an MRI scan and go back to see Dr Yong again on the 30th. I am symptom free but my mental wellbeing is suffering.…[Read more]