Hi Mike
Just a welcome to a exclusive club,be it that you are a patient carer family or friend.It is mind blowing when you are first told even if you are expecting it,I could tell you not to worry,but you will,your mind will still be awake in the early hours of the morning,but you will over come all this,and find out it,s not the end of the world,it,s just a different one.
The answer to your question is Yes,but again your employ has a duty of care and should be able to change your duties.many people carry on working all the way through treatment.It does depend on your body.
It does sound if you have been caught early,which in it,s self is a very good thing,lots of people sail through treatment have SCT and are out there,and you would not know they have Myeloma,and there is no reason why you cannot be one of them.
Good luck on your journey.Eve
Hi Alison
Kids are lovely,I could use a few sayings to describe Slim at the moment,but I do not think it would go down well on site plus,I do not think people (except Tom ) get my sense of humour,what I found very funny is my 2 granddaughters came to see Slim,and on the way out,asked there mum could they kiss him,they are 14 and 10??.I thought it reflected Slim so well,8-)
my other grand children also visit,there questions vary,they all ways want to know has grandad still got a bone in his leg,as that is the standard excuse for aches and pains;-)
That,s what I love about kids lol
Children take things in there stride,so tell your mum just to be normal around them,I think David described these situations once, if things are talked about,you kick the elephant out of the room.Love Eve
Hi Everyone
Looking back at Slims time on Dex during ctd and velcade,he started with 40 reduced to 20 after pneumonia and blood clots on the lungs.
Dex 40,hell to live with,played tricks with his mind plus hid how ill he was!!!
Dex 20,I had my Slim back,would have liked him with more energy and the will to eat!!!
Keith 4 days on 40 of Dex then weaning off,may be a good idea as slowly coming off them might lessen the effect.
That,s the way I look at it,and as long as they are checking for side effects it might be the way to go.Eve
Hi Everyone
Well all this is thought provoking,even in the middle of the night or in my case early in the morning:-P
I think you have two different levels of people with Myeloma here!!!!
Dia can I put you in the latter group of a very limited life span!!!{ no offence is intended}:-)
Then Helen who has taken CRD as first line treatment.
The question in my way of thinking is how many people who have had CRD as first line of treatment have gone on to have another cancer.This 2% to 7% are these figures just on these people?????Do you believe these figures? Do you think as a line of treatment it would stop because of such small %.?
As for you Dia I understand your position and say you are the ideal person at your stage to try any drug that is available.:-S
I would like to know more. Love Eve
Hi Everyone
Well I for one am glad that this subject is being openly talked about.
First may i say Amelia on Myeloma Trials which you should find info on this site,after SCT you are randomly picked for maintenance or no maintenance,Helen was luck to be picked.
Helen we need more people like you to get on your soap box,because with it comes information,and as a trials nurse yourself you know how much information the patient has or not has.;-)
I just find it strange how someone can make an assessment of Slim or me and decide if I do not ask ?,how much info they will give me ?
I have to be careful here myself as my soap box is coming out:-P
I wonder how they would have treated you if you were not in a privilege position. no offence ment
What I was trying to say,yes to trials,but if results are now showing a rise in blood cancers we should be informed as the goal post have changed,and it is your right to question,do you still want to be on trials, you have to look for that information,this might be a team effort,but sometimes they do not include the patient. Love Eve
Hi Mari and Ali
I hope you do manage to get away,will do you both the world of good,school brakes up soon,so that will be a rest for you Mari.
I agree Ali your mum is very brave,must be holding a lot of those emotions in,SCT is not only body draining it takes you in to another world of emotions,so your mum is holding her own,by taking control of small things like deciding about her hair,plus I agree with the son-in-law bit,I do not think if you did it you would be able to keep your emotions under control,just remember some times it,s harder for the person watching .Love Eve
Hi Dai
Well I would agree,and can see what you mean concerning damage to the skeleton,as you are aware Slims skeleton damage is extensive,but at least no compression,so the ability to put one leg in front of the other is there,even if there is pain.
My concern is you attend the hospital,bloods show no markers of illness,but as a carer I see a sick man,that I am told is ok,if I took him to a doctor,I would have nothing but my instincts,so this is were ( you are as good as you feel comes in ).If you do not feel or look good,are you ill???? or do you asses illness on blood works that might not be showing a true picture,may be because of drugs involved EG DEX,
On a more personal note i would send that doctor a post card every year,Saying still alive sorry I cannot invite you to my funeral.I changed Slims doctor after it was discovered by a different doctor in the practice after months of no test,but will not change surgery,as if I have to watch Slims decline so will he and i will be there to remind him. Love Eve
Hi Helen
Well to some extent I would agree with your outlook concerning second cancer,but I also think it depends on what second cancers are rearing there ugly head,for example percentage wise are they blood cancers,they must have some dater on it ??????
If for example it was causing (PCL) using that as an example!!! as we know of at least one on here plus a suspected one!!!,then no it has to be looked into.As first rule do no harm.
So yes I agree you take part in trials for help and to help,but I do think they could be more upfront with information. Love Eve
Hello Dai
I like the old saying ( you are as old as you feel ),I think this should apply to health, (you are as good as you feel )
Your bug or what ever just might have been that, a bug,that even without the MM might have knocked you off your feet anyway.I have just had the same with all the symptoms you mentioned.
As a carer I look at Slim,and see a man who is ill,but the strange thing is he did not get the bug,plus in general his bloods are health,or so I am told,but they do not reflect the picture I see,So are you are ill because markers reflect illness or can the markers not show illness,but you can see someone is ill.
Does that make sense Dai.Eve
Hi Mari
I know110 for Platelets is low,but Slims have never been above 50,so I have given in worrying when he walks into a door or knocks himself,apart from wrapping him in cotton wool,I cannot do any more,and my attitude is if internal bleeding is the danger,why is no one very concerned.!!!!
I would agree they need to be very stubborn just to get them through all this treatment:-PI Eve
Hi Etta,
I am sorry about your sister,I know a few on here who have had the same thing going on in there lives Jean lost her brother,I lost my Grandson,so we do understand how you feel,myeloma is hard enough without a death of a loved one.So you are entitled to feel low,we can only off sympathy,and a realisation that we do know how you feel Love Eve
Hi Mike
Well as you know,the patient does not get much choice,it,s either trials or treatment as laid down by NICE and all of this is still a post code lottery, If you are lucky and can find a Haemotologist that has a special interest in Myeloma and also has some perspective about the awful damage and pain it causes,physically and mentally,patients might have a better journey on this roller coaster.
As you said how much do you want to know!!,Well as a carer I can tell you my attitude at this present time,this is with the knowledge that my husband has in my opinion,stage 3 myeloma,after 18 months achieved SCT which we are now waiting on BMB,to see if he has any time without treatment.My opinion is when you start adding extra problems to the above,is well it,s just another thing,All the shocks have been done.
I do not expect to see the man my husband was and he will never ever be the same physically or mentally,but he is still alive and has the will to live, this is the opinion of a carer,I just wish doctors,would take on board the fact,that we are human beings,who in are own way have become the experts on the person we look after.We are not looking at thing through rose coloured glasses,Eve
Hi Amelie
Well i hope John has a good recovery,and starts to feel better,I do not envy you a winter in Denmark,but I suppose as we are use to wet weather you are use to the snow and cold,my husband spent many a winter in Denmark,one of his hobbies,was blowing wholes in the ice and diving,use to be in the Marines!!
I was interested in your comments about Celegene and EU,over in England it is still going through trials,there is some dater being published,but not a lot,if you find out any more,I am interested?.Are there no trials going on in Denmark as I know they are world trials.Europe,s first line of treatment has been Velcade for some time.
I have noticed on here one or two people being given slightly different treatment as there first chemo,and I do not know if its trials or NICE relaxing the rules. Love Eve
Hi Andy
Good luck with the Radiotherapy,
As to the catheter,well the question must be why did they put it in????loss of control or your condition at the time it was put in?????.
There seems to be grey area,s with your low back,chemo works on any form of cells,they know chemo has not worked to reduce your cells,so why have they not given you radiotherapy before now,specially as your condition has put you in the position you have to have a catheter is it because of the site that would need radiotherapy for?.What pain relieve are you on Andy.
Slim had a catheter for awhile,because of condition he was in,I am not a great fan of them,I often wonder is it for the patient,? or less work for the staff???
I wish you well,and hope you manage your goals.Love Eve
Hi Liz and Kev
Congratulations on another granddaughter, Myeloma puts everything into perspective,for all the family. Also you appreciate the event a lot more when you thought you would only have the one grandchild.
I hope you have lots of first ahead as a family,first steps,first school,first boyfriend,and lots more. Love Eve
