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 in conjunction with pp levels, my light chain levels are also monitored. Tracey x
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 is find the right doctor, motivated, communicative, caring and competent.
Good luck
Nigel
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 Myeloma.
Health status is all about little things, degradation starts with a small change which spirals into crisis, recovery is the same, a small victory leads to minor improvement, which in turn allows another victory and so forth – a doctor's job is to turn it around to restore that delicate dynamic balance that we live in permenantly and which is so much more fragile than we realise. When you are living with a chroinic disease, keeping that balance is really important – diet exercise, attitude etc.
As for his depression – goodnes what I'm going to say is hard for someone who hasn't been there to hear. He probably thinks that he's had it, that this time he isn't going to make it through, that his life is over and what is worse he can't get out and do the things he needs to do (we all have a bucket list) and he can't even talk about it, because of the taboos (we spend a lot of energy caring for our carers, when in fact its pretty hard dealing with our own situation and sadness and sense of loss). Of course this doesn't have to be the case, he will hopefully get over the urinary tract infection and the catheter can come out, the diarhea will stop hopefully and he'll be allowed to go back on food. Of course hospital food is horrid, so see if you can take him in things that he loves to eat (when he comes of the drip). If he can't talk to you, and I expect he can't as he doesn't want to frighten you, it might be worth getting a good, old enough but good looking (he needs to build trusting rapport) psychologist to talk to him there is probably one on the team, but of course he has to feel drawn to him/her and want him or her to come and then be prepared to say what he can't say- what's really important is closure and coming to terms with our mortality and then understanding that the only choice is to make the most of it. Of course the really depressing thing is when the disease, or our nature (I'm a really lazy bum) stops us from doing that – that's when I slump – and I blame myself.
I reckon he is really bored as well – and miserable and uncomfortable. It can, might and probably will get better – but obviuously he is walking a wire and whilst not being overly alarmed you should be aware of this – and of coourse so should he – there are probably a bunch of things he would like to get done – and this should shake his depression –
Where is he hospitalised and what are the medical staff likeN – how does he get on with them?
I'm sure I've overstepped the mark and apologise for that, I took Dexamethzsone today, so I'm pretty hyper.
Take care, good luck, bon courage – and he's really lucky to have you.
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
you might also find this interesting : http://www.nhsconfed.org/NATIONALANDINTERNATIONAL/NHSEUROPEANOFFICE/OURWORK/Pages/CrossBorderHealthcare.aspx
This is very interesting. Could you clarify in what way it is easier to get treatment and reimbursement in Spain than in France ? Would a European Health Insurance Card help?
http://ec.europa.eu/social/main.jsp?catId=559
In fact on reading that I discover it wouldn't help as the EHC doesn't cover planned care only emergency care. As far as I know the cross border health care directive got through the council late last year (finally overcoming the resistance of the UK) and this should change things.
However planned medical treament is allowed as well:
http://ec.europa.eu/social/main.jsp?catId=569&langId=en
and this is the link to the NHS site :
http://www.nhs.uk/NHSEngland/Healthcareabroad/plannedtreatment/Pages/Introduction.aspx
On a practical level, wherabouts in France did you want to go ?
I manage to take short (1 week) holidays between Velcade cycles … Though I tend to stay 'close to home' or rather close to care structures.
Keep us informed as to how you get on.
All the best.
Nigel
It sounds like he has very low platelet levels given the bleeding. I doubt the biopsy caused the pain as the pain was present prior to the biopsy, was it in the sternum or the pelvis?
Are you sure there is no loss of bones – it would seem a logical explanation for the back pain, though of course the back pain might be independant of the disease – has he ever had a bad back before.
The start of treatment certainly relieved my pain, but then I am very lucky.
Good luck to you and above all to your husband.
I had minor pain up to diagnosis, then with treatment it went away and the bones healed (I had about an inch missing from a rib). I think it was the steroids that got rid of the pain and the Bisphosphonates of course that led to the healing. i guess I'm lucky.
Does paracetemol work, or is it much worse than that ?
Thanks, this is very much what I do with thalidomide and dex …