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 horizontal but a positive one so can tell if getting a little spikey and smile to my wife Rachel and say "think its the Dex"
Glad you had a good response to treatment on RCD.I am a little nervous of the stem cell transplant seems a big thing.Seems like I will go into St James Hospital Leeds (Jimmy's) and be in their for a month, did that happen to you? and whats is the recovery time at home roughly? its a new world out their.
hope to catch up with you soon
cheers Paul:-)
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 October if current meds are working or not.
I have contacted my nurse a few times with some questions a felt better for doing so..i did some painting ..well i painted all the down stairs windows and doors(outside) in 1 day then next 3 days aching..lesson learned! Just come back from Paris which was great,used a ruck sack(40kg weight) to take clothes and stuff for me & wife ended up aching after that…lesson learned time to buy a suit case.:-) paracetamol took the aches away.I agree any prolonged aches /pains to check out with the nurse.
How are you doing with meds plan,i did notice on the posts that you had some decisions to make .
take care and speak soon
Paulx
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 stop as well.
Just come back from Paris after visiting family and we walked quite abit maybe 3 or 4 miles a day.(but fortunately this was on my "week off meds")so that helped!
I do agree that there are days when feeling "leggy" does slow me down and i think "what am i doing sitting down again?" I asked my consultant about that and she says the steroids (Dex) can be responsible for that.When I come off Dex it slowly wears off just leaving me with a lack off instant energy I.E have no sudden umpph! so have to cross the road with care.Going up and down stairs is definitively exercise! so keep it if you can as it will help to keep fitness up ready for the next step (no pun intended!:-D) .I hope to start swimming this week(1 or 2 sessions a week) as its a weight bearing exercise..nothing to strenuous thoe. Gill at what stage did you return to work? I have been off work since August 16th.
Take care
Paul
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 advice and I have made a mental note of that as has my wife.
take care and speak soon
Paul
Hello Dai
Just read Bilbo's song….wow made me cry straight away,such a descriptive song and so lovely.Thanks for sharing that.
cheers Paul
Hello Dai
Many thanks for the reply,since the posting I found out it was Bence jones and looked on the sites info leaflets which helped alot.
3-4 of my ribs have been weakened as have 1 vertebrae and the consultant put me down as in the "early stage" .So having Bisphosphate infusions once a month when visiting consultant.
I was diagnosed on 16th August this year after returning from our holiday in Scotland,"whisked" into Huddersfield Royal Infirmary for 9 days with a visit to St James in Leeds for radiotherapy on a tumor they spotted near my spinal cord which caused concern.That has been "zapped" and pain has definitely nearly gone so fingers crossed something there has worked..we will see.
My consultant straight away spoke to me about the Myeloma 11 trial and explained about the process.E.I the pathways.Now Dai being new to this new world i apologies for my layman's terms and maybe some vagueness!.
I am on the RCD pathway (Revlamid,Cyclophosphamide,Dextramethasone).I have just completed my first cycle today and will see the consultant and start on cycle 2 later today.
Side effects on my first cycle seem to have been, feeling abit "leggy" in other words abit heavy like you have over exercised the day before.But this has worn off more and my exercise has increased.Dex makes me initially energetic then when I come off them it seemed to make me tired on 1 day after stopping,this then went.
I take Revlamid at night between 9-10pm which has a sedation effect.If taking Dex I take at either 6-7am so it lowers the issues around sleeping at night.Which so far has worked,thoe when i was in hospital found sleeping so so hard but this could of been the noise,different bed etc and lots of thoughts!No issues with feeling sick and as usual will eat like a horse!Thoe just thinking about it after taking Cyclophosphamide I got a sore throat for 3 days..I will mention that today.The plan seems to be as you say about cycle 6 I maybe ready for harvest and first SCT. There seems to be lots of "coin flipping" by the computer to decide on which pathway you follow.But either way you receive the current NHS treatment for the condition.I think i am right in saying this but they say the Revlamid is good in later treatment so now looking to introduce Revlamid early in treatment as well to see how it goes.As I say I am still new to this so hope the above helps..please ask as many questions as you want i am always happy to help out.I am a pretty positive person in general but talking to work colleges and friends is i think the hardest thing at the initial stage when people find out.But everyone is being really supportive to me and my wife Rachel.Just come back from visiting family in Paris which was lovely,we used MIA insurance which I would highly recommend! take care Dai and speak soon.
cheers Paul:-)
Hello Bridget
Just logged on and seen your post,good luck with the Radiotherapy.I got zapped when first diagnosed 4 week ago and was in some fair pain.No pain now just muscular aches.
You are a strong woman i think, so i am keeping my fingers and toes crossed for you.:-)
love Outdoors Paul
Hi Ellen
I have just been diagnosed with Lightchains Myeloma and I am 50% through my first cycle on Myeloma 11 trial RCD pathway.Is there any info out there on Lightchains,my consultant says its in the "early stage" I am 39 and male quite physically fit..except for the Myeloma!
thanks Paul
Thanks Gill for the posting,its early days but fingers and toes crossed!!:-D
Hi Mavis
Thank you for the lovely welcome to the site I attended my first consultants apt today and found out that I am a Lightchains Myeloma person…
So my consultant has told me that i dont produce para proteins its a different form.So sorry cant help on that one,completely agree about reading up on things and this web site is great and all I have corresponded with have been really helpful.Keep in touch Mavis
cheers Paul:-)
Hi Debs
Many thanks for the advice,just been to have my first consultant check since being discharged 13 days ago.I have Lychains Myeloma so now have a name to it!(As I am a walker I have Named It "Beinn Myeloma" my next mountain to climb!)
I am half way through my first cycle and finished taking a 4 day dose of Dexy.Side effects have not been to bad to honest and I feel better in myself about 2 weeks into it.The good advice is to listen to my body which i am doing and keeping active.Red wine still OK thoe I think I might try different varieties just in case only small glasses thoe!
Debs I have joined the under 50s site so hopefully catch you there to but i will still be using this main site to.
cheers Paul:-)
Thank you Stewart much appreciated.
Bridget thanks for the Revo advice you seem to have a wealth of good advice. and I think I will take the revo later in the evening.Today is my first day of the 4 days of high dose Dexy so I will be assessing myself as it goes.Went for blood test and away for 9.30 thoe it did involve 22 mile journey.Will try to see if consultant will allow bloods to be taken at my local health center as we are 12miles from local Hospital.Enjoyed walk on canal in sunshine and friends over this weekend..so some nice food and lager…non alcoholic! thoe i will have a small glass of wine.Monday is first consultants apt since being discharged so we shall see..
enjoy the weather
cheers Paul:-)
Hi All
Thanks for all the support and advice which i will take i promise!
Been on the RCD medication pathway for 11 days now so meds must be well into the system.I do have a slight sore throat and sometimes get a hot sweat usually after Revlamid in the evening. I was told to take Revlamid at "teatime" so duty fully taking at 5pm..could i take it later say 7pm which is my natural evening mealtime?
My legs felt a little heavy early on but seem to be improving with more use I am walking durring the day on the canal about 2miles.As still on sick leave from work its part of the daily exercise if I dont feel to tired.Seemed to have developed a shaving rash under my chin area which never happened before..could be side effect or cos of the radiotherapy maybe any ideas anyone?
I keep asking my wife who is opposite my now trying to read her book various things…better stop I know when to quit!
Oh yeah first blood test tomorrow at the hospital not looking forward but needs must.
cheers Paul
Positive thoughts to you both & keeping shouting loud.
Paul
Hi Russel
I was diagnosed about 11 days ago now and I am 39 so we not that far off in age i think.Theirs a shed load to take in for sure but this is definitely a site to find good sold support and some possibles answers to questions you have.Its still all new to me plates spinning here and there,medication,hospital apps,work,social life….Today was my first day out on my own..wow what a release!! but it still felt a little weird but good.Some of the simple things i took for granted like going out for a walk have becoming abit like a "check" step meaning mm-mm yes I can still do that,and yes i can still drive suppose with i am saying is building back the confidence again.I live on the Yorks /lancs border so not for from you and Andy.
Cheers Paul, and as Andy says if you fancy a pint I am there to
Paul
