[adamsp41Participant]

Hi Scott…good luck mate and "kick it between the legs"….one day at a time and look forward to a long remission…Phil

[adamsp41Participant]

Hi all…e-mailed Sara on friday and got an e-mail today with questionaire this Weds…simples …Phil 🙂

[adamsp41Participant]

Hi Tom…I too suffered from a cough post SCT ..lasted 4 months and eventually cleared up on it's own…consultant and GP were not really concerned about it after I had undergone scans and heart tests which were all clear…see my previous post
Hope it clears up quickly…stay safe…Phil

http://www.myeloma.org.uk/patient-services/discussion-board/general/its-not-the-cough-etc-etc/re-its-not-the-cough-etc-etc6/re-its-not-the-cough-etc-etc1/re-its-not-the-cough-etc-etc/re-its-not-the-cough-etc-etc/re-its-not-the-cough-etc-etc1/re-its-not-the-cough-etc-etc/re-its-not-the-cough-etc-etc/

[adamsp41Participant]

Hello Christine ..welcome to the mm discussion forum…a lot of common sense is spoke on here and always in laymans terms…invaluable to the ordinary person ..Good luck with your SCT and the following remission…any questions or concerns just ask …someone will pop up…stay safe…Phil

[adamsp41Participant]

Hi Peter…I have been on holiday so not able to post any replies but here goes:I had Asymptomatic Myeloma diagnosed in Jun 2009 and I too suffered from Acute Kidney Failure in Jul 2010 and lost 90% of my kidney function due to mm……and was put on the CRD pathway (Cyclophosamine..Revlimid and Dexmethasone) for 5 months (Jul – Nov 2010)…I then had a SCT in Jan 2011… and am now in Stringent Complete Remission…my kidneys now function at 46-49% ( my kidney consultant is so pleased she has discharged me from her care )I attend clinic on a monthly basis as I am on the Myeloma x1 trial…There is a lot of helpful and common sense advice given on here…so my 2penneth is…take it all slowly ( if you can )…don't look too far down the line…write ALL your questions down before attending clinic…I too attend Leeds and can only say that the care and support there is 1st class. ..if you have ANY worries you can contact them 24/7( have you been given the contact No's of all concerned)…with regard to fluid intake I was advised anything is ok…there are lots of bumpy rides ahead but stay positive and as Vicki and Colin say it is doable…if you wish to chat at all email me and we can swap Tel No's or even meet for a coffee…there is a Leeds Myeloma Support Group led by Rita Rumsey 01132520097 …best of luck and "kick it between the legs"…Phil

[adamsp41Participant]

Hi Tom…keep taking the hurdles that SCT throws at you and shortly you will soon be crossing the finish line….unfortunately SCT is not a 5 furlong sprint …but more of a 4 mile slog…keep up the good work and "kick it between the legs"…Phil

[adamsp41Participant]

Hi Dai…after a setback now good progress is being made ..well done and as always "kick it between the legs":-) stay safe…Phil

[adamsp41Participant]

Hi Vicki…I am 30 months post SCT and still have bouts of fatigue and when I have queried it with the consultants it seems to be "part and parcel" of the treatment….I have stopped mentioning it at my clinic appt…some days I can do a short walk other days I struggle to get to top of the stairs…what I tend to do (stupidly) is think i am ok and take on too much at once (basic domestic chores)…and have to suffer the consequences later 🙁 wife says I sometimes think I am some sort of superman and repeatedly rollocks me…haha…stay safe…Phil

[adamsp41Participant]

Hi Dawn…maybe a little late but we are going on a 2 week break to Madeira and I used Insure and Go…£68 for a family of 3 with all my conditions declared…mm…impaired kidney function…high blood pressure…seemed a reasonable price for us…just to say when I spoke to the insurers they stated that policies are cheaper in Portugal than Spain as they have (in their opinion ) a better standard of medical care…stay safe…Phil

[adamsp41Participant]

Hi Tom…well done on your successful harvest…nothing seems to go straight forward with this damn disease 🙁 …keep up the good work and just to say that during my SCT in Jan 2010 I had severe mucositis and found the ONLY thing that work for my mouth was flat warm coca-cola (decoked my mouth and throat so to speak haha)…if it works good if not plod on with all the various mouthwashes (hoping you have no post SCT problems)….stay safe…Phil

[adamsp41Participant]

Well done Tom…excellent news…keep it up…Phil

[adamsp41Participant]

Hi Tom…good luck with the whole procedure….I had to have 3 visits to get the little blighters out….suffered with terrible back ache due to the GCSF…hope your more successful and best wishes for the future…Phil

[adamsp41Participant]

Dear Sue…such a very sad time and hope the support of your family is as good as the support Keith gave his fellow mm er's…our thoughts are with you Phil and Jan x

[adamsp41Participant]

Hi Vicki and Colin…I had SCT in Jan 2011 and was selected for the maintenance programme (myeloma X1)…I have been taking Revlimid for just over 2 years…in decreasing amounts starting at 25mg and now have ended up on 5mg on a 21/28 day cycle…like everything with this s..t disease there are no parameters to be guidelined by….you go on the trial and take the drug ( Revlimid in my case )and my blood readings get splattered to oblivion…so do I come off and hope my bloods recover …or…as my consultants say will or does the Revlimid give you an extension to the remission…it's like trying to grab hold of fog..the consultants still seem to be in the dark somewhat as to the effectiveness of this drug…but that is the point of the trial and that was my reasoning for agreeing to take part…I too like Colin am sick and tired of taking drugs and all the crap that comes with it… wish you well in your future decision making …it really is a tough choice…stay safe…Phil

[adamsp41Participant]

Hi Jacqui and Geoff….good luck with Geoff's SCT…stay positive and take it one step at a time…stay safe …Phil

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