Hi Edo
Well where do I start, Im pleased you found your way to the discussion forum and sorry to hear about your Dad, sounds like he is a tough old man, who is going through the mill right now. Velcade dex and Thalidomide are a real toxic combination and I am not surprised he is tired.
I have no advise to offer on rectal bleeding other than my…[Read more]

Having read all those poems and understood them as being me!
I realize must get a grip with the one desire in my life.
For years I have wanted a pair of 'in line skates' every time I see them I want them, but my age has prevented me either buying them (not to mention the fear of a broken ankle) or telling anyone that that is what I want
But…[Read more]

What a bi**h Keith,
Dont you just love the powers that be. Lobby your MP, what have you got to lose. Get your fighting spirit going, Do it on a Dex day and get rid of all the anger the dex brings.
Im a newly liberated from work woman and sort of missing it already. Working in the law you are tied to regulations that dont make sense.
Min

Pleased to hear from you Roz.
One day at a time, get thru today and tomorrow will come.
Non of us know what tomorrow will bring and its just as well.
Best Wishes
Min

Hi Andy,and welcome to the mm club,
This is such an individual disease that the advise has to be there is not a one size fits all answer. My husband had an sct which technically is classed as a failure as he relapsed within 5 months. But that is not to say I would not recommend it. He went for an 'early one' and one wonders if he had waited until…[Read more]

Hi Bridget
Im back to earth with the washing and shopping etc.
When Peter finished his 1st course, his neutrophils were low so the Dr gave him a lower dose rather than take him off it.
He has now had 5 days with no swollen ankles ( think now I know more that in fact this is due to the zometa)
Who am I to know but hopefully its the…[Read more]

Hi Clarabell,
From experience of my husband having the same treatment I think that you will find your dad is going to be 'measured up' so to speak. For that you don't need to attend.
They will look at the scans and mark his body with a sort of 'tattoo (it washes away in time)
He will be given a further appointment where they will use the tattoo…[Read more]

Jet
He had very good blood results, no sickness, no mouth problems, and we only lived 20minutes away from the hospital.
You stay in hospital because, if you have problems they need to ensure that they respond quickly to high temperatures infections etc. But often being in hospital means you can catch hospital acquired infections. Not least of…[Read more]

My husband has myeloma, and his mother had myeloma.
His mother died before he was diagnosed.
I know what I think. and given the fact that this is a rare cancer how rare does it then become for mother/ son to suffer the same.
Both my children have pondered this problem and decided they don't want to find out after talking to their…[Read more]

My husband took curcumin as advised by an asian friend following his stem cell transplant. The same friend recommended a tv channel with yoga to follow. He said that people from his country rarely suffer from MM. He did strong exercises instead to get back his lost muscle tone.
Within 5 months he relapsed.
I have never been sure if this was…[Read more]

Hi Eve at the outset of his diagnosis Peter was on a similar quantity of tablets, due to chronic kidney failure, actually called nephrotic syndrome. In addition to all that he had had a heart bypass when he was 52 due to a congenital defect. The massive doses of morphine too for the crushed vertebrae meant he had to have two pill boxes and I had…[Read more]

Hi Ladies,
I was getting a little worried about you Gaye when you went quiet for a while. I hope your getting on well with your exciting new drug. How is your back pain now?
How is the puppy Gill.
Cant add anything to your bra adventures but I would like to dispose of mine and sure will once I finish work. But I wish I could find a liberty…[Read more]

Wonderful news Nikki
I recall the dark days you had at the outset of this 'journey' and I am so pleased with the positive outcome for you both.
Now, get on with the rest of your lives and enjoy. Good Luck for the future.
MIn

Thanks for that David,
I am going to a Myeloma info day this Saturday, if the opportunity presents itself I will ask why everyone does not get the same follow up treatment after SCT.
Peter got nothing other than Aciclavor if my memory serves me right. It seems like a lifetime ago and it was only last May!
Can I have a straw poll and find out…[Read more]

Hi Gill,
Like Steven my husband looked awful when on velcade, I would describe him as grey in pallor, he was tired but the frequency of the dex kept him going. He is far more tired on Revlamid, has some bad days but generally looks well and healthy.
Peter was so ill and his blood counts so low on velcade that he was allowed to miss one…[Read more]

Hi Chris
The rehydration salts were diarolite or boots own brand of them, Use twice as much water as recommended. Don't use them too frequently or often. But Peter was on 60 mg of frusamide twice daily
I was told by a friend that tins of 7up (lemonade) had all the salts you need for rehydration You can also make your own with 1 ltr…[Read more]

Hi
Pain is something that no one should have to suffer. My husband used to go to see his consultant and never remember to tell them about the pains. there was so much else going on and blood always overtook the conversation. then we would get home and I would have to listen to him complaining about the pain.
He was on 160 mg of slow release…[Read more]

Yes keith he said words to the effect that they had been told not to do so many as often as they are expensive tests;
they used to go away to birmingham but then they got a machine and did them only on Mondays, Presumably the person trained to use it only works on Mondays. I think its difficult to complain given the price of the drugs but…[Read more]