Hi S
Light chain deposition disease???
I must say it’s a new one for me,so I can understand why you feel so isolated,seems to be a mixture of Bence a Jones light chains plus amyloids .
I know from my husband his IGg bence jones light chains,show no protein,but it effected his kidneys.with Amyloids there are only 600 cases a year and only hospital is the Royal free hospital in London.
I do hope you find someone who can help you more,have you tried Ellen on the free number above????
Eve
Hi David
Why is attendance allowance not an option??????
My husband gets AA he is 69 had it for three years,it’s not based on how much money you have,it’s your right,day AA is about 38 pounds,full AA is 78 pounds,if you have a carer who does not earn any money you can arrange a carers allowance,I do not get it as I have a pension.
I would contact pensions or Mac Millan ,as you have to consider all things about personal care,if you do not have a carer you can consider getting one in,which will help pay for personal care.EG you need some one to help you,plus drive car for you,help you at night,as this Myeloma progresses you will need these things,
Get what you are entitled to,as after paying in a pension for over 40 years,the chances of a long life are reduced. eve
Hi Dick
After 3 years plus on this roller coaster and learning an awful lot on the way,plus hospitals have very different ideas about when treatment should begin plus how test are interpreted !!!
We have come to the conclusion ,when you have your BMB have bloods taken before hand if you need any bloods or platelets have an infusion ,then they can see in detail how effective they are on slides,plus have an MRI Scan around that same time,it will give a full picture,of your Myeloma.
I feel this wait and see policy is ok on someone who will not be going forward for SCT,but you are relatively young,with a young child,and should be looking at a back to back SCT.
Why don’t you get in touch with Jet,you will find her on UK Myeloma via Facebook!!!! There is a separate group of people who have back to back SCT,Ellen on here should also be able to help you get in touch with Jet,as she is in contact with her,do ring Myeloma UK free number.
At your age you should be looking at hitting it hard while your immune system can take it,SCT then a good period free of treatment,3 years of constantly swallowing tablets not only knocks your immune system,but causes other problems along the way,you know yourself having liver problems.
My own believe is they now have enough knowledge to do individual treatment,as they know exactly what type and individual problems people have from BMB,they waste a lot of money not doing individual treatments for patients,this causes problems for the individual people eg immune system,liver,kidney problems,which effects the quality of a persons life,and it’s what patients die from not the Myeloma.Also as the Myeloma progresses,it changers,eg non Secretor or high risk,
Everyone has to weigh the risk of Back to back SCT,lots of people try to put ordinary SCT off until necessary,but if the original SCT has not worked,you do have to contemplate tablets for the rest of your journey with all the hazards they bring,or a chance to be free of no treatment like Jet. Food for Thought,I wish you well Dick.
I do not come on here very often as so difficult to get in on my I pad,so I use UK Myeloma on Facebook which is not an open site.I do miss many people on here,but when you get to Slims position there are more lows than highs on this roller coaster,but I do look in to see how you are all getting on.good luck to you all,it’s time to go and smell the bluebells again.Love Eve
Hi
I would agree with Rebecca,I think it is very important to know at least the basics in terms of bloods and results of test,so this has been my job as a carer,but saying that I do not always tell Slim the whole facts unless he ask me.
As time goes on other factors come in to play,that may effect your body,in Slims case it was a blocked artery and although successfully treated,it has added to his problems,so some times it’s best not to be too honest with replies and try to look on the positive side of test!! What is not showing on scans!!!! Can be more positive to a patient,for example not having a bleed !
So I can understand a consultant not being as factual as time goes on,or as the Myeloma causes extra problems to the patient,but they do forget that some times a carer does know what is good or bad information.
To give the doctors some praise it must be hard for them to decide how much information should be passed on,by law I suppose they have to deal with a patient,and what is in there best interest,but at Slims stage it is more important that I know and can check things are being attended too,as no matter how good,mistakes are made,and being the carer can save a patients life.
Hi Poppy
Fiona is right,take the time now,as time goes on your gran will not be able to enjoy your company.
People choose there own time to die,so no one can give you a time limit.
As long as your gran is comfortable and not in distress or pain,it will not matter if you are on holiday or not.
It’s a sad fact of life that many older people are not diagnosed until a fall or broken bones,if your Gran is not responding to intravenous antibiotics,she will succumb to an infection,and no treatment means the Myeloma will progress.
You do not say how old your Gran is,which I would say has a bearing on how long she can or wants to fight this illness. So make the most of time now,do not put it off and have regrets.Eve
Hi Ali
As Helen says ,it’s good that life has been normal for sometime and the Myeloma locked away!!
They usually pick up the Myeloma in the bloods,so the cat scan could be old damage,did mum have damage in the same area last time!!
If it is a new Plasmacytoma it can be dealt with on Chemo,Slims old damage and new damage showed on a MRI Scan,so try not to think the worst,and I know how hard that is.
Ali just remember ,that lots of people on here know how you feel,as we have been there and understand . Love Eve
Hi Andy
We have been having whoops!!!!,so I thought I would tell you about it! So you have some idea about Whoops,s!! Lol
As you know Slim was in hospital discharged yesterday at 1 pm, home tired and looking forward to bed!! I was reading his discharge letter,because I had asked early about blood results,only to find his HB read 75,eventually I spoke to a doctor,and was told to go straight to A&E for emergency blood transfusion !!! 2.30pm
On arriving cross match taken wheelchair job to another unit,only to be told,no wrong unit,go back to A&E,still waiting at 7pm until bloods came,left Slim there with the knowledge he would have 2 units 3 hour job,arrived at 9pm,he was still on first unit,when I queried this!!! A doctor gave us a lecture on the NHS,instead of explaining why no one had told us it would be a six hour job for bloods!!!!,not a happy bunny.
As I pointed out ,he would have been better either admitting him,or coming in the next day!!!!
They then moved him to another ward,still to be discharged when blood finished,we eventually left at 12.15 am and arrived back at home at 1am.
No apology,no explanation ,so now I have a very tired husband,with a chest infection,who was treated as if it was all his fault.
I know from previous complaints are air brushed away,and it’s very sad,because there are dedicated staff there.
To treat a very sick person to that ordeal is so so wrong,this all took place in Canterbury Hospital.,
Now that’s what you call a WHOOPS Andy.Love Eve.
Hi Andy
Yes I am very tired,you would think with Slim being in hospital,that I would have some peace of mind???.
Any way he is coming home today,and will feel far more comfortable with that.
He has to go into A&E,you go through the whole routine,3 hours on A&E moved to back room,no beds,he was moved to a ward eventually, not specialised,they only have six beds!!!! Which are always full,they new his platelets were only 5 and I kept asking about them until I left at 8 pm!!!!! On order!!!! This is from being admitted at 8am.
Not a happy bunny,hence a 4am post.
Must have a look at his risk assessment when I go in,the last one was so incorrect,
My aim is to keep Slim at home,but has had 2 admissions in two weeks,will be on there door step first thing,!!!!
Keep well Andy,those Whoopsies will have to stop,April is to nice a month to spend even one day in hospital,you cannot smell the blue bells from there. Love Eve
Hi Andy
You are at the stage of the game were it’s important that every thing is under control,and you are making the right decision ,so all good,try to think back when you were a novice at this!!!!,now you go in and know more about your condition than most of the people you are dealing with!!!! Or do you go straight to unit and by pass A&E.!!!?????
Bit fed up as have just returned from hospital,called ambulance at 7 am,no beds on unit,in a ward with respirator problems!!!!waiting on platelets and intravenous antibiotics!!!!
So Andy be grateful!!!!,keep your chin up and keep smiling, love Eve
Hi Polly
I read Pat,s and Arnie,s opinions as well,interesting reading??.?
I like the way you substitute fat for curvy lady,and as I am fat,I won,t be singing,!!! Lol
Seriously Mandy,start fighting,I hate the word fight!!! But your attitude,your will to live will carry you a long way
I would urge any doctor not to have a set agenda!!!,they are so wrong to put there believes on patients,there attitude should be,truthful in facts and optimistic about outcome,with a belief in the patient to prove them wrong.
Make sure you keep in touch!!! One day you just might see me there,never say never is my motto!! Life is on hold!!!!but Myeloma makes you realise,dreams have to be lived. Love Eve
Hi David
No surprises there then!!!
Saga was originally a family organisation,a couple of years ago the man who owned it sold it to the AA.They have since sold it on to an American company,it is now far removed from the original company.
I live 15 miles away from Folkstone which is the main head quarters ,I use to have all my insurances with this company,and it was an excellent company,now I would not touch it with a barge pole,it is about time these companies were named and shamed.
I hope the man concerned wins his case.Eve
Ps: there is nothing in the local papers about this.
Hi Carol
No hair!!! Scar on chest!!!,you make me laugh some times,but in a good way,were,s your ozzy spirit.
Tell them to get this thing out,you want to look good on a Ozzy beach!!!!.Eve
Hi Mandy
Why not ask him what he would do if he was in your position,????? But still get another opinion?????,they all have different school of thoughts.
I can only tell you,Slim was basically told,no treatment,would support him so go home and die,he is now being treated by another hospital after a second opinion,and yes we realise he still might die,but he will die fighting.
There are no long term plans,daughter is coming back from New Zealand with grandchildren,something to look forward too.
Went out for dinner last night managed to last an hour,finished him off for today,but we enjoyed it.
Wheelchair job along the front this afternoon,France looking great across the English Channel.
Mandy if your life is going to be short,get on with it!!!!,if you worry about tomorrow it will spoil today,we do not have tears,there will be plenty of time for that after,I begrudge the time spent in hospitals,but if it buys extra time,I have to accept it. We try to keep the Myeloma locked away, very hard as each day brings different problems,good days bad days,hospital days,A&E days,cannot plan anything in advance,and I can tell you now no one,doctors,nurses,friends understand or even comprehend his position,so I would not even con tinplate understanding what you are going through,don’t give up learn everything you can and enjoy everyday,Andy would say life is a gift,and he has a good attitude about it,unwrap each day and enjoy it. Love Eve
Hi Carol
Slim had the opposite of you,when they put it in it took over 4 hours,lot of pain,and because of this when it was removed it was day surgery,it just slipped out,after being in for a very long time!!!
If it’s painful get it removed!!!!,did they realise they left it behind????
It should be a day job surgery.
Don’t,forget to say hello to oz for me,one day the figure of eight is on the cards.Love Eve
