Hi Min
As you know Slims on clinical trials,and must admit some good some bad has come out of it.I do not think it is wholly for are well being.
First you have to ask yourself does the consultant feel so strongly that this medication is the best he can give: the answer should be yes
Second Is the consultant just interested in advancing his own cv.
The reason I ask this I know someone who goes private ,under the same consultant who backed these trials.
the medication given to this person is Velcade with the usual cd and zometa.
under trials you have to follow a route ctd or crd velcade is second line.
Therefore the consultant must feel Velcade offers the best chance,
but what choice do you have a consultant can not back the trials,and be pushing for Velcade to be used as first options.
I believe Cameron made a speech about cancer patients having the right to cancer drugs,i think he forgot to tell NICE.From what I have found out Velcade is used in Europe as first line. Eve
Hi All
We find are senile moments very funny at times,were does the day go,looking foe keys can take up time,My husband refuses to go in my handbag,he claims he could loose his hand in there,the more we try to be more methodical,the worse it gets how many pairs of reading glasses get lost!!!.then add this Myeloma to the mixture with all these mind blowing drugs,lack of sleep,tiredness,and general lathargy,you get Saga Junkies 🙂
What worries me is we become the children,and the children become the parents,they look at you,if to say now come on children get your selves organised:-S 😛
When I was hitting fifty MY thought were on The f words.= Fifty Fat and Forget about IT
When I reached sixty they turned to S words Sixty Stupid and Senile.
I have other words for F and S but if I used them on here,they would ban me.
So Dai you are not alone,just hide it from your kids,my daughter keeps telling me she,s got a home lined up for me,and I keep telling her,I am spending her inheritance!!!!!.Eve
Hi Gina
I was just thinking the same as Jill how are things going with your mum
love Eve
Hi Dai
Left Liverpool 40 years ago,no regrets,when I first came down here,everyone thought I was Irish LOL now I have a plum in my mouth they think I am Welsh.
I know the Isle of Sheppey,few years since I have been there,Deal name fame is they lost 11 bands men to IRA bomb,they were all musicians no threat to anyone,most 18–21 years old.
I do love Kent,most days you can see France I just wish I could import the northern sense of humour I need it after today:-P
I have worked it out why they give you a week off starting on Monday 5 August we have hospital,Monday,Tuesday,Wednesday and Thursday,not a happy bunny:-(
Still trying to work out why?you must have heard the saying(cannot arrange a p—–in a brewery) thats what it feels like but nothing to do with nurses who do the chemo,
Enjoy your holiday it will do you both the world of good,I have lots of lovely memories of Wales.Eve
Hi Jean
He is not to bad in himself considering the ctd has not done the job for him,and now started Velcade,another learning curve, 2weeks on 1 week off just started the week off.
he is not looking forward to having bone marrow taken at end of every cycle, but that is now the only way they can tell what is going on.One minute we are looking at going into remission,but not recommending sct,we thought that was disappointing,only to be told Myeloma in bones has increased,it is funny when they tell you,you just not prepared for it. takes awhile for it to sink in.
Any way enough of my problems,good job i love G&T it works wonders LOL
Best Wishers Eve
Hi Pauline and Jean,
Jean and I have had this conversation before,you will find Pauline there are a few others on this site with partners they feel like strangling some times,even with out the illness,that,s part of them,
I think jean and I came to terms with ,what was going on instead of getting angry we took the view( their body there life )it stopped my blood pressure going haywire.
I think he would miss you terrible if you were not there for him,so in some ways you do have the upper hand,it does not mean going on pills,he just might have to speak about all his fears,we all have them,my demons wake up at 4 am.but I do not tell my partner my fears.:-)
He knows deep down,he is being irrational,but cannot help feeling like that,do you have a support group in your area,may be he could find someone,in remission who is ahead of him,worth a try. Eve
Hi Russell
Bone Marrow is the only way to confirm Myeloma 100% it does show in bloods sometimes and sometimes it only shows in Urine there is about 5 different types of Myeloma,and there are related conditions.see related topics!!!
As I said you are young,looks if they have found it early if you look at home page and go into video,s there is a lady there who has had it for 23 years,and i know someone who,s husband lived 18 years with it.
So there,s it lots of reasons to remain positive it is when you do not know any thing about mm,that,s the scary bit.
Good luck Eve
Hi Dai
Thought i would let you know Dai Slim did not have Picc line,but solved his problem after last week looking like a pin cushion,bought a cheap hot water bottle fill it and wrapped it up in pillow case,applied to arm while waiting to be called in,works a treat,and no time wasting looking for veins:-)been to hospital this morning,have to go back for 1 oclock,but Velcade shelf life is three hours,so going in for 2ish.
No side effects except feels,he is sitting with the back of his neck to a fire,but it does not feel hot to touch!!!,having a few problems sleeping,said it feels like his body is in 3 parts and does not fit together.
Regard Eve
Hi Tom
Have we missed you yes,yes yes,we thought you got lost in your jungle of cucumbers.We are in need of some cheer on this Forum,as ever one has been having hiccups,and the people who are doing well are reluctant to post ,
Kitchens do keep you busy though,mine is still not quite finished little things like light and blinds,but we will get there in the end.
So nice to hear from you Eve
Hi Pauline
In life we seem to find this energy to cope with what ever comes our way,my husband has the same view as you,why worry about it,if you cannot do anything about it!!:-S I how ever try to jump there hurdle first,so i can make it easier for everyone else to get over.
He is the Myeloma sufferer I am the carer,but this diseases has taken my life away too!!!so we both suffer in different ways and handle the situation ,we both,do not express how we feelings.
I think you husband,need help,I think he has kept all his feelings in to spare you,and now he is in remission,he does not understand why he should feel like this,especially when you are so positive.
Depression is an awful thing,and men do not admit to it,do not feel he has rejected you,get him help and give him a big hug,
Hope this helps.Eve
Hi Carol
You are allowed a copy of all results,you do have to ask for them,I have most of Slims results,but some take a couple of weeks to get back as test are done in London,Leeds and Birmingham.
Any department in hospital can only give you result they deal with,computer does not allow them into anything not connected with there dept.
What your not allowed to see is patients notes,comments by doctors,thats what you have to pay for.
It was £20 years ago,for admin cost of someone photo copying them.
The funny thing is my daughter,often has to visit 2 hospitals in one day,and see different consultants in different parts of hospital with her son,and they actually give her his file to take with her around the hospital!!!
I took Slims KappA Light Chain results to my own doctor,and she was very honest,she said she did not understand them!!!
I saw a Myeloma Trials Team Nurse and she explained the result to look for the MRI and Cat scann results I can read myself and anything i do not understand,I know a person who does or I google it.
I agree we should not have to ask,we should be given a folder with all results as they come in,I have made my own,in ITU it came into its own,as doctors could see results from different dept with out having to go to the computers,even simply thing like information leaflets on condition,I became known as the lady with the file.
My beef is when something unusual eg:bone marrow taken as only way to know how Myeloma is progressing——-they have told us this,but not why????
and trying to find some information is hard.
regards Eve
It is sad news,but not unexpected it was so nice of Gaye to think about us,and to make sure we new that she has passed away.
That is consideration beyond the grave,such a thoughtful woman,putting her house in order,she will be remembered with big smiles on this site:-)Eve
Hi Ivan
I can understand you not wanting to spend time off work,but at least you are being looked at,have you got a good boss?.
Do not let it get you down,You will find in time,that you become more accustomed to these little hiccups,best that it is dealt with early,
MRI scann will show any bone damage on spine,if you look at some of the other post you,will see how easy it is to brake any bones,so take it easy and if you are on Zometa,or another bone strengthener your bones will improve.
Slims never had peripheral neuropathy,,so cannot advice yot on that,Keep your chin up.Eve
Hi Russell
Welcome to a club nobody wants to be in!! but we are and it is not only informative,but some times funny,but you will have more fun,in the under fifties ,they are allowed to swear when you get angry ,older ones swear in spaces h-e-l-l.!!:-P
I see it was 4 am when you posted,we have all been there at that time,its when the demons come out,all soughts of things go through your mind not very nice ones,bit early for G&T as well;-)
I am a carer,so its a big club. mixtures daughters,sons,wives and husband.and then the important person,the person who is Suffering with Myeloma.They all can help you,no your journey.
Any Questions just ask away.Sounds as if you have been caught early.
Good Luck Eve
Hi Dai
I do see were you are coming from,but we do need a spokesman or woman,who can explain the way we see things.Have you e mailed him.
If you are coming to the end of treatment,may be they can give you extra dex and have a dexy day LOL
Glad to see you being positive remember you are living with cancer not dying with it,living in Deal in Kent is too far away other wise i would be there just to support you,but your Janet will do a good job.
Must go another marathon day at hospital!! best wishers Eve
