Hi Peter
Well Leeds is good,there must be a Myeloma group,in such a big area. I know all this has hit you like a sledge hammer,but we have all been there so,you have come to the right place.
If I was you I would go into back publications,or the library on this site also look at the video s lots and lots of information there,it takes time to get your head round the medical jargon,but you will!!!
It sounds if you will be either having your first talk with myeloma team and signing papers as all these drugs are controlled drug.until you know what drug you are on,just try to learn as much as possible.
My husband was admitted with AKF so you are not alone,although only 4000 cases are diagnosed a year?,there are different types of myeloma but all treated the same,Slim has AgG bence jones myeloma..
Ask for results of bloods or get a diary from Myeloma UK,Ellen or Maggi can help you there,it helps to know your blood results,as it is an indication of your general health,and you can do little things about it to help yourself.
Any way I am sure people on here will be coming along and giving you a welcome and some sound advice,.Eve
Hi Peter
Well the dex is definitely keeping you awake:-) .welcome to this site or roller coaster as a lot of us call it.
I take it Friday was the first time you saw consultant,and he wants you to start treatment as soon as possible????.The dex is to give your body a boost before heavy drugs???.
Treatment differs in different places,it's my husband who has Myeloma,when he first saw the consultant he was admitted right away,but he was very ill,this was on a Friday,test done over weekend,discharged Monday,Thursday signed papers, blood test,started treatment on the next Friday.We live in SE Kent.it was a bit of a whirlwind,but that was 2 1/2 years ago!!!:-S
If you do not have an paper information on Myeloma please ring the help line on here Ellen or Maggi can send you some and help you.!!!
Take it one day at a time,try not to rush into anything without information,you are in for a long ride and when this happens,you just want to get on with it!,but it's worth stopping and considering your options,for example,are you in travelling distance of a bigger hospital that may have better trials!!!
Just a thought to be going on with.Eve
Hi Tom
Cheer,s to you both,it,s all good news for you and your family, sending you both all my love,and wishing you many many care free years. Eve
Hi Garry
Eva has just posted about Sue,I know you are far away,but just to let you know,we are thinking about her and your family,its a lonely road in times like these,.Best wishers Eve
Hi Eva
Next time you talk to Sue,s family,please pass on our best wishers,it,s a lonely road to tread,and I would like to think her family know we are thinking about her in this awful time.
How are you doing Eva????
This very hot weather is causing more problem,s mainly fatigue,Slim had a clot in his artery so only walks a few yards then wheelchair,but he is at least getting out for a break
Wishing everyone the best Eve
Hi Rebecca
One I think its how you intend to get to EU,and 2 what country you are going to as they all have different rules.
EG. France will pay for 79 percent of your health care,if you are under pension age ,they like money up front,21 percent canbe a lot to pay out for,if you need doctor,they have a basic emergence charge around 20 euros plus you pay for prescriptions,usually around 30 euros.
Spain you can get stuff at chemist no problem and cheap.Portugul you can go to any clinic and get treatment,you pay for prescriptions. Italy I do not know about.
I have travelled for years with no insurance in our Motorhome,we still do it without exra insurance only card,but with Slim having Myeloma I make sure we are in a 24 hour window for me to drive home.
If you are waiting for SCT you are in remission now!!! You should be able to get insurance with a note put in your file at GP. That you are fit to travel,we did France came back on a Friday went on cruise on Sunday with insurance.
I am sure people will come up with some good company,s,better save than sorry. Eve
Hi All
Interesting,Slim was in the same position,being treated for acid reflux,taking,omepralole,for years before Myeloma,and although lots of damage to bones it was the kidney,s that he was admitted for!!!!!
May be this is one of the very early symptoms. Eve
Hi John
At least having the runs in hospital is better than home,I use to have white fitted carpets soon changed to laminated floors,Slim kept decorating carpet. A good buy is a steam cleaner,it takes half the work away,and you will get to a stage were cleanliness is paramount .
We call this a roller coaster for a reason,there are so many high,s and low,s,this disease effects everyone differently,some sail through treatment and have SCT while others just cannot get remission,the reason they put June on Velcade is it is kinder to the kidney,s,usually people start on CDT or CDR,then CDV,the only thing different is Velcade is by injection either sub cut or given through line with saline .watch out for Dextatude moments,when on high doses,they become rather (argumentative ) think they are always right!!!.be warned!!
The body will get use to the heavy drugs,you are only just beginning this journey take things slowly,there are people on here who have been living with this for many years,no one knows why some people respond well and others do not.Eve
Hi Phil
Have you not explained your condition in work???! I am sure they would want you to be comfortable,your health and comfort should come before,any office attire,if you were a pregnant woman it would be no tights no heels,and any thing that fits on your feet.;-)
Cheaper to. Cut the top of your socks off,than pay for the bus!!!
I like the Aussie and NZ attitude to hot weather,anyone wearing long trousers looks out of place even in the office,we need to mend are ways in this country. Eve
Hi Mal and Bruce
It is lovely to hear from you and to know you are doing great:-)
When any questions on kidney failure come on here I think Clucky,but you do not post often,I can understand that as life seems to have moved on,and a good life at that.
So nice that things have gone well for you.my best wishes to you both Eve
Hi John and June
June is in the best place to start her treatment,you will almost see her gaining strength on a daily basis ,my husband had his first consultation and was admitted within 5 minutes with AKF plus hypercalcma ,doctors talking about tumours,lesions ,spine compression,I walked in with all this going on:-S
All test one over a weekend confirmed Myeloma,sign here for trials and off you go,no time for learning anything,well that how it went 2 1/2 years ago,then comes the bib big learning curve,you will eventually get use to the medical jargon,and learn to ask questions and not take things on face value,then you will become an expert on your wife,s condition .:-)
Welcome John and June just remember there are a lot of people on hear who have been were you are now,and we can help you,make good use of this forum,it can give you a lot of advice and support. Ellen or Maggi are on a free phone number,if you want any advice. One thing people do not mention much is how to tell and cope with family, I found it hard to keep repeating myself,because you are going to want to lock Myeloma in a cupboard,and try to be normal for a little while,you have to come to terms with you and Junes grief without other people,s feelings. Eve
Hi Young Tom
Good to hear you are home,well it is over and done with,make sure you take it easy and listen to your body,some people recover very quickly others do take much longer.lets hope it,s a walk in the park for you Tom.rest and more rest.
You might not be able to go out in this lovely sunshine for awhile,but at least you can smell the flowers.Eve
Hi Phil
Sandals might be your answer,plus if you cannot find any loose top socks cut the top off your other socks,I found socks very easy went to the cheaper shops,as M&S did not have any,factory outlet shop had them.:-)
You need to get your feet much high than your body,if sitting on a sofa the arm is about the right height ,same in bed,I use to massage Slims feet with Palmers Cocoa Butter Formula it easier s the tightness of the skin.,but you still must walk as well.
Hope this helps Eve
Hi David
I have always known that to be the case,if they cannot reduce the Myeloma by 50 percent they do not have to pay for it!!!!,I think when Slim first started on Velcade on the MX1 trials that is what we were told,if I am right it cost around £750 per either cycle or shot not sure now.
But things have moved on from there NICE now accept Velcade as a treatment so may be this no longer applies,things do change so fast concerning treatment,now you are allowed to go back on Velcade if you responded well first time. It was still considered a failed drug for Slim.
I noticed on an earlier post you are having problems with feet,may I suggest cocoa butter oil,from boots,I massaged Slims feet and legs most night with this stuff someone recommended,and it did seem to help him,do not ask me why this stuff,but it did help.
Hope this is of some help.Eve
Hi Ceri
Well from what little you say ,you are talking about less time,not more!!!!!
You have to decide for yourself were you want to be!!!,I can only tell you your step mum is in a very lonely place at the moment,she is most properly very tired and worn out,plus she is watching the man she loves,slowly ebbing away,its not a nice place to be.
Why not offer to stay,when your dad comes home,but be prepared to take some of the burden from her,it's no good going if you can not be of any help,is it not better to spend some time with you dad while he is able to communicate ????..
You will never have this time again,there is nothing worse than having regrets,I hope you make the right decision for you,if you feel you cannot do it,that's fine,it is a very hard to watch some one fade away,and I am sure your step mum will understand if you talk to her.Eve
