debontheweb replied to the topic Stem cell transplant booked for Wednesday 9th July 2014 in the forum Treatment 10 years, 9 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, 9 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, 11 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, 3 months 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, 3 months 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 12 years, 1 month 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, 3 months 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, 3 months 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, 3 months 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, 3 months ago
Thank you
debontheweb replied to the topic Just got a diagnosis in the forum Newcomers 12 years, 3 months 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, 3 months 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, 3 months 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, 3 months 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, 8 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]
