[adamsp41Participant]

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

[adamsp41Participant]

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 the risk of infections and also if any throat problems occur post SCT..I found flat warm coke was the best mouthwash for me ( sounds strange but it worked ) …also Colin asked if he would ever board a plane again …well..I had my SCT in Jan 2011 and am due to fly to sunnier climes this Sat for 7 days…wooo-hooo…best wishes for the future…stay safe and good luck…Phil

Biker Chris…good luck today mate …go kick it between the legs…Phil

[adamsp41Participant]

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

[adamsp41Participant]

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 remission ( lovely word that)and on the X1 trial… and…on sat morning the wife and I did guess what…yep you got it… put a new felt on our shed (photo's available free of charge :-)) …stay safe and take it one day at a time…Phil

[adamsp41Participant]

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 from fatigue so severley but perhaps have other side effects…tell your Dad he is not alone and do as your body tells you if you need to rest then rest…as my nurses have always told me you WILL get better…wish your Dad well…stay safe…Phil

[adamsp41Participant]

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

[adamsp41Participant]

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 started CRD immediately went through 5 cycles responded well and had an SCT in Jan 2011 (dialysis ruled out )…my kidneys are now functioning at 46%-49%..I am now on Myeloma X1 trial and am in stringent complete remission.I can relate to the feelings and emotions you are experiencing as I had many similar….but…head down kick the damn thing right between the legs and look forward to eventually going on some hols…(infection dependant )I try to get away as much as possible …ok not the places I would want to go but there has to be a compromise…head up and as you say …you will win ..Phil

[adamsp41Participant]

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 others struggle…best advice I got was from my clinical nurse…he said that it is best to take it one stage at a time and don't look too far ahead as you'll get yourself all mixed up… as Eve and Vicki say one day at a time and you will get there…may be bumpy but your hubby will get there…good luck…Phil

[adamsp41Participant]

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 random…wish your dad well in his recovery…Phil

[adamsp41Participant]

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 none of them took it away completely…and lo and behold woke up one day and hey presto the itchyness had gone….strange happenings post SCT 🙂 …good luck with a solution and stay safe ..Phil

[adamsp41Participant]

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

[adamsp41Participant]

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 went through exactly the same treatment as your mum and had my SCT in jan 2010 and at the the moment am in Stringent Complete Remission… so stay strong…. there is light at the end of the tunnel…the drugs your mum has to take may knock her for six…but as my nurse said when having my SCT …you WILL get better..good luck and best wishes to your mum … stay safe…Phil

[adamsp41Participant]

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

[adamsp41Participant]

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 🙂

[adamsp41Participant]

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 …stay safe…Phil 🙂

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