[eveParticipant]

Hi Paul
My husband is on the MX1 trials,he got CDT side,6 cycles intensive pathway,some advice I can give you,is high dose DEX does disguise any infections,low blood pressure was the start of Slims,not even picked up in A&E,so do take care.Septic pneumonia has cost him the chance of going for SCT.
Now on Velcade as no bench markers to judge how mm going as increased in bones,so will have bone marrow taken as marker.
Hope every thing goes well for you,being on the trials does mean,although you have to give more blood,urine and bone marrow,it does help,as in Slims case,were his MM only shows in bone marrow.
Good luck Eve

[eveParticipant]

Hi Jo
Thanks for the information,will ring and find out how late I can book it,and check about parking.If problems with parking Slim will not be able to come,as he cannot walk or stand for any length of time.
Also not sure how he will be,1 week of 4 cycle,has hospital on Friday,I might go on my own,It is easier to go by train then tube,but there is no way Slim can do that.:-(
Also do not like leaving him on his own.

Its lovely to here you are doing so well Jo,and having great holidays,I feel I just want a bit of my old life back even if it,s only a week,cannot get Slim to stay in hotel,so no holiday for us!!.Thinks he can do it in Van,So clash of opinions!!:-P

Anyway Jo you just might see me there if everything works out love Eve

[eveParticipant]

Hi Dai
4.21 am,and your creative demons,are all around you,to be able to express living and death in such a powerful way is a wonderful gift ,I think you have expressed my thoughts on life ,but put it in a nicer way than I can:-)
May be they are not demons but angels,your not ready to jump on the cloud yet.

When I read this my thoughts turned to the people that have just lost loved ones,i hope it gives them some comfort,:-)

I love it.Eve

[eveParticipant]

Hi Everyone

How about HENCEFORTH A word not spoken very much but used a lot in letters.

RTH
Eve

[eveParticipant]

Hi Gill
Just to wish you and Stephen good luck,hope every thing goes to plan,and you can have a bit of a rest soon,have noticed you are another one,who burns the midnight oil,terrible when sleep will just not come:-(
The rugby has taken over from the post on here a little bit,I enjoy the solitude of the early hours,If I want to feel a bit sorry for myself it,s usually in the early hrs,but with Slim being on Velcade he cannot sleep,so no solitude time for me,I sound so ungrateful don,t I!!
Can you remember when you had small children,and you could not even go to the loo on your own,that,s what it feels like even the dog is at it following me about,!!!:-S
Any way as I say,a big good luck,France beckons!!I think you will be getting there before me, love Eve

[eveParticipant]

Hi Gina
Glad you and your sister enjoyed the info day:-)It helps i think when you meet people who have been living with MM a log time,it gives you a lot of hope,and on bad days,you can think its just a slight hiccup,and tomorrow will be better;-)
My nearest info day will be London next year,and nearest support group is over 60 miles away, that,s why i find this site so helpful.
Slims picked up after a bad few days,came back from hosp,with more tablets,lot of illness around at the moment,so keeping him away from grandkids:-(
How is your mum doing?,hope she is feeling more up beat.Eve

[eveParticipant]

Hi Alexis
My name is Eve welcome to the club,i never introduced myself officially,just,joined in,Then some one put on a thread"Who the Heck are you" think you will find it in Off Topic just scroll down.I came out on that no reason it cannot be updated on.:-)
So good luck,By the way i am a carer to my husband, keep posting Eve

[eveParticipant]

Hi Ivan
It does depend on what type of Myeloma you have and how much bone damage and tumours,plus lesions.some are more aggressive than others.
This is such an individual decease you cannot go on anybodies bench makers.
Did you ask why they had taken you off CDT and put you on Velcade after just a few cycles???? You would normally do at least 4 cycles unless you are having massive side effects,CDT is first front line drug as Velcade is 2 line drug????
Saying all that it does sound very positive so you must be very pleased,it does sound very positive.Eve

[eveParticipant]

Hi Ailleen
Welcome to the site,i have been on here since February,and must admit in the bad times could not have managed with out it.:-(
As David says some one is always ahead of you on this journey,I am a carer to my husband,It does take a little bit of time to take in,but my attitude is i want to know everything about this MM,
So do not hesitate to use this site for any info you need,and welcome to the journey no one wants to make.!!:-P
Regards Eve

[eveParticipant]

hi Ivan
Worth checking out,blood clots one of the side effects,pity about CDT,Slims on 2 cycle of Velcade,no big side effects(touch wood).
It might seem very small ,(like a sore leg) but do get things checked out.
will not have blood clots in future with Clexane surprised you were on such a low does,you look a big man from photo,goes on weight how much you have,don,t worry about bruising,part and parcel of treatment.
Hope you are still feeling positive,are you back at work?? Eve

[eveParticipant]

Hi Nettie
Got to say you have got some guts!!!.but understand were you are coming from,My money will be on its way to you as soon as i work out how to do it,will put it on my facebook,people seem to find it an easy way to give.
My son in law just done the three peak challenge in 24hr.in shocking conditions,the group raised 7000 for childrens respite.
It makes you think if everyone did without one christmas present,and donated it to charities how much could be collected!!
My heart will be with you,but my body won,t petrified of height.
Love Eve

[eveParticipant]

Hi Ted
Must admit never heard of phone appointment !!!. We can ring after 1pm for app.now have a doctor just for extra app and surgery has very early app and late app at 7am and up to 7pm twice a week.
it is getting past the reception desk is the big thing,for eg: my husband has injections which he does himself,my doctors do not like having to supply them,,so theres the receptionist telling me in front of people,that they will not supply them,told here thanks I like everyone knowing my business:-( ,after hospital rang them up,no problem,It,s the cost £15 a day,but in the grand sceme of thing peanuts,he has them for blood clots in lungs after pneumonia
Ted I think the doctor ref to bucket leaking,he means how much gets into blood stream,while contained no treatment,damage comes when cells are high in blood!!it takes calcium from the bones into blood stream,thats when kidney,s can be effected,some times that is the first outward sign,called hypercalcemia (spelling?)feeling sick and vomiting.AKF
hope that,s some help,Eve

[eveParticipant]

Hi Gill and Bridget,
Gill all that sea air was doing Stephen some good LOL
Talking about the h-e-l-l word,how can they consider it inappropriate !!!!!
Taken a second look at the carpet and walls urghhhhh,bought him a bucket with lid he can carry round .
Bridget good to hear you are in good spirit, or as are tom would say Onward and Upward:-)
love Eve

[eveParticipant]

Hi bridget
just caught you post before i closed down,i must tell you what went on today,
Went to hospital today,should have gone yesterday,Slim not well,but hung on till last minute,did not matter he painted the white carpet with sick,thats never ever going to come out.:-/
Saw doctor,"o yes his eyes said,no you think you have an infection,I KNOW BEST I AM A DOCTOR,completly not interested,Asked could we come back for results later as we had a funeral to go to!!! more funerals than weddings these days:-P
3hours later same doctor,with big smile on his face,only different attitude
could not do enough,I think he looked at Slims old exrays. LOL
Any way he is on the mend again,that,s the main thing!!! love eve

[eveParticipant]

Hi Bridget
How are you doing,!! I know by your post,you seem cheerful,its what I call a happy face:-).is the pain starting to get under control,that,s the main thing,Day by day Bridget,you have so much going for you.Keep smiling Eve

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