[eveParticipant]

Hi Alison

Welcome to the site,Good to know you have plateaued,and are back at work ,my husband started treatment in February,CDT,but has had to start Velcade.
SCT is not recommended by his consultant,because of damage to lungs.we do not have that option to decide yet.:-(

There are a few people on here who have chosen not to have sct,because of kidney damage,one is Jo,she is on holiday at the moment,but i am sure she will reply to you when she gets back.:-)

Glad to hear of some one doing well,good news is always welcome.Eve

[eveParticipant]

Hi
I often wonder how many people die with it not being diagnosed,if you think the average age is 70,do doctors bother to even,go along the myeloma route???

Young people seem to be getting picked up earlier while older people,have usually broken bones by then.
so is the numbers higher than3000 a year in uk who get this disease???

On lighter note Cannabis is known to be good for arthritic ??? so send Stephen up to the loft straight away

Love Eve

[eveParticipant]

Gill
I got a message from the web team and I nearly never came on this sit again,so formal ,no flower powering at all they told me they considered that my language was in appropriate ,and I do not swear?????The word I used was b-l-o-o-d-y,Since then if you go to put a word in they consider unsuitable it comes up in red,!!! thank god Tom taught me how.

Anyway my word is PROVENANCE

NCE

[eveParticipant]

hI EVERYBODY
It must be me,do I detect that men do not just take these poisons tablets,and say well doctors know best!!!!!!!!
If we do not take an active part in this illness why should anybody else bother!!!
I know I live with one!!
Sorry but we have to work together,I would like to see more co-operation between the medical profession and the boffins,they may be all excellent in there field,but as everyone tells us this is such an individual disease,and the patient is being told.
Yes you have Myeloma.FULL STOP.
Why should anyone wait 5 years to find out what will kill them!!!
Is it me,uneducated I might be,but ignorant never,
Jean as a carer you have rights,start learning it might be the only thing that keeps you sane. love Eve

[eveParticipant]

Hi everyone
How about

NOISINESS
Leaving NESS

[eveParticipant]

Hi
How about a nice easy one

YELLOW
Love Eve low

[eveParticipant]

Hi Jean
I use it all the time,If your unsure of anything there is a good library site,on here.
When this first started I was told Slim had MYeloma,and it was not compromising the cord,and that was it.Everything else I had to ask about,but when you are told new things your are in shock.Since then I have used this site and libraries to find out most things.I make sure I get all results mri,cat scan all bloods,kappa light chains,keeping a file helps me to know month by month how Slim is, it is easy to refer to when seeing doctors or professionals,example needing to claim attendance allowance,blue badge.

If you have facts in front of you,it is easier from your point of view to express you selve,I believe end of the day your body your results.

I do think with staff it is an everyday situation,and they do not understand it is a life or death situation to the family.The more you understand it,the easier it is to come to terms with it.Love Eve

[eveParticipant]

Hi John
Slim has the same problem,he is also on Velcade to,I have suggested a picc line but they are worried about infections.
What I do is try to get him drinking a lot before blood test,and I have bought a hot water bottle which I fill at home,and rap it up in a pillowcase,which is applied to his arm all the way to the hospital,it seem to have worked,before 2 nurses and four trys later not nice.So it is worth a try,bottles on for about an hour before bloods and treatment,
Hope this is of some help Eve

[eveParticipant]

Hi Jean
There is a book called Myeloma your essential guide.
It is excellent,you can read it in little bits to take it all in Myeloma UK should be able to send you one,I got mine from the hospital along with other books about cancer.
If you ask for results of test and use the book it helps you understand them,plus it helps to know when bloods are low in things eg potassium,then you can stuff hubby with banana,s and tomato,s LOL:-P
I find it invaluable . Love Eve

[eveParticipant]

Hi Ivan
how is your leg doing?????
Eve

[eveParticipant]

Hi
Mine is YOUTH

Leaving UTH

best wishers Eve

[eveParticipant]

Hi All
Sharon what are you on now.
It does not look if Slim will be given the option of SCT,because of lung damage with septic pneumonia,after doing 6 cycles of cdt and finding it has increased in the bone marrow to 80%,I have to wonder if trials are the right way to go?,they measured the success bench marker in free light chains,which actually was not a true reading only discovered when another bone marrow sample was taken,now he has to have bone marrow taken every cycle on velcade.

That is why I wonder if the answers may lie in treating it when it is contained within the bones,as you say David I agree not in Slims time,we are just buying time'
Slims believes there has to be a first,so again he will tolerate a lot of treatment,he does believe your mental attitude helps,Love Eve

[eveParticipant]

Hi Sharon
Must admit I search for everything concerning this disease,you just live in hope ,that there is something out there,that will work,and actually cure Myeloma.

I think the answer lies treating it why it is still contained in the marrow.
They are talking about 10 years research for Ecstasy.I also think some Myeloma,s are easier to treat than others,Slim has kappa light chain,and that seems harder to detect and is often found later,when the disease has well progressed.
Best wishers Eve

[eveParticipant]

Hi Sally
Good to know your dads feeling a little bit more cheerful,it is a shock to the system when you are first told,and there is so much to take in.

Slim found it easier to do a big chart with the cycle on,easier to keep track of the pills,he kept 2 pill boxers one for hospital pills and one for own doctors pills.
I think you will have to watch your dad when he is on the dex,because if your mum starts playing up,your dad will not be his normal self Dex does have a strange effect,I often had to remind Slim that the tablets did effect him,and made him a different person,so watch out for it.
best wishers Eve

[eveParticipant]

Hi
Just asked the brains
SEXILY
Now you can tell it was Slim who thought of that one!!!!!

ILY

[Author]

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