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]

Thanks for your reply, Eve,

The dex waa given last year before M was diagnosed. He had spinal cord compression and it was the first thing the spinal surgeons started him on before his first major surgery. The plasmacytoma that had caused the compression and destruction of a vertebra in his neck wasn’t diagnosed till he was in hospital with the…[Read more]

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]

Hi

I’m like David been on forum since 2006 and I have never heard do it either. If you phone or email Ellen or Maggie, the Myeloma nurses I’m sure they will be able to help you. Details on site.

Best wishes
Jean

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]

Hi,

I have that too! I currently have 20mg Dex on day of velcade and day after, so it’s Fri/ Sat, Mon/Tues for each of the first two weeks. Like you say, for me it’s two days after that the comedown happens: so for me Thursday is just totally a non-day. I feel utterly rubbish and can’t do anything at all. But at least now I know that so I plan…[Read more]

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]

Hi Rebecca
I have attached 3 photos. 1 is clearly Christmas ! 4 months after my SCT, the second is April 8 months post SCT . I had my hair trimmed in the March but only minimally to even out the wispy bits. I had the curls cut off and colour applied in July , 11 months from SCT. Until I looked for the photos today I’d forgotten how long it seemed…[Read more]

Wishing you all the best for your SCT, John.

I hope all goes as well as possible and that you can look beyond it to a time of recovery when there are nice long days and better weather.

Best wishes,

Sarah

Hi Carole
The chemo makes us lose most but not all hair ..as when it gets to a certain stage it becomes dormant or old hair which stays put for 6 months or so I believe, what we lose is just the actively growing hair. I lost about 3/4 of my hair after melphalan and was left with wispy moth eaten looking hair, I cut this very short after about 4…[Read more]

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]

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]

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]

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]

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

Hi Dick

I am sorry to hear your SCT did not work, Helen R and you have both slipped it into someone else,s post!!!!!,I did the same when it happened to Slim,why do we do that??????

I think it,s because we do not want a lot of post saying ( I am sorry ) it’s bad enough going through SCT with nothing to show oft it !!!!,Slim looked on it as 6…[Read more]

Hello John

Just popping in to say hello!!,I hope your are doing ok,or at least as well as can be expected,as you had a rough deal,and no time to adjust.Eve

Hi Jean

That’s all good news,Slim came out in a wheelchair ,I bought a light weight one in the end,which is easier to fold,took months to get him completely on his feet,but he did it, it was the best buy I made as it has been used on and off for the last couple of years.

If you can afford to retire I would go for it,you might miss work but you…[Read more]

Hi Maureen

This time last year,I bet you thought you would never get,were you are now????

How is the Velcade going??? Keep his feet warm,and give his legs and feet a good massage,there legs get very stiff and you can actually feel the tension relaxing in the calfs,so worth it.

Glad you had a nice break in the lakes and also met Andy and Steph,Love Eve