eve replied to the topic Bence jones 24 hour protein test. in the forum Newcomers 11 years, 8 months ago
Hi Alco
You can not base having Myeloma purely on urine,other factors are taken into consideration.it is not worth going into unless you are diagnosed with myeloma,low white blood cells can open up many problems,so do not go scaring yourself thinking you have Myeloma it is uncurable.
Go back to your doctor or speak to a well qualified…[Read more]
eve replied to the topic Carfilzomib (Kyprolis) & Myeloma 5 Trial in the forum General 11 years, 8 months ago
Hi Dai
It is good news,I hope if the medication you are on does not work I hope you get this one 500 people only,as you said it has to show in urine,
I worry that as Slim did not respond to thalidomide how well will he do on Revidimide ,and if the same conditions apply,he will not qualify for the new trials.
Any one heard from…[Read more]
eve replied to the topic Gill's Information Bureau in the forum Off topic 11 years, 8 months ago
Hi Dai and Jean
We are suppose to be getting all these new people to tell us about themselves plus post a picture!!!!!
Dai Slim has had CDT plus Velcade next should be Revidimide,!!!!!! We though we might get 2 years !!!,,the only way we new it had returned was I asked for BMB as it does not show in blood or urine!!!!!!!?. We do not know if…[Read more]
eve replied to the topic Ian's birthday and MRSA in the forum General 11 years, 8 months ago
Hi Maureen
Take everything they offer you it will help in the long run,I look back at the first time and thin how an earth did I do it,things also had to be changed at home,a shower instead of a bath,wooden floors in stead of carpet,the list went on and on,and some how I managed it.
This time I will not have all those problems but I am…[Read more]
eve replied to the topic At a low point in the forum Carers 11 years, 8 months ago
Hi Leedslass
Sorry but I do not know you name,I see this is the first time on this site,how you ave managed without it,I do not know.
You need some form of help,but only you can decide,as good as family and friends are,they have no idea,what or how they can help unless you tell them.
This illness brings depression with it,not just for the…[Read more]
eve replied to the topic Happy 1st Birthday to my Stemcells. in the forum General 11 years, 8 months ago
Hi Babs
1 year it soon passes,enjoy your holidays ,after last year make this year count. I envy you going to Australia ,we always said we will go there and hire a motor home and do the figure of eight.
Best Wishers Eve
eve replied to the topic We have dates in the forum Treatment 11 years, 8 months ago
Hi Jacquie
Congratulations ,just go with the flow,as every one says it is doable,harvesting stem cells is a bit of a haul,let's hopeitjust takes a day,things just fall into place from then on,all hospitals are different how they deal with SCT.
The only advice I can give you is,do not go out and buy new night clothes,plus take in you own cup…[Read more]
eve replied to the topic Gill's Information Bureau in the forum Off topic 11 years, 8 months ago
Hi Everyone and Dai
My name is Eve I use to be Slims partner for 31years,no intention of marrying felt we did not need it,how wrong could we be.
We married in ITU on the 26 of April 2011.
In Febuary 2011 my husband was diagnosed with Myeloma.
Slim and I are both retired,and have had a wonderful life are last 15 years have been spent…[Read more]
eve replied to the topic Bence jones 24 hour protein test. in the forum Newcomers 11 years, 8 months ago
Hi Ali
You would be better you rang the myeloma help line t speak to Ellen or another nurse.!!!,
Every one on here can tell you there story but it will not help you .Go back to y our GP and keep pushing until you find out why your white cells are low,the problem with Myeloma is a GP. Might only come across 1 case in a life time and people…[Read more]
eve replied to the topic Ian's birthday and MRSA in the forum General 11 years, 8 months ago
Hi Maureen
Well what can one say,it's one thing after another ,this is we're the family have to help out,even if it is just for an hour to give you a break.
In Ian,s defence he most properly does not realise how everything. Is taking its toll on you,but it does not mean you have to sit back and take it. You do have to find you own way of…[Read more]
eve replied to the topic new arrival in the forum Off topic 11 years, 8 months ago
Hi
Just something might be of interest to DAi and Jean,if I am correct you both have children on the isle of shep who both wrk in the prison service,Am I correct?????
Small world.Eve
eve replied to the topic Shaving head in the forum General 11 years, 8 months ago
Hi Jean
I did not need to shaves Slims head,but he did look funny with tiffs string out,in the end just cut them down to nothing,then it just went by itself down the plug hole.if you have the nerve you could do it yourself .Slim would not let me near him with a razor for his head or face.
Even in ITU a nurse offered to shave him,but would not…[Read more]
eve replied to the topic Elephant In The Room in the forum End of Life and Grief 11 years, 8 months ago
They should let me in the under fifties,then I could really let rip,and I feel like it after the day we have had,people seem to think because you have grey hair,you should not have an opinion ,and being 5 foot nothing does not help.
Just so angry,have had a few beer,s to relax me,but its not working.will have to try vodka,works for you…[Read more]
eve replied to the topic Elephant In The Room in the forum End of Life and Grief 11 years, 8 months ago
Hi Tom
His pubic hair never came back. Lol.Eve
eve replied to the topic Plasmacytoma in the forum Related conditions 11 years, 8 months ago
Hi Peter
Since 2003 you have done very well pity about RT but if it solves the immediate problem,then it must be worth it.
10 years to anyone on here is all good news,the fact that you now need more treatment is a bit of a bummer,but that's what we are here for to support each other when times are hard,age does not come in to it.
Slims…[Read more]
eve replied to the topic Elephant In The Room in the forum End of Life and Grief 11 years, 8 months ago
Hi Sue
Well Sue the reason they say oh,and walk away,or go in as you come out,is they cannot face it and by looking away they think it will not happen to them,but when something like this happens to them,who do you think they will go to for support and advice,I am sure I do not have to tell you the answer.
I had a conversation with a…[Read more]
eve replied to the topic Elephant In The Room in the forum End of Life and Grief 11 years, 8 months ago
Hi Tom
We only live 20 miles from France,and they are so moterhome friendly,believe it or not its cheaper to spend a month in France,than a week in this in UK.So if we manage to go away it will be France.
Now Slim looks well,if anyone ask how he is I say fine,because if truth be known they do not want to know!!! And they don't want to know…[Read more]
eve replied to the topic Elephant In The Room in the forum End of Life and Grief 11 years, 8 months ago
Hi Min
I suppose the difference is you have been there I have not,I do not know how I will feel,that is yet to come,mt daughters think I will go off in the motor home,but you cannot say until it happens,at times I do wish I had my life back instead of being in this bubble,but I do know people who are no longer in the bubble but life has not…[Read more]
eve replied to the topic Elephant In The Room in the forum End of Life and Grief 11 years, 8 months ago
Well I can only speak as as Slims Wife,I dread it all coming back,and I do have my blue moments.
Slim is just the opposite he does not worry at all,but he does not sleep a lot ,when I ask him is he is worried it will come back the answer is no.
His attertude is ( I never expected to live until I was 28 so everything. Else is a…[Read more]
eve replied to the topic 1st relaspe in the forum Newcomers 11 years, 8 months ago
Hi Paul
Hang in there it is going to be worth it,the fact your still working is a lot,tiredness is one of the symptoms my husband had,but not the moon face he did have a rare side effect painful scrotum .very rare!!!
At least having your treatment subcutaneous saves time.
Jo nice to hear from you take it you are ding fine.??? Love Eve