[AMcGuireParticipant]

Hello everyone, here I am back again after a 3 year break – an "oldie" but introducing myself on the "newbie" thread.

I'm Angelina, my husband John has Multiple Myeloma and Amyloidosis. We live in Stirling, Scotland, with our 2 beautiful daughters Erin (10) and Teagan (5).

Bit of background: John was ill for months before being diagnosed with MM and Amyloidosis in December 2006. March 2007 he started CTD, he had 7 broken vertebrae and his spine had crumbled. He lost 6 stones in weight and 5 inches in his height. His kidneys are wonky due to amyloid deposits, he's registered disabled as he can't walk very far unaided. He wasn't expected to live 6 months but is still with us 4 1/2 years on.

Six months of CTD put John into remission which was fantastic, the doctors were amazed also. Someone forgot to tell Johns body he's been in remission as he's never been very well or healthy during this time! Its been a runaway rollercoaster ride, not knowing when the twists, turns, highs and lows are coming …. but we just hold on tight anyhow.

MM reared its ugly head a couple of months ago so John started Velcade with Dexamethasone. He had 2 months of treatment which seemed to be going fine without many side effects (or so we thought). John has been sleeping 24/7, I don't think he's even been aware he's falling asleep. 2 weeks ago he fell down the stairs, strangely he didn't kill himself or break bones which is incredible but the fall along with very bad diahhorea has put him in hospital, receiving IV fluids.

Velcade has now been stopped, his consultant wants him to gain a bit strength before they re-address chemo, though they spoke about Revlimid being a possibility.

It appears the Velcade has done more nerve damage internally than we expected. John has been having bad diahhorea without even knowing about it and he's never sure whether he needs to pass urine or not and when he has passed urine he doesn't realise it. The nursing staff are very busy with him, bless him, he's very embarassed about it. I just want to scoop him up, bring him home and take care of him here where he has a wee bit dignity back. Poor soul. He also has low blood pressure and has passed out in the ward so was put on bed rest.

After a few days rest from the diahhorea its started all over again. Nursing staff are working to find a vein currently (I'm just off the phone to them) so they can get him on IV fluids once again, his veins are not being very co-operative!

I really would like to know, from anyone else on Velcade, whether the nerve damage will repair itself again?

Will John now be incontinent forever or do you think this is just a little blip whilst Velcade works its way out of his system?

Thanks for taking the time to read my little ramble, its quite difficult squeezing 4 1/2 years into a few sentences. I used to write regularly when he was ill all those years ago but have had a break until now. I think this is a fantastic source of information for carers and fighters – you get more answers and advice on here than from nursing staff and consultants.

Sending love and healing hugs to you all

Angelina xoxoxo

[DMCParticipant]

Hi Angelina, good to have you back, although I am a relative newcomer to the site I am sure you have been a great support and source of insparation to many.
I was diagnosed with Plasmacytoma and MM in 2009 – 2010 and have had 6 months CDT and just resently SCT which seems to have gone well.
Keep your chin up and look forward positivly :-)We are all here for you and you and John are in my personal prayers.
Love & Hugs to you too!

DMC.

[AMcGuireParticipant]

Awe bless you DMC, thanks for your kind words.

I'm soooo pleased your SCT has gone well; John was never well enough for it so its always been out of the picture – his consultant had also told us how awful the treatment is so I take my hat off to you for getting through it. May you continue with good health for many a long year!

John had a hospital stay for a couple of weeks whilst they rehydrated him after all the diahhorea of volcanic proportions! 😛 He's been home for just over a week and what a busy one its been – we've had all kinds of lovely people out to the house offering stair lifts, magic "self cleaning" toilets, bannisters, comodes, bedtables … oh I could go on. This week we've got the workmen in and the moving and handling team coming to show me how best to lift and support John from lying and sitting positions to standing and back again – he's a bit of a lump really! So lots of wonderful help going on which will make all the difference.

His velcade is still on hold until his wonky kidney function stablises, in one way a godsend to have a break but in other ways I worry slightly that the myeloma may just decide to suddenly accelerate, however I'm guessing that if the numbers were all that bad that the consultants would make a move on it to put it right. So worrying knocked on the head and my positive head is back on again 🙂

John is starting at a new hospital next week, building has finally finished and departments are opening – We're told the consultant there is young, blonde and has lovely long legs!! Heavens, John'll never be away – he'll start making stuff up I'm sure just so he can get back into see her! 😀

Wishing you a wonderful week ahead DMC and sending healing and healthy thoughts your way.

With love
Angelina xx

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