Hi Ivan
The service for cancer patients seem so different through out Uk'
I have at least 3 telephone numbers and 1 is 24 hr even holidays someone is on call.
When i have used it,I was told to go straight to A&E second time to call ambulance but both times a nurse from the unit met us,and i have been told in future to ring in,the reason for this they can have results of infections within one hour and start treatment straight away,and this is very important!!
At first I made the mistake of calling my doctor out,Slim was confused and just not right,I thought he had an infection,told NO by docter,5 days later in ITU with septic pneumonia,did not have any of the usual symptoms,I just new he was not right!!
False alarm or not I ring number and i must admit even if they told me nothing wrong over phone,if I felt there was I would go to the hospital!!
It nearly cost Slim his life and damaged his lungs,and put his treatment back 7 weeks,
So do not take no for an answer regards Eve
Hi Cathy
I have to ask do you know what CDT is!!!! Eve
Hi Ivan
Have you been on the booze ,!!! gout only joking, never heard of it myself,
The pain must be bad for you to come on here and mention it!!!!
You must remember Ivan,that most gp do not know much about mm!!!
Have you not been given numbers to ring for any symptoms !!!!,If you feel so unsure please ring the number,??
Ring tomorrow!!!! might be something very simply,keep smiling :-)eve
Hi Sarah
How are you holding up,I hope the family are keeping you busy,but still finding time for your quiet moments,The harvest must be gathered by now,Hoping you are drawing strength from every thing around you.
best Wishers Eve
Good for you Dai you have my vote love Eve
Hi Craig
Can I suggest you look under Treatment (up date on cycle 5 of Velcade )!!!
It might give you some in site to the problems,we have it is mainly the last 6 postings.
I was trying to find someone who,has Bence Jones kappa Light Chain,who like My husband had 6cycles of CTD who was considered to be going into remission.bloods good kappa chains good,but because he is on MX1 trials,bone marrow taken,found to have 80% mm in marrow?????
Now starting 8 cycles of Velcade.
Because of lack of info not knowing were,why or how test are done,I have had to resort to try to find someone,with same results,!!!!!
I want information,and as good as the team are they do not have the time to explain things.Regard Eve
Hi Min
Have you ever considered the pay per hour.24×7=168 hours divide by that into 73 pound.answer peanuts and I am not a monkey
Min I am surprised you do not take something to help you,I will be honest with you,I would ring up and book an emergency appointment,do not take no for an answer,The reason I say this,is when your crying or shouting people do not listen to what you are saying,but if you come over calm and collective it works,and this is what pills do they put you back in control.
The tears can be controlled and the future will look after it,s self,you cannot change that,but I do understand your fear.It,s always just beneath the surface,you cannot talk about it,because it is negative,and what they need is for carers to be positive.and being tired out does not help.
When Peter comes home,bed is the right place for him,give him a chance to rest and keep him away from germs.
As to the kitchen ,it might make them work a bit quicker,don,t go soft on them,and make them cups of tea.!!!you have enough on your plate with Peter and the dogs.Rest as much as you can. love Eve
Hi Cathy
My names Eve and I am a carer,6 months ago i was standing were you are now!!
I can only tell you this site is full of nice people,who will try to help and keep you positive as much as they can,they will be there for you in good times and bad.
Some people sail through this treatment go in to remission,and we all cheer
Some people do not and everyone will be here to support this person.Saying that it is not all doom and gloom,I come on this site and have a laugh most days.
People are all different and medication effects people in different ways,that is why,this mm is so hard there is no magic format.
Welcome to this site,its a bit like a roller coaster, best wishers Eve
Min
You are right,Slim made me Laugh the other day,he now worries something will happen to me,he said to me "you do realise if you get ill i will not be able to look after you" I found that very sweet. I promised him I would not get run over by a bus. LOL
Eve
Hi Bridget and Min
Just what i need,informed fact with a bit of humour,thought i might be upsetting Dai before his holiday and i would hate to do that,have been sitting thinking consultants just do not have the time to explain,we should all get these results without having to ask for them,and as you say Min an idiots guide to help us.
I do get a lot of results on demand,but get told sometimes next time you come in!!!
You are right Min that is the Ratio figure,the full line reads
kappa 163.45——lambda 11.14——-k/l 14.672 have been told it is the last one that counts.
So remission,but his marrow says it has increased.!!!!
I do realise a lot of people do not want to know and just go along with things,sorry this is not me,I accept nothing on face value and when its someone you love,then you need to know everything.
Bridget I asked about MRI scan instead of marrow biopsy and was told it will not show what is going on with bone marrow!!!He is having another MRI because he is never out of pain,and in one place it has been there from the start,so having another look to see if there is more damage because of results,He is not very good to admitting to pain but the fact that he takes tablets,init,s self is enough for me to know how bad he must be.
Thanks for all your info I do feel a little bit more informed but i would like to hear if anybody has had the same results with the bone marrow!!!
Love Eve
Hi Dai
I am not being stupid am I???
If Kappa light chains results are correct!!! bloods are correct!!! why is there 80% Myeloma in marrow!!!
If I new the answer!!!
After the last results in may we had a telephone call to say bence jones kappa light chains were down,but Slim did not ask how far,since then I have been waiting on results,when they dropped the bomb.80% in bone marrow!!!
Thought I might find someone who had the same results.
Sorry last thing I would do is make you nervous,just though you might have some answers for me,because in Slims case they are saying the only way the can see what is going on is biopsy of bone marrow,!!!
Go and enjoy your holiday,if I had realised what this did mean,I would not have explored the whole thing,for all we know readings could be wrong,will try to find out more results on Tuesday. Eve
Hi Dai
This is getting interesting!!!! I know that the results come from birmingham university.I have some results.i was told that Kappa/lambda was the important one and they read as followed
22/2/11— 258.458
15/3/11— 239.611
05/4/11—- 121.425
31/5/11— 14.672
I have not yet been given June /July/August results I have asked still waiting,blood and urine are taken for trail plus 24 hour urine,some specimens go to Leeds,some to Birmingham and some go to Royal Free hospital London.
I have had to ask for this information,I do not know how the test are done but I will find out if they are Freelight test.!!!!on Tuesday when we go again
Sedative what,s that Dai !!!!even if it did hurt do you think he would admit it!!!!,he is a man who doesn,t admit to pain and thats half his problem,I know when he says he is in pain it must be bad,he broke his ribs in Norway and went on to come third in a 20k race on ski,s with heavy back pack and rifle. I find I have little sympathy for him sometimes
Thanks for that information Dai I will look into it,I will be very upset if I find out they have not freelight tested,because,that means he could have been treated with some other drug sooner,(watch this Space).
We are 86 miles from London,So there is no excuse!!!love Eve
Hi Dai and Min
Slims on Meloma X1 trials,he has Kappa Light chain MM.After the first Stage of treatment,24 hr urine bottle and bloods every cycle,they did another bone marrow biopsy and to there surprise found his mm had increased in bone marrow.
I think what they normally assume is urine kappa light chains down,then you are in remission,not so in this case,in fact increased to 80% only showed up by biopsy hence 8cycles of vcd.with biopsy taken each cycle.
Not good news for Slim,but if he had not had marrow taken for trials,they would have assumed he was going into remission,!!!!
He has had dexa scann and the result is " Above average BMD for age in proximal femur.
Waiting on MRI scann to see if pain is from more damage,do not think it is from tumour as chemo is just as effective as radiotherapy and therapy is only used if causing nerve damage,but they will look at it once they do MRI
As there have never been any symptoms eg: out of breath,cough,chest pains,no usual symptoms only infection levels in blood not quiet right.there is no way to tell if he has blood clots on lungs,again cat scann,only done because infection levels not right,that,s why I would like some follow up,If no joy on cat scann I will go private for that.
I hope this all makes sense to you!!:-P
Now Attendance Allowance Slim is 66 so not allowed DLA,Care Allowance is Taxable,so waste of space for me.He is not going to die in the next six months,so that rules out Dying Allowance.
He does need me to help him through out the day and night as he cannot do some personal things for himself,so I get attendance allowance.I also make a good cup of tea,2am 3am 4am 5am 6am,cost me a bomb in match sticks to hold my eyes open:-S
I can see were you coming from with SubQ I asked about it,I think with Slim being on Trials it is a no no!!! they are very precise about,where,when and how concerning all the treatment,you can not deviate ,not allowed.:-0
Min hope you are feeling much better, Love Eve
Glad you will raise a glass for Slim,He has always loved a drink,the poor b-u-g-g-e-rs went off drink and has to sit and watch me hehehe,i have a mean streak in me!!!!!
Hi Dai
if you can,i would like to ask you a few questions or if anybody looking at this post who could answer them,
Its about the Velcade,Slims on 2.3 at the moment 2 shots one Tuesday and one Friday, 9 oclock bloods then although told to come back at 1 oclock did not get jab till 3.30 .left home at 8 got back at 4.30. (screaminggggg) poor dog desperate for a leak.:-P
Will not do that again, in future 9 for bloods,then go home 5 for injection,2 round trips 60 miles altogether,At least Slim will have a Rest,and £73 attendance allowance will pay for petrol.:-)
Now to questions,Slims bone marrow is 80% affected,he is on a 3 week cycle and will be having bone marrow taken each cycle as only way to tell how myeloma is doing,bloods and urine not true reading,myeloma has advanced after 6 cycles of ctd.how do they judge your Myeloma?????
Did you have any side effects after first two injections ,Slim has none,except feeling dizzy when lying on his back,so up most of night!!!!
Waiting on MRI scan for pain in back,would have liked cat scan as well,because no follow up on lungs,after septic pnuemonia,although he has injection every day and will be on them for 6 months,now with Velcade the chance of dvt is there.so may go private for peace of mind.
Has anybody out there had these problems?
Do not worry if you do not have time to reply enjoy your holiday and say hello to those beautiful wild wild cliffs of St. Davids:-)Eve
Min
Why an earth are you running yourself down,i know how tired and shattered you must feel and how worried you are,but to think you are not a good carer against the professionals!!!!!!,
You are for getting you are married to an ex service man who,s form of defence is to attack ,and the sad thing about this in a few months he will not remember a bl…dy thing about this with a temp at 39.3.you should never have been in this position in the first place,So don,t you dare run yourself down.Your worth much more than that!!.
Have a good cry wash your face and put a new face on,there is a saying"you always hurt the one you love" and I would bet Peter does not realise or appreciate what you have been going through,but what do you expect, he is an ex service man,tough little cookies they are,and they expect there wives to be the same( had my rant ) keep you chin up.Eve
