[adamsp41Participant]

Hi Scott…good luck with your SCT…everyone reacts differently (as you will know)to the process and some have a bumpy ride and some not so bumpy…stay positive and as Jo says it is doable…hope your collection goes smooth…my collection was 3 days at 5hrs plus a day ( little buggers didn't want to leave :-)stay safe…Phil

[adamsp41Participant]

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

[adamsp41Participant]

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

[adamsp41Participant]

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

[adamsp41Participant]

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 Vicki says earlier in this post )I am doing well thank you ( fatigue and tiredness still an issue) …I had my SCT in Jan 2010 and am in Stringent Complete Remission…I see my consultant every month as part of the Myeloma x1 trial so my bloods are regularly monitored…I have a new lead for my laptop so no more ipaddy thingymibob…gotta have fingers of a 5 year old to work it…stay safe…Phil

[adamsp41Participant]

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 Charlie will have a speedy recovery.. apologies for any mistakes been using my sons ipoddy paddy thing..stay safe..Phil

[adamsp41Participant]

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 in your case they clearly failed…opens your eyes that perhaps the NHS is not all rosy as some think….up here in snow logged Leeds I like Ann and Pete can only praise my GP and consultants (both kidney and haematology) as all I have received is 1st class treatment…hope the future is not as distressing…stay safe…Phil

[adamsp41Participant]

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

[adamsp41Participant]

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

[adamsp41Participant]

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

http://www.cancerresearchuk.org/cancer-help/trials/a-trial-looking-lenalidomide-bortezomib-myeloma-non-intensive-treatment-group-myeloma-XI

hope this helps…stay safe…Phil

[adamsp41Participant]

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

[adamsp41Participant]

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 along and check with the consultant or myeloma nurse ( if your dept has one )on your next appointment and ask for all associated leaflets dealing with SCT..if not ask the team on this website…they are really helpful…good luck heading for remission…stay safe…Phil

[adamsp41Participant]

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 all…stay safe…Phil

[adamsp41Participant]

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

[adamsp41Participant]

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 since…my kidneys have recovered somewhat and now hover around 46-48%…I did not have any dialysis…hope this helps…stay safe…Phil

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