Hi Bev
You would be better introducing yourself as people are more likely to see a new posting,just log in go to Newcomers,then scroll down to bottom right hand corner and it says start discussion !:-)
Any way a warm welcome,Slims consultant tells us PP are not important,but he does have a few problems in this area,I am sure someone will come on,who makes note of there PP.
You do not say what trials have been offered and there are lots out there if its MX1 then I will explain below!!!
As for trials there is a lot to be gained,but with NICE accepting Thalidomide then Velcade and Revilidimide as the three treatments,they are the same as trials but in a different order.
On trials you will be randermised for either CDT or CDR.
My advice is ring Ellen or Maggi there is a free number at top of page,they can explain plus send you information,its hard at first all the medical jargon,but you will get use to it.
It is worth writing questions down,like what sought of myeloma do I have!!!
What stage is it at,some will tell you they do not stage it,the information books Ellen sends will help you know ,how much damage you have.
Any way enough for now,take it one day at a time,and do not let anybody rush you in to making. A decision ,its your life you decide,which way you want to go. Looking forward to hearing from you.Eve
Hi Jean
That's Velcade for you,they say,if your Myeloma has not been reduced by half,the NHS do not have to pay for it!!!!,may be that's why they are taking people off it !!!! Saves money.
Slim had six cycles which took him down to under 5 percent in bones from 80 percent he was able to have a SCT,but even Velcade was considered a failed drug as soon as it stops,the Myeloma was on the rise.
Has Mike had Revilidimide as that now is third option off trials??????
If Mike,s had strokes is he on full Claxane or just a preventive dose of 40m????
If Mike goes on to Revidimide make sure he goes on full dose of Claxane as Slim was on 40m and it did not prevent a thrombotic clot in artery,if he had a full dose might have not had to go through an operation plus using a wheel chair again. It just adds more problems plus hospital visits to the equation .
When he came out,no antibiotic ,so my own GP and myself agreed,he would have them,and his bloods have picked up a little bit, platelets are 37 but WbC and Neuts,have gained,making him feel a little bit better.
Hope Mike stays on Velcade as it gave Slim a better quality of life. Love Eve
Hi Jean
Well here you are a year later,its all over and done with,go ahead and book all those holidays and make sure you enjoy every minute,life is to short to keep looking back:-)
It's a big world out there and Frank and you have been given a second shot at it, so enjoy. Love Eve
Hi Stephen
Welcome ,9 years,remission,and with another SCT may be another 4/5 years remission,and the way things are going a possible break through in controlling this cancer,the odds seem to be in your favour.
There cannot be many people around who new what it was like in 2004?,Slim my husband said he would never go through it again!!,There are people on here who have done it again,Scott is in the process of going in to Kings for second sCT!!!!,They are getting people in and out a lot quicker,!!!!
As a carer I can only say if it buys you exta time it must be worth the discomfort of a few weeks,to have many extra years with your family,I wish my husband had that chance,but he got less than 6 months remission,so he is now on CDR onceits in control,then maintenance. Until it stops working.
Can you actually remember that much about it,!!!!! Eve
Hi Kathy
Welcome,it all comes as such a shock,plus moving back to UK .
May I suggest you start your own post,easy to do,log on,go to newcomers,scroll down to bottom,right hand corner,says start discussion.
The reason I say this,if you start with a heading.living in France,there are other English people on this forum Living in France and may be of some help to you,also your post will be more likely to be seen,than stuck on the end of someone's post.:-)
If I am correct we have a few regulars on here that have connections to Exeter and Somerset.so you should get some reply,s
Good Luck,hope to hear from you soon,and hope the good people on here can be of some help. Eve
David you were saying you walked 4miles,I do not know what pain releave you are on,but for your pp to rise by 0.30 is nothing.
May be its just me questioning things,to me !! I would have to question why,as Velcade was getting PP down,Revidimide is known to cause problems with legs,and this will be your next treatment.
Why not ring Ellen she might be able to give you some sound advice.Eve
Hi David
That must have come as a bit of a shock,did you ask him to explain in more detail,!! Are you starting to suffer with PN,as its not unusual.
I take it you first treatment was CDT,and he has just taken you off Velcade.CDV???
If you are going on Revidimide ,combination CDR it is known to cause DVT plus thrombotic problems,Slims just had a thrombotic clot removed after his foot turned a nice shade of blue and freezing cold,although he was taking Claxane preventive does of 40. ,and that was after 1 cycle,he is now back on Revilidimide combo CDR,with Claxane. Injections of 100m,so it does seem a strange thing for your doctor to do.
I would be asking questions as it limits your drug availability for future use?? Some times it's about the cost of the drugs,I know that after having a course of Revilidimide ,a maintenance of Revilidimide is next step until it stops working,were Velcade is a course with no maintenance after.
Any way all this is food for thought!!! You lock the Myeloma in a cupboard and have a wonderful holiday. Love Eve
Hi Dai
It was nice to be able to put a face to Keith as he never put his picture on!
I find the video ,s of patients a bit off putting and not to real, the reason being they look so well,and I tend to look at Slim,and compare,people might have looked like that at a good stage of the Myeloma,but no matter,who you are,unless you are like Old Tom,you never get that picture of health back!!:-0
I renewed Slims Driving Licence last month,when you compare pictures,there is no comparison ,may be we should all be a bit more honest and post resent photo,s my own photo on here is a photo at 60 years,5 years have taken there toll even on me,but on Slim it looks like 20 years. Love Eve
Hi Carol
Young Tom most properly cannot even lift a teaspoon at the moment,its a tiredness that just takes over the whole of the body,it takes so much out of the patient.
Slim use to just about manage to open his eyes as I walked through the door,sleep all the time I was there,and just when I was creeping out,he would open his eyes again,and I was there from 11am to 6pm,luckly they had very comfy chairs and I had good books to read.
Give him a few more days,its also a very emotional thing as well,its like all your worries,that have you have been keeping inside over flow for the most stupid reason.The mind plays funny tricks on you.
He is in the best possible hands.Eve
Hi
Has Dave got his date for SCT yet!!!
Cannot be long now,worth looking at some of the post on here,from people who posted whilst going through SCT.
My only suggestion is take old clothes with you,as some you might prefere to throw away,also if Dave has a mug he prefere s as hospital crockery is not big on cups.
Let us know how he gets on,I know its a worrying time,but if it works and buys extra time it's worth it.love Eve
Hi Wendy
Being a carer on this roller coaster for 2 1/2 years ,I am beginning to wonder do numbers matter!!!,I am asking this with the knowledge that all Slims numbers are now not considered reliable markers to monitor the Myeloma.
eg: bloods HB 12. WC 1.2. Neuts 1.0. Platelets 57 . Myeloma last BMB 30 percent in bones,no more damage but in pain,may be not Myeloma pain,but related to what Revidimide does to body,????
He had a clot in artery removed,plus a visit to A&E 7 hours with different doctors,and I new they did not know why his leg had swelled and blood under surfes of skin,was it vascular ,DVT or Revidimide reaction,or low platelets,or infection., I had no choice but to take him in just in case of infection ????
Truthfully they do not know,yes the bloods are causing all the problems,but I only have his general health to monitor him:-/
So do numbers matter,??? I do not think they do, as long as you feel ok .
I hope the trials work out for you Wendy,good luck with your race,why worry about tomorrow and spoil today.Love Eve
Hi Karen:-)
That is a long time to wait,!!! I think if there is any thing going on,she will send you a new appointment,cannot see her making you wait until end of August,but if you have a holiday booked take it,lock Myeloma in the cupboard.
Think positive!!! Even if its back,they are catching it early,Slim did not start treatment again straight away,they like it to be above 10 percent plus other things like pain,or kidneys showing signs,I suppose because we have dealt with it not showing in blood for so long,we realise,you have to enjoy today,without the worry of tomorrow:-D
This is we're the roller coaster has so many highs and lows..Love Eve
Hi Karen
I can understand you being worried about it,but even if she has the results she will not tell you by e mail!!!
When Slim had his last one I rang up after a week I told them we did not mind knowing the results over the phone as the previous BMB showed 10 percent in bones,but I was told the interpretation was a complicated procedure and this had not been discussed. We had to wait for the consultant who was off that week to come back,just to tell us it had gone up to 30 percent and treatment would start straight away.we delade treatment to have 10 days in France.
We are learning to say s-d it,specially now Slim is off Trials, We have accepted that with the SCT being consided a failure ,that time is now back in our hands,and we can have a little say,plus choice,how we approach this Revilidimide ,we no longer let treatment control Slims life..
When is your next appointment with consultant!!!!. Love Eve
Hi Georgina
I would take the consultants advice and up the morphine,is he on a Slow release like Oxycodone,also paracetamol. Will enhance the Oxycodone, it takes awhile for the body to get use to these tablets,but if he is not on slow release,he will feel sleepy,slow release is a 12hour drug,so taken at 10 in morning and 10 at night helps.
If you cannot get hold of consultant see your GP. As consultants may not be the best person to help you manage the drugs and your surgery might be better situated with management of pain releave.
Myeloma effects the bones causing stress on Skelton,radiotherapy is either for pain management,or the danger of bones breaking,if you can not get an MRI scan,why not try for an ordinary exRay,which your own doctor can arrange,just in case the bone has been so weakened it might be collapsing.
If its just Myeloma pain the chemo regime,will make the pain easier in time as chemo works.,hope this gives you some help,you could ring the Myeloma help line and speak to Ellen or Maggi,by going direct,you can explain easier about it. Eve
Hi Stuart
I have registered for this,mainly so I could see what,the whole thing was about,not up to date on gadgets like thi :-S
My problem was I had to take Slim to A&E ,getting home at 2am,so missed and forgot all about it.
Now I have regained some strength,can I go into it like a recording,or have I missed the whole thing,!!!!!
If I have will things like this be available again, or will you put on your video s!!!!! eve
