Hi |Tom
The school of thoughts with consultants is you should not,look at staging as the one and only aspect of myeloma ,as far as I know,staging tells you not only about bloods and urine,but the extent it has damaged the bones.
Everyone is aware the early cancer is caught the better the chance of curing it,but Myeloma is not curable.

Once…[Read more]

Hi Wendy and Ozzy

Sorry to hear you have both relasped there is not much one can say you must both be devastated,I can tell you Velcade is a good drug and seems to be having a good effect on the Myeloma,Slim got on better with the Velcade than CDT,he had 6 cycles straight after CDT,because they found the myeloma had gone up to 80% in bone…[Read more]

Hi Susan

Sorry to hear you have Myeloma,but welcome to the club,it is very mind blowing when they tell you!!!,i cried when our own doctor told us,my thoughts were how do you control a cancer that goes all round the body in a blood supply.I had a lot to learn,and i have to say it takes awhile to take it all in.

My husband is on the Myeloma X1…[Read more]

Hi

It is so nice to see such positive reply,s to Mari.No matter how many people tell you there is light at the end of the tunnel,you find it hard to believe until you can see it for yourself plus we all know how this illness can change to become a fight for your life.no matter how old your children are,you still worry how things will turn…[Read more]

Hi

I can only tell you about my hubby,admitted with AKF,but kidney function improved,after a few blips,pneumonia which left him with wholes in his lungs plus blood clots,resulting in injections for 8 months, finally,referred to Kings for SCT.

Had SCT,but a reduced dose of chemo,enough to do the job,it worked SCT successful .
He had 2…[Read more]

Hi Rob

Do not worry. About the tube it is the least of your worries,one would have been fitted later for SCT it actually makes your life a lot easier,on normal treatment they go in to veins every time often they collapse,some like my husband it takes a number of tries,so a centreline sounds much better.

If you are looking at all…[Read more]

A huge Welcome Home from me Gill x

Hi liz

Now Slims in remission and off treatment,I find I am posting less,but I like to keep up with what is going on also if you have not looked at the site for awhile you do loose track of what is happening to people,plus all these new people coming on,if they felt anything like
I felt when Slim was first diagnosed,they need lots of boosting…[Read more]

Hi Rob

Just to welcome you to the site and wish you well on your MM journey.

Wi th you being based in London you will have some of the best experts and treatments available ,we are Kent ,but my husband went to Kings for his SCT,also to. Have a choice of trails,my husband did MyelomaX1 trials,CTD randermised,which did not work,so straight on…[Read more]

Hi Everyone

Well we made it,and when I learn how to put pictures on here,you might see some.

Has taken a fair time to get over the flight home,at the moment Slim is doing better than me,he,s waiting on consultant for the ok,it's a bit of a worry every 2months wondering if its all ok,as Slim is one of these people that it no longer shows…[Read more]

Hi Maureen

My husband did 6 cycles after CTD failed for him,tolerated it very well,went on to SCT and is now in remission .hope every thing goes well with your husband.

Time soon passes,the worst thing was having to go to the hospital bloods in the morning then home and back again twice a week,use to look forward to the week off.Eve

Hi Sue I am so pleased that you are both getting some help at last your Mac nurse sounds wonderful.

It is good that you may be able to take a break from work. With Michaels DLA allowance and you not working for a while it may give you a chance to see if you could manage on semi retirement money and Michael's benefits.

I retired at 59…[Read more]

Has anybody heard from Sue? I have been thinking of her and wondered how Michael is Gill xx

Hi Sue

How are you,??? Just to let you know,we are thinking about you,do not worry if you cannot reply,everyone understands.Love Eve

Hi Tina

Would agree with Tom,you have along way to go,Slim has the same problem,try sucking sweets helps with moisture ,Slim is getting a bit better,but sometimes he goes to speak,and because his mouth is so dry,he does not make sense.Always carries drinks with him no matter were we go.Eve

Hi Jo

How are things going??? The Velcade is not so bad,just all the hospital visits !!!

Hope you are managing to get out and about,and results going in the right direction Love Eve

Hi Lesley

It is very frightening

when you get that final answer,but we felt after months of not knowing what my husband had a sense of at least we know now,although I did burst in to tears at the doctors surgery anger was the next feeling why did the doctor not listen to me when I told him how ill Slim was,it took another doctor in the…[Read more]

Hi Steve

When are you taking the Dex,should be early in the morning as possible,it did make Slim argumentative,so certain he was right,plus became anxious at my driving luckly he did realise it was the Dex,It gave him a good appetite for a few days,so that was good.
The bad thing about it,is it mask infections,so you have to be careful and…[Read more]

Hi Wendy

Nearly missed your post!!! It would be easy to say not to worry,but after enjoying so much freedom from MM,it must be very depressing to think you have to start treatment,lets just hope it's a bit of a blip,if you start preparing yourself for it,it will be like livening on a roller coaster,Slim takes the attitude if you cannot change…[Read more]

Hi Daniel

You have come to a good place for information,and you and your dad can be assued people will give you all the help and support they can.

Please get it out of you mind how long,!!! It sounds bad but there is so much treatment these days,as you know it is treatable but alas no cure,it buys time,your dad had a good response first…[Read more]