Hi
I have the same problem with expensive wine, I tend to drink the bottle instead of savouring it any wine snob would say I DESECRATED It
leaving TED
Hi Everyone
Slim does have a few marks on his tummy with needles,,he has to pinch the flesh as not much there to put needle into,I do not think I could do it day after day.Over six months now have been told that,s the least he would be on them,specially now he is on Velcade and the damage to his lungs although cat scan showed his lungs have improved.
Its his chemo brain that worries me,and frustrates him.
As for being awake,I go through days like this,then I sleep for a full 8 hours every few day,I just wish I could settle to read a book,usually I am a prolific reader,but for pleasure that,s gone out of the window.
Slims just made me a cup of tea,so I will say good morning.Eve
Hi Sharon
Its now November when do you have PET scan and results.
Slim had bmb expect results in next 10 days 1/2 way mark for Slim.
Eve
Hi Gina
how is it going have you managed to get your mum home.
just wondering how you are getting on. love Eve
Hi David
its just so nice to hear from a person who has gone through the mm journey,and come out the other side and has got his life back.
A big welcome to the site and I do hope you continue to post.
As you say everyone is different and some people have a longer and harder journey,which in its self creates more problems.
I have found this site such a help and wonder how people manage with every day things that MM creates, without any help,but as you know everyone is different.
Eve
hi Sue
You want to waffle go ahead,it does you good sometimes and helps when things go wrong,this site makes you realise how so many hospitals are different concerning treatment.
Slim is on Myeloma X1 trials ,so we do have to stick to a certain treatment,but who every devised how it was to be taken never considered the patient.
EG:VELCADE DAY 1
Velcade given at 3 oclock some time tablets do not come up till 4 o clock.
He has to take 10 cyclophosmahide have nothing to eat for 3 hrs before hand and not take hid dex before the one hour after.
VELCADE 4 o clock
CYCLOPHSMAHIDE taken staight away usually around 4 or 5
DEX i hr later at 6 o clock
and guess what he walks the floor all night!!!!!!
This is day one of treatment and cannot be changed.
Now tell me what mad scientist devised that!!!!!!
So now I have had my Waffle and feel better for it. Eve
Hi Bridget and Helen
Defo late birds,was like that myself afew months ago, working hard to try to make sure I am not still buzzing in the early hours.:-/
Slim has been injecting himself for over 6 months now,no bruising but area less pliable,chose to do it himself as scared I would use him like a dart board:-P
To be honest I would be able to inject Slim,but if it was me I would be the biggest coward going,so Bridget I think you should be awarded a gold star.:-)
have been wondering why you had not posted love Eve
Hi Sue
just to tell you about point 2 of your questions?
Slim has Velcade twice a week dose has always been 2.3
We had appointments at 9 for bloods and 1 o clock for Velcade.
leaving at 8 in morning bloods taken then stayed in city,went back for Velcade by 3 o clock often no velcade getting treatment at 4.30,if we are lucky home by 6.We watched staff come to work and leave again in evening!!!!
Why why can they not organise them selves,in stead we organised our selves'we now go in for bloods the day before beginning of next cycle,this means Velcade and tablets can be done 24 hrs before.the rest of the time we go for bloods at 9,then go home and travel back for 3 or 4 oclock,round trip of 60 miles and a lot of petrol,but Slim is able to rest.
The problem seems to be that the departments do not co-operate and work as a team,so the patient suffers and the nurses waste time phoning to see why drugs are not ready for patients appointment.very inadequate.
I do not know the distance you travel or how long after bloods you wait for treatment,our longest wait before we organised our selves was arrived 9 for bloods,and left just before 6 in the evening,plus add on 1 hour each way for travelling and parking.
After turning up on date requested for BMB on Monday,told mistake they do not do them on Monday,turned up Tuesday had BMB,but in the conversation about appointments to see consultant ,was told we should have a person organizing us,told her we would not hold our breath waiting. we do find it laughable.
As to MRI purely money
They have a dictated regime to follow with chemo,and I am sure many consultants would like to vary and try different chemo to suit how advanced the mm is,but often there hands are tied.cdt is 1 line,Velcade is 2nd line.
I would agree with you,we have to give the consultants more power to choose which drugs would be best for different MM or drugs that could be more effective to people with advanced MM,some have nothing to loose.
This is why I am all for trials although on myeloma x1 trials my husband was randomised for CTD.
I hope this gives you some insight .Eve
Hi David
I know you are in remission,was it the same through treatment!!
I agree completely with you, in terms of getting results,and agree,you can almost see the reactions on the professionals faces(patients who think they know best).
I feel they have failed to keep up with the times,I do accept many people do not want to know!!! fair enough but why should people who want to know have to conform!!
We might seem quite ignorant,when the Myeloma World hits our lives,but a year down the line,with modern technology and the desperate need to find answers,we often realise that mistakes have been made on the way.
My mantra his test his body his life,but at the end my husband.
I do feel you have to start at the beginning,because it starts with blood and urine test at the GP,how many people are getting treated for cracked vertebrae and Osteopena with a general blood test which will not show some MM.So patient is treated with massive Calcium and pain killers,taking months to be diagnosed,its all about money for test.This can be solved by having a standard test,(Not if this test shows nothing come back next month and we will do another test and work are way down the list)it,s often to late,and the damage to the bones ,kidneys is present.
I have said to Dai to use what info seems help full,this is just my view as a carer,and I do understand lots of people have different experience and out look to myself.Love Eve
Hi David
I have no problem getting blood results I ask for them at the beginning of each cycle the nurses print them off,and I can see straight away if there are any problems.I find the chemo nurses are willing to expain anything I do not understand,and since Slim has been on Velcade take more of an active roll,concerning his general health,which did not happen on CTD.
It is the bloods,urine,bone marrow,that are sent away to,Leeds London and Birmingham for trials,most patients never see these results,I have some copies,received on asking for them,nothing since the end of July although I repeatedly asked for them,they have explained the kappa light chain results are no longer viably,and we wait for BMB.
Everybody want a cure for Myeloma,and the way forward Is trials and results through labs.We know there is no cure,only remission as David said not in our lifetime some people have an extra 20 years some very little time.
To get it diagnosed sooner,the gp has to have a better knowledge of MM but to have a guide line for test,as you know Dai from your doctor in Wales
If they have a procedure to follow in surgeries and in hospitals that is set in stone,patients would not feel left out,I can only speak for what MYELOMA UK,has done for me,the booklets given at hospital,the help line,this forum,all have been a life line as a carer.
I think Dai it might be worth getting in touch with Ellen to see,what patients ,questions are put to her
Last but not least in to days modern technology,why are results still taking,the same length of time to be given to the patient as 20 years ago.
I asked could we be given the results on the phone or may be they could e mail them,it would give us time to consider options,be calm for consultants meeting,and by then we would be composed and know what questions to ask,
It does seem very strange that more people know about my husbands health and condition,than he does himself
I think they call it the Data Protection Act. LOL>:-( 😛
Hi Everyone
how about a small one but still important RICHER
For having loved and lived giving HER,ans I am not talking about money.Eve
Hi Jim
What is going on!!!!has something happened ,have you all these e mails on your computer,going into trash can,or are you to ill to reply.
Hope it,s just the trash can eating them up rather than the latter.LOL Eve
Hi Min
It all comes down to lack of knowledge and when you get conflicting answers from the professionals, it does make you question everything around you.
I know what your saying Min as when he was first admitted they took bone marrow,full body xrays and MRI and result confirmed and talking about Myeloma trials within days.
I do not have the knowledge to know how they measure the % of Meloma in bones,the first time they never gave me a % second time told it had gone up to 80% in bones after 6 cycles of CTD,asked what it was before told me he did not have figures in front of him,but the file was there and a computer was on the desk!!!!
Finished 4 cycle and after 12 weeks still do not know if Velcade is working until bone marrow results come.I do find it hard to believe that there no other way of knowing what is going on,and if Velcade is working,I have questioned every body and they all say the same,and I do not have that knowledge ,Sharon on here has the same problem as Slim,she has PET scan too show any activity,they tell me it will not work in Slims case.
If any of you professionals are reading this I would be grateful of a little knowledge!!!!
Hi Jo
How are you doing,thought you might post to let us know about info day.Did it go well. Love Eve
Hi Tom
I believe what ever works for you as an individual:-)that,s what is most important you are the person living with it,and it seem to work very well for you,all ways cheerful,never worry unless the doctor is not smiling,were would we be if we did not have people like you Tom on this forum.
So consider yourself an asset. Love Eve
