[adamsp41Participant]

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 post-op …so physio and gel it is then…hey-ho…stay safe…Phil

[adamsp41Participant]

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 46-48%(my Kidney consultant is over the moon )…so there is light at the end of the tunnel…I found taking the hurdles one step at a time helped me immensely…Myeloma uk are a good source of info and comfort if you have any issues…love and best wishes to you and your mum…stay safe…Phil

[adamsp41Participant]

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

[adamsp41Participant]

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 next Thurs for a recheck on bloods and whether I am to be kept on Revlimid (causing a problem with my liver)….but so delighted we are looking at booking Barcelona for a short break and take our 16 year with us to take in Barca v Sevilla on 23/02…tell ya what old pal might even have a vodka or two myself …pats on the back for us both…stay safe…Phil Jan & Sam

[adamsp41Participant]

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 this restriction and if I don't see my kids or grandkids for a couple of weeks then so be it…my friends are aware as well…I always ask is everyone well in the family before a visit…also…keeping away from crowds(we tend to do our shopping early morning)and using hand gel ALL the time is a comfort also when anyone visits our house we urged them to hand gel…your lifestyle just requires a little fine tuning but as Vicki says it is doable…stay safe ..Phil

[adamsp41Participant]

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 six"….found CRD and SCT exhausting and suffered from sickness mouth ulcers and diarrhoea and still suffer from fatigue and tiredness…but have managed quite a few holidays both UK and abroad…infections allowing 🙂 ….like most people on this forum we all have different reactions to the treatment …some seem to suffer more than others…but there is light at the end of the tunnel so stay positive and good luck with your treatment…Phil

[adamsp41Participant]

Hello Susan and welcome to the discussion board… I was diagnosed with MM (asymptomatic) in Jul 2009 which became symptomatic in Jul 2010 resulting in acute kidney failure …like you…I was put on CTD for 5 cycles and had an SCT in Jan 2011…and have been in Stringent Complete Remission since…I too was told that basically I had no alternatives open to me but to have an SCT…what you will pick up from other MM'rs who have had SCT is that every single one of us copes with the whole process in totally different ways…some do not find it too difficult …but others struggle…some respond quickly…others more gradually….but stay positive and do not be afraid to ask anybody any questions (I write them down as I go along and bombard my consultant at our monthly meetings)….possibly the best advice I can give is to have a chat with your Clinical Nurse Specialist and discuss each stage of the process and tackle them one at a time…do not get to bogged down with something that is coming along in a few months…you can then focus on one thing at once…stay safe and good luck for the future..Phil Jan and Sam

[adamsp41Participant]

Hi Suzy…hope hubby is doing well see my previous post

http://www.myeloma.org.uk/patient-services/discussion-board/side-effects/red-itchy-eyes-post-sct/re-red-itchy-eyes-post-sct1/

As you say my consultant too was not at all concerned with the damn itching …but good luck and stay safe hope hubby copes well with post SCT ..Phil Jan and Sam

[adamsp41Participant]

Hi Keith…can sympathise see my post reply

http://www.myeloma.org.uk/patient-services/discussion-board/side-effects/red-itchy-eyes-post-sct/re-red-itchy-eyes-post-sct1/

hope you find a solution…Phil Jan and Sam

[adamsp41Participant]

Michele…great news… well done… sure we will all have a tipple or two to celebrate…keep it up and have a great Christmas..Phil Jan and Sam 🙂

[adamsp41Participant]

Hello Dai… just caught up on this post…don't know too much about the Bendamustine regime …all I can say is I hope it works well for you …I am sure the consultants have your best interests at heart…I too am on the Revlimid path ( X1 trial ) and so far so good…stay positive and once again " kick it between the legs"…Phil Jan and Sam

[adamsp41Participant]

Great news Tom…hope the next 3 years are as successful for you and your little mates….well done old boy…keep it going …Phil Jan and Sam 🙂 🙂

[adamsp41Participant]

Hi Carol…so sorry to hear that the damn thing is back…I have never heard of PAD but I'm sure your consultants will have your best interests at heart with the next course of treatment…and you will soon be back on the road to remission…stay safe…love Phil

[adamsp41Participant]

Hi Chris and Lena..don't despair too much…I remember my neut's got "stuck" for a while and then they took off like a missile ( or so it seemed at the time )keep positve and enjoying the tv …I had loads of Dvd's to watch…ended up with square eyes 🙂 stay safe…Phil and Jan

[adamsp41Participant]

Hi Vicky and Colin…good news on the neutrofil no's increasing …not long now before you will all be home ( hopefully)…I remember being sent home when mine reached 0.5 and I felt really really ill…but after week at home I felt somewhat better and the corner had turned…good luck to you both…stay safe…Phil and Jan

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