Hi Tom…excellent news long may it last…well done young man…stay safe…Phil:-D

Hi Tina…welcome to the site…I hope all goes well with your SCT and recovery is swift…I had SCT in Jan 2011 and am now in Stringent Complete Remission…although I experienced a "bumpy" ride a lot of people seem to cope a lot better…it is all down to the individual …each person's myeloma treatment seems to differ…I too am on the…[Read more]

Hi Sarah and Henry …WOW…absolutely amazed at the stem cell collection in one sitting ..mine took 3 days..5-6 hours per day..well done young man…good luck to your daughter in her fundraising activities..all of you keep up the good work…stay safe…Phil:-)

Hi Wendy…post SCT I did not have itchy eyes but had itchy neck and arms…used to drive me mad! I went to my GP and tried a range of creams to ease the problem Dermol,Doublebase,Fucidin and Hydrocortisone to name a few…also put moisturising lotion in my bath water…some worked better than others but I found than none of them took it away…[Read more]

Hi Eve and Slim…well done on getting to remission enjoy the cruise and hope 2012 is better for you both…stay safe…Phil

Hi Carol…I had an SCT in Jan2011 (my anniversary coming up wooooppeeee) and have been on the maintenance programme (MYELOMA X1 trial) and I started with 25mg of Revlimid but the damn drug knocked my bloods over so I was taken off for 2 months and am now on 10mg which hopefully my body will be able to stand…I too suffer like you from fatigue…[Read more]

Hi Glenn…post SCT my medical team have told me that there is no visible myeloma detectable for them to be able to measure…this is SCR (as far as I am aware)…as regards remission and complete remission I am unable to comment accurately…perhaps contacting myeloma uk infoline for advice would be a good option…regarding my SCT (remembering…[Read more]

Hello Glenn…sorry to hear that mm has affected you…I was diagnosed with Asymtomatic Myeloma in Sep08( I was 54)…which became "active" in Jul10 with acute kidney failure…had 5 cycles of CRD (Aug -Dec ) and a SCT in Jan11…which has put the mm in a status of Stringent Complete Remission …I am now on the maintenance programme of…[Read more]

Hi Vicky…I had my SCT 11 months ago and was in hospital for 17 days and was unable to eat or drink until the last couple of days(started on ice lollies and ice cream) and suffered with bad mouth and throat ulcers….but…what I found useful (apart from the mouthwashes that you are given) was flat coca-cola to gargle with…I found this cleared…[Read more]

Hi Debs…I am 11 months post SCT and have had 5 cycles of Revlimid @ 25mg (maintenance programme)but have been taken off it for 5 weeks due to low Neutrophils and Platelets…my bloods have recovered somewhat and I have now been put back on 10mg per day…but I have also too had nothing but coughs and colds since SCT….the consultants don't seem…[Read more]

Hi Gill..I was on RCD pathway for 5 cycles prior to my SCT in Jan 11…and my para – protein levels dropped from 16 to 0 (my light chains dropped to normal levels as well )…so it worked very well for me…side effects were tiredness/fatigue(this was a major problem)…slight shakes…itching…fingers locking up so for me fairly minor…[Read more]

Hi Ted…yes the CNS is the nurse who takes care of you… I too am under Dr Cooks team and attend monthly also on a wednesday…stay safe ..Phil

Hi Jim…I was diagnosed June 08 (I am now 58)…but the mm was asymptomatic until Jul10…when it became "active"…I followed the RCD pathway for 5 cycles until SCT in Jan11 …I have been on X1 trial since Jun11…and I have just been taken off Revlimid to give myself a break as it is causing Neutropenia…once my bloods stablise I will be back…[Read more]

Hi Alex…I am 9 months post SCT and am on 5th cycle of Revlimid post SCT (Myeloma x1 trial) …and I can relate to what John goes through (light headiness…feeling as if I am not in my body etc) but was successful in getting my mm to complete stringent remission…but on the maintenance programme the Revlimid has now caused my Platelets to drop…[Read more]

Hi Jet….I had my SCT in January 2011 and although as you say every transplant effects each individual differently I can relate to some of the side effects of the treatment as mentioned by other patients…my own personal journey with monster melphalan was whilst in hospital being sick and with diarrohea….mouth and gullet infection ( used 2…[Read more]