This is truly devastating. Good luck. The Velcade certainly seems to be working for me – but I seem to be one of the lucky ones.

Que bugerra

N

I'm fine, that's what's so amazing, I feel dreadful for 36 hours and then bing its all over and I can get on with life again. Yesterday (Sunday) I could hardly walk to the toilet, today I cycled 37km at 25km/h (average, hitting 50km/h and doing 35 a lot of the time). It doesn't stop the side effect being really disruptive (everything gets stopped…[Read more]

Hi, I'm sorry its rough. I spent nearly all morning sleeping having done the school run and having picked up my 12 year old daughter from school as she was 'feeling unwell' – I felt very shabby – rambling into her school unshaven and wobbly. Strange dreams, very vivid, of people I haven't seen for 25 years. Anyway, I'm now up an 'better', so I'm…[Read more]

Wow! I couldn't have done any of that today, and I'm afraid I make it clear to everyone that I can't be expected to do anything or cope or be strong! I just fold like a house of cards. Tomorrow will be better.

Sounds like dexamethasone to me! :'-(

Oh I know. Just try explaining that to the family! They have a hard time following the variations.

I would have it checked. I was diagnosed following months of Side pain that always seemed to be moving around. In the end I noticed I had a 'broken' rib and got diagnosed. So it could be MM related. My paIn felt very muscular, it wasn't.

Hi Gill, my pp level before treatment was 6 (I am day 24 of ctd). Just 6 weeks previous to that, it was 2 and this was classed as 'very low'. At that stage, I was still being investigated for what was thought to be a common kidney problem and a pp level of 2 was not suspicious. I have amyloidosis, a complication of myeloma, and I understand that…[Read more]

Huhm, so the consultant says the Shingles wont come back when they've gone away? Ok, but if I've understood what they're doing with me, its a general prophylaxis and they started it at the start of treatment and will stop it when the treatment is over, and that suits me. I'm glad she's active and building on her healthiness.

I think that because the harvesting is basically straightforward and auto transplants are so much safer and simpler to live with they only use allo if they must. Also the medication is pretty good so the transplant is not a life saver.

Do try and verify that she is not being treated because the disease is inactive. Age is only a guide. I was talking to a 72 yr old man yesterday in the dayward who had had a sct last year as it's a question of physical status and he is well and fit (he has lymphoma). I'd definitely get a second opinion indeed the most import mat thing you can do…[Read more]

Hilarious

David, we all need all the luck we can get. But thanks anyway. Enjoy your window of well being. Perhaps a short break in the lakes is in order?

Take care Nigel (on steroids)

Its not too late for the antvirals, as this will go on as long as she is getting treatment. Acyclovir is good but valacyclovir is better. Don't take no for an answer – creams and ice packs ! The shingles can degrade and lead to bedsores which can become out of control get infected and create all sort of nasties …

Again good luck

Ask the Doctor if Daily 500mg Valacyclovir would prevent this. I'm not sure .It might be limited by NICE, but that would be a scandal.

I take it as I have herpes and treatment favourises shingles attacks – I haven't been bothered with this (touch wood) over the last six months.

Good luck.

Nigel

Hi I'm not a doctor so what I say has no real authority, but I'm a doctors son and have spent the last twenty years working in nmedicine and have a science background.

It might seem obvious and trite, but your dad's problem is not so much Myeloma, but that his general health status is unstable and slipping, for variuos reasons, including the…[Read more]

Thank you all so much for your kind and positive comments. And thanks for the useful advice – particularly about not going on scary websites! Will let you know how the gluten free diet goes and will speak to you more in the coming weeks and months, no doubt. Thanks again everyone!

Traceyx