Hi Keith

Well done, that's one down. How many are you expecting?

All best wishes.

Maivs x

Hi Tina

Very interested to hear you are on the Trial. Can't remember, did you have a SCT?

Sorry you have got this annoying itchy side effect! Hope the alternative treatment works for you. I wish you a long and event free remission.

All best wishes.

Mavis x

Hi Jenny

Sorry you are feeling so crap at the moment. Sorry I don't have any experience of your particular regime, but wanted to send good wishes. I'm sure that someone will come along with some sensible advice, but do let your medical team know how low you are feeling so they can help.

Very best wishes.

Mavis

Hi Susan

So sorry that you have been diagnosed with MM, but welcome to the Discussion Group, we aren't a bad lot! I find it very helpful.

I finished six rounds of CDT on October and responded very well and am currently in full remission. I just had two Thalidomide tablets each night. I had always decided not to go down the route of SCT…[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]

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

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 Sarah Jane

Good luck with trying to get your blood results. I try to use the Diary, but I seem to have considerable difficulty getting mine. Not helped by the fact that results of PP levels seem to take a fortnight so are never available at Consultations. Am often promised a letter or phone call, but they don't come!

Other results to…[Read more]

Hi Daniel

So sorry your Dad has relapsed. I can understand how worrying this is for you and difficult for you to cope with. I can see why you are asking "how long", but as otheres has said, it is just not possible to say. From what I have seen, not even Consultants can be certain until the very last weeks. Things are so much better and…[Read more]

Hi Deb

I too sm sorry to have to welcome you to the MM Club! Sorry you have got it so young. I am nearly 68yrs!

As others have said, if there ever was a time to have MM, now is the best. There is so much expermentation going on, and, also so many new drugs available.

Very best wishes for the decisions being made for your treatment.…[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]