[eveParticipant]

Hi Min
I can just see Daisy telling everyone about you wetting yourself,LOL,You made my day,
The dogs will get you out of the bed in the mornings,just take it a day at a time.Love Eve

[eveParticipant]

Hi Clare
You must be worried after 6 courses of CTD then a rise in light chains,best to ring hospital tell them your worries,you will be able to see your dads consultant early.

Slim had 6 cycles of CTD seems to be on path for remission,when they took bone marrow found MM had gone up,but light chains were down:-S,left us shocked,spoke to nurse who arranged for us to see consultant out of clinic time,rather than wait wondering what was going to happen,the problem seems to be they have meetings on Friday Afternoon were they decide what comes next,so we were left in limbo for a few days.

Do not loose heart it might be just a blip,if not there are other forms of chemo,Slims now on Velcade now,and again we are in limbo as,he is not having his marrow taken again until after 4 cycle.
So it is a bit wait and see,as,MM no longer gives true reading in light chains.Not a nice position to be in,after knowing light chain readings every month.

I am getting more like Bridget if Slim feels well,that to me is a good sign so keep you chin up.Love Eve

[eveParticipant]

Hi Jo
Well come on tell us,did he wine and dine you!!:-)
As much as i love Slim he cannot even remember my birthday with out my daughters telling him,so not holding much hope for first wedding aniversery.

Saying that he did buy me a bunch of flowers twice in thirty years not bad,and not from a garage forecourt,sainsbury,s more up market LOL

He makes me laugh though ,love Eve

[eveParticipant]

Well said Mavis I agree,Eve

[eveParticipant]

Hi Roz
Sorry if i got it wrong,I know how hard it can be to live alone,specially at weekends,the door shuts on friday and thats it till Monday .
I am not very good at explaining myself,I myself have my own isolation,because I am deaf,I am suppose to were hearing aids,but I hate them,so it,s not so much physical as mental isolation that I was talking about.:-(
I isolate myself with out realising it,simply things like refusing an invitation because,i do not think I will hear,because lots of people will be there,( just an example):-)
What I am trying to say and not making a good job of it,is your Roz first.Does that make sense to you,
I would hate it if anybody put a deaf label on me,being deaf some people treat me as if I am stupid,I am sure you know what I am talking about,(talking to the wheelchair and not the person)its much the same for me only in a different situation,very hard for people to have someone staring at them and lip reading.8-)
Anyway enough of me,how are you feeling today,hope you have been using your lovely garden,that garden needs someone enjoying a G&T in it watching the sun go down,Love Eve

[eveParticipant]

HI Etta
Mind blowing,but do not worry you are not alone,Slim my husband did 6 cycles of ctd and there are lots more people on this site just like you.
Love Eve

[eveParticipant]

Hi Gill
No not that good looking LOL:-P
Tried reducing pictures but not having much luck,eldest daughter tried,she could not do it.
But at least i have managed to get a photo up,no way am I going to put one up of me that close up LOL,its bad enough looking in the mirror.:-D
Love Eve

[eveParticipant]

Hi Dai
here,s to today a new day,and Velcade 7,good luck.
Love Eve

[eveParticipant]

Hi Mike
In full agreement with you,think its very important for MM people with no siblings,but were do you start,even I do not know the basic and I try to keep myself well informed.
So the people without MM it must not even cross there minds.
Would take Myeloma UK to start information on this one.Regard Eve

[eveParticipant]

Hi David
Wonderful news,I hope you have a couple of holidays planned,and enjoy this new found freedom,no visit to hospital until end of year that in it,s self would have me dancing . love Eve

[eveParticipant]

Hi Etta
Welcome to the site,and to your journey,one that no one wants to be on,but we are,Yes it is all a bit mind blowing,so much to take in and learn it will get easier as time goes on,treat it like a big learn ing curve, any questions ask away,

You do not say what chemo you are on,and it can effect you!!
You should have some sickness pills in your pack,these do help,
Also Zometa can have effect on you but usually does not last long
My advice is if your are worried you should have a 24 hr help line make use of it,they can reassure you,Its just a call ,better save than sorry you just might have a reaction to any one of the drugs you take.
Ellen the nurse can answer your questions but I think they are 9 to5.so the number you have someone should be on call to answer your questions,
Hope this is of some help.Eve

[eveParticipant]

Hi Terry
All the chemo differ in how you take it right across the country except if you are a part of a trial,Slim is on Myeloma M1 trials.So it is closely monited and you basically cannot divert treatment.so now on CVD.

Peter had a course of Velcade and then 3 years remission and still going strong.
Slim is doing full 8cycles as light chain readings show remission but Myeloma had gone up to 80% in bones only way to tell if Velcade is working is sample of bone marrow,!!
When Peter posted,it gave us a lift,as Peter is 3 years without any treatment,it is a big boost for us:-)

Hope this is helpful to you.Eve

[eveParticipant]

Hi Roz
I have only just seen this post,and as you know I am not in your position,so in truth cannot begin to understand,loosing my partner through death,although i do know that this will happen in the future.:-( I always thought it was that I would go first.because Slim until now was the healthy one with good genes,just shows how wrong one can be.

Your memory will always be there of Michael nothing is ever going to change that,but they belong to you,:-)As you move forward with your life you will take them with you ,and Michael would want that for you,If it had been you who died,would you not want Michael to live his life to the full?
I often think life is a gift,and should be lived to the full,so many times,when the last thing I feel like doing(because I feel down)is going out with a smile on my face,I do.Myeloma gets chucked into the bin,out I go with friends,Slim wants it that way,just because he cannot enjoy outing,his attitude is go and enjoy yourself.

I think it would be wrong to isolate yourself,there is a place for you here
as Roz not as a widow. My thought and love are with you.Eve

[eveParticipant]

Hi min
Who,s ears?if big Slims if small mine,having trouble reducing size of photo,tried putting one of Slim and me on,so thats the ears and fence LOL,my dog is better looking.Love Eve

[eveParticipant]

Hi Terry
First may i give you a welcome to this site,I am a carer to my husband but you will find lots of different people on here who can give you advice and boost you up when you need it.
I can only tell you about Velcade but others on here have been on a journey with similar problems,
may I say Velcade is not the last resort,My husband was put on it after CTD as his response was not as good as expected.Velcade is an injection which can vary in quantity my husband has 2.3ml plus cyclo and dex.based 2weeks on 1 week off.all though some people have lots of side effects my husband has minimum side effects.It is the second line of chemo.
He is doing well on this,but we will not know if its working until he has bone marrow taken as in his case it is the only way to measure if the MM has reduced in bone marrow.
If you go into the library on this site there is a leaflet on Velcade:-)

It is just like any other chemo,it works for some,if you read Dai,s progress on Velcade it might help also aPeter who has just joined the site had a course of Velcade and has been clear for 3 years so it does differ.
So keep strong there are other people on this journey with you,Eve

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