Hi Babs
Get that letter from the consultant and book it,it will do you the world of good,since remission,we have had a cruise,been to France and now NZ,we do not have a lot of money,but when you now your chances of living until you are 80 are not great,it,s not important.
Hi Jean
Thought I would say hello while on,we never seem to be on line together,Sorry about starting to games of scrabble on facebook,.Eve
Hi Babs
IT is a bit of a bummer,comes and knocks you side ways,all your plans for the future,flying out of the window,well i am a carer and I felt like that:-P, still do some times,it,s a big learning curve,but look around you,all ways someone worst off than you:-S
My husband had his SCT in May so a little ahead of you,and we are off to NZ next weekend!!!!!,we in tend to make the most of the time we have,an awful lot of money was spent on getting him to this position,he will never be the person he was before,and neither will I.I have to give myself a kick every now and then.
So Babs,in another couple of months,you will feel if you have turned the corner and the SCT was worthwhile,I have the tea shirt to prove it.
Welcome to the club,and start thinking about a nice holiday.Eve
Well Babs I can understand the way you feel,having treatment in Canterbury it,s not the most pleasant experience,you spend more time in the waiting room than being treated!!! guess were my husband had his treatment,and I do not suppose you every every saw the specialist nurse who is based at Margate LOL ,How many hours did you spend waiting for tablets!!!! no wonder you sound down.
Babs soon you will only have to go once every few months,so things will get better,were are you based I am in Deal.Eve
HI Keith
Well,you answered your own questions,so does that mean it was not so much of a shock or is it a combination of relieve plus your ready for the next hurdle,??? I am amazed that I could not find a lot of trials for people in your position in the uk. To put it bluntly you must feel any new trial offers some hope. I looked at cancer uk,they have a section were you can put your condition in and ask for any trials with Bendamustine in,also went on Myeloma Beacon.The general impression I got,is the drug companies are providing drugs a lot cheaper for new and first time remission patients cheap on the bases they will be taken up as basic treatments eg Velcade. People in your position are going to have to fight and go to other funding to get extra treatment to buy you time.:-(
My own thoughts on this is they should be throwing drugs at you,you know your position,are prepared to test new drugs,and they seemed to be reluctant to use this untapped market,Bridget was a good example.
I know the thought of do no harm,but it must be very frustrating when most thing have been tried and tested to no avail.
You are ready to fight the next stage and as you say you feel well in your self,so lets hope this new treatment buys you this extra time.:-)
Good luck Keith I hope all goes well and you keep this feeling of well being and determination .Love Eve
Hi Ali
Must admit I felt cheated for Slim,I had done a lot of research and 33% chance of no treatment and 66% of treatment,Slim got no treatment,to be truthful felt deprived,and I am just a carer lol.
Saying that have got my head around it,now looking forward to 6 weeks free,then 2 weeks of test and consultant,so there are some good points to no treatment.
We are off to NZ then home for test and consultant then off to France,I intend to cram everything I can into what ever time we have.Eve
Tom I have to say it,you are as bad as Slim,
Slim was being sick and I went out to the desk and spoke to the doctor who said he could go home,as long as he was not sick, mhhhhhhhhhhhh.He had told her he was not being sick earlier,I told her," he tells lies",who did she believe,An ex marine who could look you in the face and lie.
I rest my case these naive young doctors do not stand a chance,Eve
Hello Stewart
Well a very bonny welcome,and congratulations on your new baby:-)
Well MM is the last thing anyone needs or wants,but saying that on here you are going to see and hear lots of people who live with it for many years,so you will learn to cope with it.
First may I say forget that diet,you will need all your body to sustain the treatment plus the SCT,so carry on drinking and eating,most people loose a couple of stone,its the carer who puts it on (well in my case)all the food my husband asked for and would not touch:-S :'-( >:-(
May I suggest you get in touch with Scotty,and she will send you an invitation to join under 50,were there are lots of people in the same boat,they think we oldies don,t swear:-P
It all takes time and a big learning curve,take one day at a time its a long hard journey,so you need to pace yourself.As to your better half,she needs to talk,get things out of her system she is worried about,if you can get her on here,and she realises its not all doom and gloom and people can help with here worries,it will help. Eve
Hi Keith
You sound very down,and who can blame you,I would agree they know the results,the meeting will be to decide the next treatment,in some ways they are trying not to leave you in a state of not knowing,but they forget,you become an expert on yourself.My advice is look on here at all the trials taking place in you area or not,and go armed with as much information as you can,see if there is something there for you.
Find a hurdle to jump over Love Eve
Hi Chris
Sounds if things are going well,they have taken your tube out,well well they must think you will not need any extra,s to help you improve like platelets.So that must be good,when you start feeling better you tend to want it to constant,well everybody is going to tell you it will take time,its something you cannot rush,if you stop and think about it,it,s like major surgery only it,s with the bloods,thats why it takes 6 months to recover.:-P
The hard work starts when you get home,you become aware the experts are at the hospital,and you have to rely once again on how you feel,so do not worry about nuets,they will throw you out as soon as they can.Eve
Hi Carol
I am so sorry Carol,cannot help with PAD,Andy is the one to help you as he had PAD but it did not work for him:-(
Your right,you do not have to put on a brave face here,we do understand,although Slims in remission,the brain says when do we have to start going through this again,never said at home but the thought is there,then I give myself a kick up the backside and get on with things and think,when it happens we will deal with it.So be strong.:-)
Good Luck for today,keep in mind they have caught it early,and they are going to hit it hard.sending you my best wishers for today and Monday.Love Eve
HI Eric
Hello and welcome.You must be wondering why you have not had any reply,s???
Well if i may explain,because you went into an old thread,although it shows a posting it has come on screen in the middle of an old posting.The best thing to do is ,log in go to the first section,which you did,then scroll down to start discussion ,then you can put you own information with heading,and people will see it and realise its a new posting." hope this helps"
Your question "do I stay on the trials" after remission,well Eric
I can only tell you about my husband on the trials.,he got CDT on trial,then went on Velcade then remission,then SCT.last part of trials was maintenance,he got randomised for No maintenance,but they still want to keep a close eye on his bloods,so he goes to hospital every 2 months.
My advice is stay on trials,if treatment does not suit you,then come off trials,that way you leave your choices open.Eve
Hi Sue
May be the answers lie in what you did not hear!!!!!
When Slim was being taken to ITU a doctor in front of me said to him,you are being taken to ITU "I cannot promise you,you won,t die",he did nor ask and he cannot remember:-P.
Sue you need to speak to someone may be a consultant or your own doctor,you need to ask for a second opinion.No one can give you a time,because unless he is near death ,organs failing no one knows.I am sure if you wanted to speak to a consultant,they will either see you or speak over the phone to you,
Please get in touch with someone,they understand that,some things are hard to accept,I have been told they have to repeat 3 times,the bad news.so that it is understood,and to give a time is un heard of.Eve
Hi Phil
This disease has no normality,so one persons story,has no baring on your,s,my husbands neuts and platelets took a long time to become stable.The thing they look for is,although the neuts dip,they look for a little gain each time,my husbands went down to o.3 when he was taken back in,he is now 6 months on and plates are 84 should be between 150 to 400. neuts are 3.4 should be between 2 to 2.75.So everyone is different
You do have to look at your other numbers concerning you bloods,before you,start thinking the disease, is back,but I can understand your fears, I think everyone expects a quicker recovery.I use to think the same way,all unfounded,once you have the BMB,you will know.
Six months down the line and I can say,it has taken this long to even feel,we have been given extra time,it has been lovely to see doctor,s smiling and saying how pleased they are with Slims progress,but it has taken nearly 2 years,with hiccups along the way.Eve
Hi Sue
If it is any help Sue,Slim had panic attacks when in ITU,and of course I was not there,and I was there 20hrs out of 24.made me feel awful,but he did say to me they were bad dreams,and we did talk about them after he came home.
So glad to hear he is coming home,make time just for you and Michael,you will need all your strength in the coming months,my best wishers Eve
Hi Emma
Glad to hear your mum is feeling better,there is so much to learn when starting treatment,so it is a big learning curve.:-)
When your mum starts treatment everything will be explained,about tablets when to take them and the best times,there are a lot of tablets so go out and buy a pill box,and make a chart makes life easier.
Kidneys recover,but they will keep watch on them,those big bottles will have to be filled every month,they can get heavy,so make sure mums not carrying them,PP and Kappa light chains bloods tell them how effective is the treatment,you can get copies or sometimes they give you a book that can be filled in each cycle so you can see progress.
It is going to be very hard,with all the tablets,mood swings,plus not feeling great,but it is do able,your mum will need your support,if there is a support group or a Myeloma Day in your area it is worth going ,it will boost your mum,and she will realise there are lots of people in the same situation,plus lots of carers as well.Eve
Sorry Debbie
Must have had one of my moments Dad became Mum:-/ :-S 😛 Eve
