Hello
I Like the idea of this developing thread of where we all are.My name is Paul(outdoors Paul) and i turn 40 in December(so propping up the younger end).I live on the Yorkshire/Lancashire Border and am receiving treatment in Halifax and St James Hospital Leeds (SCT).Currently on the RCD pathway and being lined up for SCT in Feb.…[Read more]

Hi Dai
Sounds like you done lots of walking and gained those trophy blisters en route!so i think you are now aloud to"look the part" you have earned it i think.And yes a pint a pub at the end of a walk is spot on no matter how long it is especially if folk music or a ceilidh band is on. cheers paul:-)

Hi Eve
Motorholme sounds good idea!!and will also keep that in mind should a "gremlin appear" durring SCT. Slim sounds like he was a fit lad and I am sure this helps him at times.I am in a local mountain rescue team but just had to tone things down while going through treatment.I would agree its not that easy to be confined to quarters when…[Read more]

Hi Eve
How did you guess? yes I am thinking about a long distance walk maybe West Highland way about 95 miles next summer(can do that in 2 weeks things permitting). We did wainwrights Coast to Coast 2 years ago fantastic scenery and a really good social holiday with other walkers.
Thanks for the e-mail support always appreciated and I…[Read more]

Hi Gill & Stephen
I am on Myeloma 11 trial and RCD pathway at the moment I have just started my 4th cycle.My side effects have been very slight really I will try to list below.
Dexamethasone(Steroid)-Best start with Dexamethasone,I start my cycle on it for 4 days then have 7 days break and another 4 days back on again then that's it for…[Read more]

Hi Dave
You have got the determination needed!and sounds like you have really dug deep with getting mobile again well done.I was diagnosed with MM in August and spinal compression and again lucky to be walking. Dr and Nursing team got me in Hospital and treatment began.Just starting 4th cycle on RCD pathway Myeloma 11 trial and just been…[Read more]

😀 Hello Dr Dai
I will follow your prescription to the letter for Xmas/new years 2011!,we have booked a cottage in highland Perthshire for new years and seemed to have dropped lucky as my consultant says she is happy for me to come off meds on December 12th.So we have the opportunity for a little shin dig over festive season.Glad to here…[Read more]

Hi Eve
Great news for you and Slim so good to hear some positives8-)
cheers Paul

Hi Penny
Sorry to hear about the diagnosis but from your post you sound up for getting your running shoes back on again! being positive is the thing to be.But you must listen to your body and when it says "rest" or "slow down" then you should.I did a 12 mile cycle ride around Derwent reservoir yesterday and really enjoyed it but today took…[Read more]

Hi Jim
I was diagnosed with Myeloma in August this year and I will turn 40 in December.Like you it came as a hell of a shock as i eat healthy and physically active to.I live on the Yorks/lancs border and receive treatment in Halifax and will have SCT at St James Leeds.My consultant acted very quickly with my diagnosis and spoke about the…[Read more]

Hi Jet
Dr Feyler s name is Silvia and she is a consultant Hematologist and you are right, she is German and she is an excellent consultant, very caring with a very good insight into procedures.I see Dr fayler in Halifax but she also works in Huddersfield and I guess Leeds to.Sorry about late post just been busy recently.Glad to hear that SCT…[Read more]

Hi Terry
Well you are a seasoned professional compared to me as I have only just been diagnosed din August! with MM.I to have tumor upper back/lower neck which caused spinal compression.Taken straight in to Hospital with concerns about losing mobility and bed rest.Had radiotherapy and tumor area which seems to have removed most of the…[Read more]

Hi
I am on my second cycle now(I was diagnosed in August with MM at 39 years old) but on the RCD pathway and also take the zometa(Bisphosphate) injection once a month when visiting my consultant.I dont seem to get the same side effect as you on that..but do feel lethargic and tired on occasions.My legs can feel a little "leggy"as I call…[Read more]

Carol/David
[b]Vasbyte[/b] yes I like the word it has feeling of determination about it!I to will use that word when abit of extra umph is needed.:-D

Hi Helen
I to am a glass half full rather half empty person so positive stuff and we shall keep going.Thanks again for the info Helen much appreciated.Wow 3-6 months recovery time but like you say its an individualistic thing.Glad to hear that its gone well.
speak soon paul

Hi Helen
Thanks for the post I agree that my body will tell me and it does..I have taken the advice about resting and agree that works.I got a little snappy on one occasion about where the Pears soap had gone from the bath room! We laugh about it now and I can tell when a Dex moment is upon me.My personality is quite laid back if not…[Read more]

Hi Bridget
Just looked at my discharge sheet and lightchain Bence jones protein is what they are monitoring.I continue to provide both blood and urine samples for my consultant.(The 5 ltr urine container always seems intimidating!)Seen the consultant yesterday and now on cycle 2 from today(4 days of Dex to start with),I find out in…[Read more]

Hi Gill
Exercise does seem to help me, though it can be mentally challenging to get going.I.E I try to walk about 2 miles a day (currently off work) on the canal,it might take 5 mins for my legs to get going as such,But once moving things feel better.I have quite good muscle depth in my legs so i know my legs can do it..but i know when to…[Read more]

Hi Eve
Went to see the consultant yesterday (only 2nd apt)She seems happy with me at this stage.My October apt will tell me how I am reacting to the medication.Thanks for the "heads up" on the Dex which can mask infections/low blood pressure,i did ask my consultant that question and she did indeed say yes it does…So "thank you" for the…[Read more]