tom replied to the topic Starting treatment tomorrow in the forum Treatment 10 years, 7 months ago
Hi Andrea
Well good luck with it I was on CTD in 2009 and had to pack in work half way through my third 28 day cycles as I was wayy too tired by then had about a year off work that let me have my SCT in December 2009, got four years remission out if that. Just take one day at a time it’s a doable but it has it’s moments stay strong and you will…[Read more]
tom replied to the topic My Stem Cell Transplant Journey in the forum Treatment 10 years, 8 months ago
Hi Keith
Yes the Dex keeps me awake but it will only be for last nite and the Velcade (if it’s same as last five lots) and will need aka ram to wake me up.
The mouthwash like David said should be supplied by the hospital and don’t forget use it near as much as you use the loo and some. That extra extra use helped me no end.
Good luck with it…[Read more]
eve replied to the topic Michael Update in the forum General 10 years, 8 months ago
Hi Jean
Good for you,keep in that frame of mind,never give up,it will take you both a long way,.Eve
eve replied to the topic Steroids: effectiveness and side-effects in the forum Treatment 10 years, 8 months ago
Hi Keith
Quick one!!
Get some chlorpromazine tablets from your GP,they stop the hiccups, Eve
tom replied to the topic Start new Regime on Monday 20/01/2014 in the forum Treatment 10 years, 8 months ago
Bloomin half post again but am sure you all get my drift lol xxxx
tom replied to the topic Start new Regime on Monday 20/01/2014 in the forum Treatment 10 years, 8 months ago
Your all more than welcome and you all are my inspiration, it’s not easy comming onto a site like this Mm am sure but for me it helps reading your good posts and we have many on here that are Onwards and upwards who also Vabyte and do whatever it takes and also know that every day is a gift.
So you all keep me going also
tom replied to the topic My Stem Cell Transplant Journey in the forum Treatment 10 years, 8 months ago
Morning Helen
As you can see by the time of the list I had my Dex yesterday lol.
I think you would beat me if ur July but am gonna race you anyways it gives us some thing to look forwards to dunt it.
I would think for me more autumn early winter for mine beds permitting.
Now the race us on
tom replied to the topic My Stem Cell Transplant Journey in the forum Treatment 10 years, 8 months ago
Helen
Do you have an idea when you will be doing yours ? Have you done the harvest? I forget too much these days so forgive me if you told me ha ha.
I am building up to my 2nd transplant all being well this year.
Had first in 2009 so remember what it was like and don’t have a problem doing it again as it gave me four years drug free and that…[Read more]
tom replied to the topic My Stem Cell Transplant Journey in the forum Treatment 10 years, 8 months ago
Hi Keith
And all the best for you, don’t forget use that mouth wash like it is going out of date I did with my first SCT in 2009 and South was not too bad, am due another one this year when the Velcade sorts the Mm out.
One day at a time Keith
Tom onwards and upwards x
tom replied to the topic Start new Regime on Monday 20/01/2014 in the forum Treatment 10 years, 8 months ago
Hi you all
Don’t know where the time has gone ?? Moved home in December (13th) and it’s been all go one way or another.
Anyway my treatment”…… On my third week of my third cycle and all doing well, just feel tired more than I used to but still manage to clock on at work and go out for a pint or three. Sleep like a log now except on my Dex…[Read more]
eve replied to the topic Steroids: effectiveness and side-effects in the forum Treatment 10 years, 8 months ago
Hi Sarah
Well all that is good to know!!!!
The worst thing I can think of that Slim did in the early days of Dex,is he got an idea to put everything behind the wardrobe,and I said no,when I went out I came back to an empty cupboard and it was all behind the wardrobes!!!!!,I do not let Slim drive on any treatment!!! Apart from that argumentative…[Read more]
eve replied to the topic Steroids: effectiveness and side-effects in the forum Treatment 10 years, 8 months ago
Hi Sarah
I cannot help but question the amount given of Dex ????
My husband is on his fourth treatment in three years,each time with Dex,and the days he has taken it are varied,example:he is at present on Velcade one injection a week,he takes 40 ml two days running!!!,when he had two injections a week he had four days of 40 which was changed to…[Read more]
CarolBradley1 replied to the topic Pomalidomide – can we compare results, please? in the forum Treatment 10 years, 8 months ago
Hi Sue
I have just started round 6 sand my opinion has c one down from 13 to 3 – phew! We were getting worried as nothing else seemed to be working for me until pomalidomide was offered.
The side effects are very little now it’s. into my system – in fact, the Dec is far worse!
Hope your ‘pp. comes down SOON
Love Carol xxx x
eve replied to the topic Michael Update in the forum General 10 years, 8 months ago
Hi Jean
After the blip as I call it,it took a very long time to recover,eventually Slim was walking again,he started treatment about two weeks after he came out of hospital,I thought it was to soon,but he coped well,but treatment failed,went on to CDV and then SCT.
Nothing has stopped the Myeloma,no real remission,he started CDR,but had a…[Read more]
eve replied to the topic steriod come down. in the forum Side-effects 10 years, 8 months ago
Hi All
I think once you understand what’s going on it’s easier to take control of,keep yourself busy,telling the cat off is a good one,it cannot answer back,as a carer the one thing that use to annoy me,was my hubby could not see it was the Dex that made him so stubborn and argumentative as time goes on it does get easier. I use to keep a bit of…[Read more]
eve replied to the topic Revlimid continues to work its majic in the forum Treatment 10 years, 8 months ago
Hi Jeff
Glad to see you are feeling better,and being positive all helps your condition.
CDR is very like the CDT treatment you had,as you are slightly older,once they are able to control your PP,they tend to use it as a maintenance drug until it stops working,some people have been on it for a long time,as you know everyone reacts different to…[Read more]
eve replied to the topic Cardiac Amyloidosis in the forum Side-effects 10 years, 8 months ago
Hi Molly
There are a lot of people in the position as your husband,it does depend on how his heart is affected by it. The Royal Free Hospital in London is the only hospital who deals with it,but they liaison with local hospital,it is rare 600 cases a year.
I cannot pretend it not serious and tell you not to worry!!,but please get in touch with…[Read more]
eve replied to the topic My Remission is over!! in the forum General 10 years, 8 months ago
Hi Jo
You must feel that the Damascus Sword is dropping!!,all these new treatments effecting people in different ways!!,I think even the experts are on a big learning curve with us.
Sorry Mandy about taking your post but Jo does not post much for herself,you have to drag the news of her condition out of her,said in a nice way Jo!!!,please post…[Read more]
eve replied to the topic Ian started on Velcade today in the forum Treatment 10 years, 8 months ago
Hi Dick
You take your chances!!! Slim was unfortunate ,as I have said before Slim is one of the 15 percent who is high risk,good results,but it comes back quickly,you seem to be in the same predicament as Andy,!! Cannot get your PP down!!!. Hindsight would be wonderful??
You have a lot going for you Dick, young,fit family plus time,so I think…[Read more]
BADGER replied to the topic My Remission is over!! in the forum General 10 years, 8 months ago
Hi Eve
my kidney score creatinine 500 I was fine all the time I was on velcade as soon as I stopped the kidneys got worse they cannot explain it so they have put in a fistula dialysis access this has gone wrong and narrowed so they put balloons up the vein yesterday venoplasty full of bruises now
Regards to Slim
love Jo