Hi Ellen…can you pass on our thoughts and prayers to Keith and Sue at this very difficult time…Phil and Jan

Hi Andy and Steph…great news…as I have said before…"kick them pp's between the legs"…keep the ball rolling and enjoy your "jollies"…stay safe…Phil

Hi Tom …hope all goes well with your SCT… and you "kick it between the legs"…stay safe …Phil

Hi Charlie and Mary…Neutrophils are the part of the blood that protects you from infection and nasty bugs…usual reading should be between 2-7…mine have peaked at 1.83 and lowed at 0.88…if they sink under 1.0 you are declared as being Neutropenic ( susceptible to infections etc) and I take a more cautious attitude to personal hygiene ( as…[Read more]

Hi Charlie and Mary…not been on for a while laptop lead got ate by the rabbit waiting for a new one delivering.. I was allowed home as soon as my neutrophils reached 0.5..I was still very weak and experiencing vomiting…but everybody reacts differently to SCT ( and recovery from it ) and much of the advice given I can only endorse…hopefully…[Read more]

Hi Dai…wow as they say up here in Leeds "youv'e bin thro mill auldpal".what a terrible introduction to this horrible disease.You would think the NHS would have protocols and procedures that they MUST follow so that people do not slip through the net… and that patients irrespective of location and illness are treat with dignity and care…which…[Read more]

Hi Babs…celebrations in order for you and your stem cells…hope you have many more birthdays…well done…stay safe…Phil

Hi Peter….excellent news …keep the ball rolling…stay safe…Phil

Hi Jackie..it is a maintenance trial of drugs to see if some combinations are better than others and perhaps it would be better to ask your mums consultant at your next appt…link below to info on it…[Read more]

Hi Rebecca…only advice I got was to drink about 3 litres of fluid per day…no-one has ever mentioned a dietary regime…stay safe ..Phil

Hi Laura…welcome to the forum…I had an SCT in Jan 2011 after 5 sessions of CRD and am in Stringent Complete Remission…what you will find is that everybody's journey with mm is different and especially SCT and treatment…some cope ok but others find it more difficult…if you are unsure about anything write your questions down as you go…[Read more]

Hi Jackie…no I am not and fortunately didn't need to go on dialysis…I have just recently had a break from the myeloma x1 trial for three weeks due to poor readings of my liver…I went for my monthly review last week and my bloods and liver had recovered enough for me to go back on the trial….so it may have just been a blip…best wishes to…[Read more]

Hi Rebecca…as far as the wife and I can remember my kidneys gradually started to recover more or less as soon as I started the CRD treatment and have plateau'd now for the past 20 months ( roughly) …hope this helps…stay safe…Phil

Hi Rebecca …I suffered from acute kidney failure due to mm in Jul10…my kidneys were only 10% efficient.My light chains were in the thousands and my paraprotein levels were at 19…I had 5 courses of CRD which brought all readings down to normal or nil levels…I then had an SCT in Jan 2011 and have been in Stringent Complete Remission…[Read more]

Hi Ted…I have arthritis in both knees and got as far as seeing the consultant to replace my right knee…but once he looked into my mm history and my low blood readings or as they call it "compromised immune system" he ran a mile and flatly refused to do the operation…he seemed really scared that I may not be able to fight any infection…[Read more]

Hi Jackie…sorry to hear about your mum…I was diagnosed with mm in jul2010 and also suffered acute kidney failure (kidneys only 10% efficient)when the mm decided to start it's nasty work…I had an SCT in Jan2011 and am now part of the Myeloma x1 trial…I am now in Stringent Complete Remission (lovely words ) and my kidneys have recovered to…[Read more]

Hi Vicky and Colin…absolutely ace news…well done…stay safe…Phil Jan and Sam

Hi Tom…well done on your bloods young man…know the feeling only too well…gotta go for mine doing every month with being on the Myeloma x1 trial and my blood consultant said to me on Weds " I have got you exactly where I want you "… went to see my kidney consultant today and he said "all readings are where they should be"…gotta go back…[Read more]

Hi Carryanne…just picked up on your post regarding reducing risk of infections…I am 2 years post SCT and have had 5 infections in that time that required hospitalisation…a lot of it is down to common sense and family responsibilities….I keep away from anyone who has a cough…cold…sniffles …anything really…my family are all aware of…[Read more]

Hi Lesley…my story is very similar to Helen's experience of myeloma….diagnosed in Jul 2010 after kidney failure…5 cycles of CRD then an SCT in Jan 2011 and am now still in stringent complete remission… I too am part of the myeloma x1 trial and am in my 20th cycle of Revlimid..albeit only 5mg daily as any stronger "knocks my bloods for…[Read more]