hi Cathy
Have you found some peace of mind with the knowledge you have gained????
It is hard Cathy,and upsetting to watch some one you care about going through this,but at the end of the day,is there much choice,you just have to not look to far ahead and think we will get through this,you keep asking questions.
I know there are people on here who are on dialysis,after SCT one person travels,another person has a machine at home,never give up, things are do able.Ivans kidneys may generate enough not to need it,The big thing is finding what infection he has,then they can try to control it.This should be your first concern,My advice is once you have a name for it,look it up,then you will know what Ivan is dealing with,no one should get serious infections,most SCT patients infections come from within there body,will be interesting to know were it,s come from!!!!!.Isolation should mean no infections,go in to that room.!!!hope this is informative.Eve
Hi Andy
It is madding when you travel a long way,only to find it is a waste of time, lets hope it improves.
Andy since there is a chance Slim might go on maintenance for Zamiza,i started to read up on it with the Myeloma Beacon some interesting trials,one being Velcade and Zamiza,might be worth looking at as Zamiza is a prohibiter, that breaks up protein in the cells.!!!!! worth a look and a few questions.Love Eve
Hi Gill
So So sorry that Stephen has died,I know how hard it is to let go,to stop that clock and wish for time to go backward,but it does not Gill,this is the time for your tears,I hope your daughter and Stephens can not only help you practically but are with you,to give you some comfort.
It must have been awful for you,to Stephen this way,I think for your own survival you have to prepare yourself,you just thought you would have more time.Gill you will survive this,and forget the bad things,and be able to talk to friends about the good side,we would all like to think are loved ones will be free of pain,and just slip away,but this does not always happen ,and I thank god we have hospice,and dedicated nursers,they took his pain away,he is no longer suffering.
May you find some peace in the thought he is no more pain.Love Eve
Hi Helen and Ali
Have found out some info on the Myeloma beacon,but not for maintenance,so asked at the hospital today,
Seems gathering up the people to sign for trials,once they have enough they will be randomised ,its new to trials,it breaks down protein in the cells,side effects and more information at a later date.
So we wait and see.Love Eve
Hi David
You must be over the moon with the news,it should give you some peace of mind to know there is no hidden pockets of Myeloma lurking in your skeleton,
So I hope that coffin is locked away for lots of years,i had a feeling you might be rushing to finish it,LOL.David did you know you can get lovely pictures embossed on them now,you can make it so personal,and as you now have many years in front of you,you grand children might have to do lots of paint jobs on it. Love Eve
Hi Cathy
Did Ivan have an problems with Kidneys before SCT???How much chemo did they give him,they try to get it in and out of the body very fast with lots of fluids before during and after to minimize damage to the kidneys.
It does sound if he is one of the people,that some times have kidney problems,with the treatment,and it looks if this is creating extra problems.
You need to speak to a doctor,nurses can only tell you so much,write some questions down ask to see a doctor and find out why this has happened,Slim was given a half dose chemo,enough to do the job,because he had previous damage to kidneys and lungs.
If I was you,I would need to start finding out,a few facts even if it was just to put my mind at rest,did they tell you about all the risk.Eve
Hi Chris
Just coming on to wish you good luck,hope they manage a good harvest,so they have lots to put back in.
To answer you question Ali Slim is a good 3 months post SCT,his hair showed no signs of coming back until 3 weeks ago,it,s come back very dark and is a bit like a babies first born hair very soft.Eve
Hi Everyone,
This is what I have never understood,people come on here desperate for some knowledge,then b—er me,they do not even bother to reply,is it that they have only concern for them!!!!!! or are they some sick person who gets a kick from knowing these people are fighting for there lives.
Its a sad day when people need to troll this site,it does make you think,about how they have no life of the own,should feel sorry for them:-P
Hi Keith
Thanks for that info:-)
I cannot get any protein in Slim,gone off all meats fish,only thing is eggs,so egg and bacon,ham egg and chips lives off them given up trying good food,My weight has gone up because I cannot keep eating different food,if I eat Slim eats.:'-(
At the moment very p—-d off,thought the cruise might help,he gets a fixed idea in his mind and he will not budge,will not try supplements,they have a shot which is 100 cal,just a mouthful would not even try that.
Slim has used cushions for a very long time,his bones ache ,I try telling him that he must eat protein,to put it bluntly its like looking at death warmed up,but they tell me he is alright!!!!!!!!
Am I happy,??? no load of rubbish he has not put on any weight since leaving the hospital on the 2 of June 3 months If things do not start picking up,i am going to find a door stop to park on.
How come other people balloon with Dex !!!! just worried should be improving by the day,starting to waffle.
Hope thing work out for you.Love Eve
Hi Keith
You have been through the wars,while Slim and I have been enjoying ourselves,correct that I enjoyed myself.
I am interested why some people like you and Slim loose so much weight with the Dex but other people put on weight,has anybody come up with a good answer.Slim now weighs 63 k,skin and bones no bum left,try as much as I can but cannot get any weight on him,and because of no muscle left,he cannot even open a fizzy drink.
Its hard to watch,Slim is in remission,but cannot get him back to any form of health,confused,bones ache,legs hurt and taste buds none gone.So tired slept most of the time on the cruise,sleeping more now than the earlier days.they just tell me he needs building up:-S
If you get any explanation why Dex effects peoples weight differently I would like to know.Love Eve
Dai
That was lovely,I find a great inner peace in poems,not very good at lyrics,but do enjoy reading them.Love Eve
Hi Les
Nice to hear from you and you have come to the right place,this lot on here will soon cheer you up.
My advice is take one day at a time,what seems awful at this moment,will not seem so bad in the future,but you are going to feel worse before you feel better.
First have you applied for a blue badge,or any money like attendance allowance,or independent living allowance or carers allowance,please get in touch with the MacMillan nurses who will help you get the money that is yours by right.You will need this help in the future,so best have it in place ready.So you do not have to worry about money.
My husband is the one with MM.diagnosed January 2011,he was one of the unlucky ones,that had to have CDT plus Velcade before they got it under control.20 months later after SCT.he has full remission.:-)Lots of people do not have the same problems,It is different for every one,so take one day at a time.
Plan some thing every day even if its just going for a short walk,give you self goals to reach,every thing is do able,you will get there in the end.
End of August we 9 days in our Motor Home,in France came back and went on a Cruise to Norway,it is doable.
Your Kidneys might regenerate,my husband was admitted with AKF his kidneys improved,so was able to have SCT.He had a few blips on the way,lost 4 stone plus 5 inches in height,eat a little and often,I found it easy to keep little pots of custard in fridge so quick puddings could be made.Try food in small quantities as you taste buds change.
I am sure you will get lots of replies with lots of good advice.Eve
Gill
There never will be enough time,life and death goes on,but when you are in your situation,you just want the world to stop you will cope with Stephens death,Be brave save those tears for after.
I thought you might like this.
If there is a tomorrow when we are not together
There is something you must always remember
You are braver than you believe
Stronger than you seem
and smarter than you think
But the most important thing is
even if we,re apart,
I will always love you
my daughter,finds it a great comfort,as well as me.Love Eve
Hi Jacqui
I would like to make a comment about sugar in general concerning MM.
I know Slim has never taken sweeteners but enjoys white sugar in his tea,which I consider is bad.
During his treatment he developed a taste for puddings after dinner,normally he would not dream of eating anything sweet,he would drink wine with all its sugar.Now he cannot drink wine at all,but will eat cakes and puddings.
I read some were that sugar feeds cancer,I do not know if its true,but I think the chemo treatment does change a persons eating habits.
As I am desperate to put weight on Slim,my attitude is he can eat what he wants I do not seem to be able to get him past 63k.Eve
Hi,
My name is Eve I am a carer.Welcome to the site.
You ask questions,and expect answers with very little information for anyone to give an answer.
From what you are saying the person concerned had severe bone damage which in it,s self brings it,s own problems,as you have an aunt who had Myeloma and is still alive,she should be your first port of call.
I would not advice any person to try to cope with this on there own,
It depend were you live,how good the treatment is,plus the support you have,this is a terminal illness ,age health and mentality play a big part.
I hope this is some help.Eve
