Mavis…brilliant news …long may your remission last…Phil

Hi Sarah and Henry…I too like Tom unforunately suffer from infections 6 since Jan 2011 5 of them requiring hospitalisation and have been told at ALL times to contact my Haematology team 24/7 with any worries whatsoever as my consultant says it's their job to decide what is wrong me and so far have always been treat by them…just wonder if…[Read more]

Hi Vicki and Colin…I had my SCT in Jan 2011…and the wife and I were discussing my Neutrofils prior SCT and we think they were about 2.8 ish and after 5-6 days post SCT they were rock bottom at 0.01…gradually rising until on day 17 they had reached 0.5 and I was allowed home…it's like anything with this damn disease everybody reacts…[Read more]

Hi Chris…well done young man…keep up the good work…I suffered badly with Mucositis and vomiting and the trots and had no food or fluid orally for about 11 days…and …tried all the mouthwashes and a gargling solution to alleviate the discomfort to no avail…what worked for me and may be worth a try was flat coca-cola…I used it as a…[Read more]

Hi Vicky and Colin…best wishes for the future on your way to remission…from a sunny Ibiza…woooo-hooo…stay safe…Phil

Biker Chris… Hopefully your neutrofils will start to climb…albeit slowly…stay safe..Phil

Hi Chris…first post on this thread …good luck on your recovery…and "kick it between the legs" 🙂 …had my SCT in Jan 2011 and stayed in dock for 17 days…oh the sweet smell of sweetcorn…yuk…hope yours stay stays pretty good…keep safe..Phil

Hi Vicki and Colin…just picked up this thread and hope Colin's SCT is sooner rather than later now that the Stem Cells have been successfully harvested (at last ) …you seemed to have been through enough hurdles…just to re-iterate David's and Dai's advice regards visitors I would only let my wife and son visit me as I too was well aware of…[Read more]

Well done Andy…keep on "kicking it between the legs":-) …good luck in year 2…hopefully with a few more sun breaks…Phil

Hi Charlie.and Mary…just dropped in on this thread…and really hope all goes well in the future for you both …I am sure Charlie will come sailing through..everyone on here will think the same as we have all been through a rough journey…me personally ?…very similar to Charlie and am now 21 months post SCT and am now in stringent complete…[Read more]

Hi Nicola…the first thing I would say is that everyone reacts differently to the treatment…I was diagnosed Aug 2008 and had a SCT in Jan 2011 and am now in complete remission also I am Myeloma X1 trial….but….from day one to today I have suffered from fatigue /tiredness sometimes severe…but other people on this site seem to not suffer…[Read more]

Hi guys …well done Henry long may it continue…Phil

Hi Les…my journey with mm is almost identical to yours…I am now 58 ..I was diagnosed in Sep 2008 with asymptomatic myeloma and it decided to become active in Jul 2010…causing acute kidney failure…my kidneys were only 10% efficient.. my symptons being almost exactly the same as yours.It was touch and go if I was to go on dialysis but I…[Read more]

Hello Amanda…I too am on the Myeloma x1 trial..was diagnosed in Jul 2010 and had CRD for 4 months and then had my SCT in Jan 2011…and am on the maintenance arm of the trial only taking Revlimid and Bonefos and am now in complete stringent remission ..as previous MM'rs have said everybody reacts differently to treatment…some sail through…[Read more]

Hi Dilini…I too am on Revlimid as part of the maintenance programme after SCT and suffer from bad fatigue….the consultants have dropped it to 5mg a day (from 25mg)but this makes no difference and if I am tired I rest and if not I try to do a little more…I also kept a diary of when the fatigue was worse but it turned out that it was totally…[Read more]

Hi Sarah…as posted before post SCT (Jan 2011) I did have itchy neck and arms…used to drive me mad! I went to my GP was put on anti-hystamine 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…[Read more]

Hi Stuart..I use Chrome and am experiencing both large and small profile pics…Phil

Hi Ali…just a quick hello to say welcome to this little band of jolly fellows and gals…the best advice I can offer is to take one day at a time and ask …ask…ask…when your mum sees her consultant…when you discuss with your family write it down and ask at appointments…my case is almost a carbon copy of your mum's (I am now 58 )and I…[Read more]

Dear Nicola…there is nothing one can say at this tragic time but our thoughts and love are with you and your family…Phil & Jan xx

Hi Andy…welcome to the mm website…it will be a roller coaster for definite and staying positive will be a key factor in dealing with what will be thrown at you….every best wish for a long remission…stay safe …Phil 🙂

Hi Dai…I take "The Rev" as part of the X1 trial and have had to come off 25mg…down to 10mg and now am on 5mg as it kept knocking my blood results for six …I do not take anything else(except Bonefos)and the main side effect is as you say general fatigue….hope your treatment settles down and the side effects become easier to deal with…[Read more]