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.
take care all8-)
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 needing rest.
take care Paul
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 always tell Rachel my wife when i get e-mails.
You and Slim take care
*****[b]Helen[/b] nice to here a good news story from Jimmy's especially a match making one!
cheers Paul
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 that month.My wife is best placed to say about my Dexatude! but to be honest I am quite laid back and can tell when a Dex moment is sneaking up! and just try to smile and try to say is a Dex thing. Wife/partners are very understanding.The only other side effect on Dex is the hiccups which "do my head in!" it starts on the 2nd day(but stops when not taking) and tends to trigger when I bend over to pick things up or talk to much and dont take breath!.There are the usual old wife's tales of getting rid.What helps me is drinking a large volume of water holding breath till it goes,But this is a trial and error thing,Peppermint tea my also help.I have put some upper body weight on due to the steroid and you may develop a "fatty lump" to base of neck/shoulders again due to steroid and my consultant says it will go when I stop taking it.Oh Yeh after stopping Dex the next 1 or 2 days you may feel tired but again its an individual thing I usually have to rest abit.
Cyclophosphamide-No obvious side effects on my 50mg dose taken 1st day of cycle then 8th day of cycle,but i do take my anti sickness tablet before just to make sure.
Revlimid (Lenalidomide)I take this at between 9pm-10pm which works for me as its got a slight sedative effect and seems to just slightly contouract the Dex which can keep some people awake at some stages of the night.
The only other thing is that I can sometimes feel like I have "heavy legs" in a morning (like you have exercised to much type of thing)but once you start walking about etc it fades away. To be honest I can not complain at all really as my consultant has just told me I am in partial remission for the first time and she expects full remission in December when I see her again.I am now being lined up for SCT in St James Leeds (Jimmy's) in Jan/Feb so fingers crossed for that one! When diagnosed in August with MM (Lightchains) my levels were in the 1000s! now down to 3.4.Thats my current experience on RCD so hope it helps along with everyone's.
cheers Paul
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 told I am in partial remission and hopefully complete remission in December my consultant says.My levels are at 3.5 and have been recommended for SCT Jan/Feb 2011.I agree its a daunting thing which is approaching…..but I always think its best to tackle your fears otherwise they grow and i reckon being positive as you clearly are will help.I am just about to turn 40 in December and am generally positive and try to be active outdoors Hill walking and cycling when I can.Keep it up Dave and you are always welcome to e-mail me.
cheers Paul
😀 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 about your remission in 2010/2011 Xmas times.
cheers Paul
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 it easy and felt tired.I am now on my 4th cycle on RCD pathway,over time you will begin to notice a pattern with the medication and a just things accordingly.Like you my wife and I keen walkers in the mountains and enjoy cycling, its about balance I think.I would agree with Dai and say do a post on newcomers section because there are lots of great people on this site with a host of experience who can offer advice and recall from experience,and yes dont worry there are other younger folk with Myeloma as well. always happy to chat.
Paul
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 benefits of the Myeloma 11 trial and informed me about the "randomization process".I am on RCD pathway (Revlamid,Cyclophosphamide,Dexamethasone) and now on my 3rd cycle of meds.My experience over this short period is that I have received excellent care and support from all medical staff with very good access to my specialist nurse for any questions I might have while at home.While taking the meds I have found it useful to keep a short diary on if/how they effect you so you can look back and check.It always seems harder to manage other peoples reactions when they hear or you tell them.Just listen to your body, be active when you can and rest when you have to.You have definitely arrived at the right site for good support and advice from everyone who uses the site.keep in touch and always happy to chat.
Outdoors Paul:-)
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 does not always mean 3-4 weeks in Hospital….
take care jet and i will visit your blog
Paul
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 pain currently.Have lesions to left side of ribs.Now on Myeloma 11 trial and RCD pathway and Bisphosphate in injections once a month.Movement is good and continue to duo some daily exercise to maintain muscle definition in legs.Sounds like you are a positive person which as I am which Is half the battle.Sorry cant help with some of your questions but welcome to the site and everyone is very very helpful and you will get some good support.
always happy to help where i can
cheers Outdoors Paul
Positive stuff!!
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 it..feels like you have over exercised the day before sort of felling.I have found some daily exercise beneficial to get the legs going and keep up muscle definition.I think most people on this site will say that just listen to you what your body is telling you,if tired have a rest..if feeling energetic go for it!! just dont over do it.
Its taken me at least a month to "get my head" around having Myeloma and learning to live with it but getting there now.I am quite an active outdoor person so believe that we have to be positive and NOT let Myeloma define who we are,but to be who we are and carry on with life.I know it will feel like there is so much info about and so much to take in.But this site is the place to get correct information from professionals and receive really really good support from other members I know i have and do.My steroids can make me a little "spikey" on occasions so if not experienced it yet just to be aware and tell the loved one.I just smile now at my wife and say "think its the steroids and give her a kiss!"Steroids can interrupt my sleep a little but not much,I take them about 7am at breakfast so they are in the system early and wearing off a little at bedtime.Side effect of one of my night meds is drowsiness so that is counteracted luckily.
My dizziness and drowsiness is wearing off slowly now,but all side effects are individual to the person.It does get better!! and slowly you take in more information and start to feel in control of life again.
Your contact nurses are their to help dont feel that you cant speak to them if you have any worries.
I hope some of my new experiences have helped its all still new to me and it is for sure a learning curve.
Always happy to help where I can.
take care
Paul
P.S You and your Hubby go spoil yourself!! have a treat.:-)
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
