Hello Helen, I go away 16th June so another 9 days to go.
Yes it was a bit of a so and so but nothing I can do about it unfortunately.
I have a blood test today before the Zometa in the morning and then see the Consultant in the afternoon.
I'll be surprised if I haven't relapsed for the second time as everything would seem to point to the fact that I have.
Either way I'm looking forward to my holiday and MM can go to that place where Lucifer hangs out and stay there.
I'll post to let you know what the outcome is as soon as I've seen the Doctor today.
How are you keeping and did you enjoy your holiday on the other side of the world?
I want to go to OZ when England defend the ashes and then onto Tasmania where I've always wanted to go.
If god allows me that I'll be more than grateful.
Take care Helen…Keith.
Hi Liz sorry to hear of Kev's relapse.
I had a similar experience late 2010 when I relapsed after 2yrs 4,months.
I had been feeling unwell for a month prior and was in a lot of pain so knew something was amiss.
I was put onto Velcade/Dex after having a bmb which confirmed the relapse which put me into remission and my 2nd sct last August.
I had another biopsy last week as my PP's have doubled to 10.98 and the consultant wants to check that the MM isn't on the move again.
I found Velcade ok with very little side effects so I hope Kev is just as lucky and gets into remission quickly.
Best wishes to you both…Keith.
Hello Peggy…I had my 3rd BMB Tuesday and go for the result 7/06/11 unless I get a call before then like on the previous occasion (hope not) when the news was not what I wanted to hear.
Still we only get what we are given in this life and it's seldom what we want so take it on the chin and just get on with it.
Whatever happens I'm off on holiday 12th June after 2yrs since my last one even if I've got to crawl on the tarmac to get on the plane,I will not be beaten.
Hope everything turns out well for you and the result is a good one.
Keith.H.
Thank's for your replies everybody…To answer your point Dai no I'm not on any maintenance therapy.
The only treatment I get is Zometa once a month when I have my bloods checked at the same time.
The Consultant did say that having the BMB was a precaution just incase the MM had become active in the bone marrow which hopefully is not the case.
It's an all too familiar scenario when I relapsed the first time PP's 14 although on that occasion I was in lot's of pain.
At the moment I feel ok without been on top of the world,which I have accepted is a thing of the past.
I would happily continue feeling as I am as long as the MM is kept at bay.
Interesting what you say Dai about the Thalidomide but at the moment I'm only interested in the outcome of the biopsy and I'll keep you all updated on that.
Keith.H.
Hi Sarah/Henry have the same problem myself 9mths post 2nd sct.
I had a similar problem after my first transplant but it only lasted 5 weeks.
I think it's the damage the high dose Melphalan does to the cells in your skin and it is something we just have to put up with although there are creams that can help.
Try to keep your skin well hydrated and of course drink plenty of water.
Keith.
Hi Tina, I do sympathise with you on this one,I've just got over a bout of it which lasted nearly 3 weeks.
Peppermint is an excellent remedy as is drinking hot water.
I went out and bought some pro biotic tablets and take one per day which also seems to help.
I went to my local hospital and got checked over by a doctor as I was passing lots of blood but fortunately it was due to a burst blood vessel on the outside with no problem inside the bowel.
Hope it all settles down for you soon.
Keith.
Hi Dai, I too have had pain, in my right shoulder and the left side of my neck, also some days I get a crunching sensation in my neck as if the bones are grinding together,and they most likely are doing just that.
I've also had a burning sensation type of pain in the middle of my back.
All of this seems to come and go but it is disconcerting.
I had a lot of problems with fractures in these areas so it's no doubt it's left a weakness.
My latest blood tests checked out although they forgot to check the PP's which is the most important.
I have an appointment with the Consultant next month for my routine check then it's a holiday in June the first for 2yrs.
NB By the way took your advice on the MAC and bought one 3,weeks ago and couldn't be more pleased with it.
Thank's again and look after yourself…..Keith.
Hi Jet, I must have missed a thread somewhere when I read you are having another SCT and an Allo at that.
I remember you having your first the same week as my 2nd in Aug 2011.
Didn't the first one work? and what rotten luck that you have it all again after such a short time.
Who decided on the Allo route? and is your donor a close relation or a stranger.
Whatever the case I do hope all goes well for you and that you have a long remission at the end of it.
All the best.
Keith.
Hi Amelie,I was at the recent Info-Day in Newcastle when the question of a possible 3rd Transplant was asked.
Prof Jackson said that it would be most unlikely that the procedure would be carried out a third time and said that even 2nd transplants were quite rare.
The main criteria are age/fitness of patient, having enough stem cells in reserve and remission achieved from previous SCT.
I'm no expert but giving there are enough stem cells to do 3 transplants if John fits the other 2 criteria then why not a third SCT?
I got enough for 2 and as it's very difficult to extract stem-cells after high dose Chemotherapy then that's it for me.
With medicine generally and Myeloma in particular opinions vary between the experts but the general concensus seems to be a maximum of 2 transplants.
Hope everything goes well and John achieves a very long remission.
Keith.
Hi Bridget,I'm pleased you got your laptop and you're back surfing the cyber highway.
I am looking for a new one myself but I'm not sure whether to switch from Windows to an Apple Book Pro.
I do alot of photography and Mac's have very fast Quad core i7 processors plus 2 graphics cards which allows me to edit and post pictures onto my Website much quicker than I can at the moment.
My current laptop is working ok but is very slow and limited.
The drawback to Mac's is the price £1589 for the one I need.
I can get a similar spec with Windows operating system for around £1000 and still be able to use my current software,Mac's have their own photographic software pre-installed so there's my choice.
I'm going to have a look in the Apple store within the next couple of weeks before making up my mind.
Hope you are keeping well Bridget
If it was'nt for the aches and itching I'd be great LOL.
Bye for now…Keith.
Hi Nicola,the name of the drug could be lenolidomide which I have been told will most likely be my next treatment although I hope not for a long time to come.
I have been fortunate that I've responded well to all the treatments I've had and it must be hard to take when a regime does'nt work as in your dad's case,given that there's not all that many that we have access to.
I know it's really difficult sometimes but thinking positive is the only and best advice I can give.
Best wishes and do keep us all up todate…you know we are all with you.
Keith.
Hello Nicola,I'm sorry to hear that the Velcade did'nt work for your dad.
However this is not at all unusual where this horrid disease is concerned.
You can never tell if a drug is going to work until it's tried when you're dealing with such an individual disease.
Velcade worked for me and I had my 2nd Transplant in Aug last year.
My PP's went from 14 to 2.65 but never made the magic Zero as they did after my original treatment.
I've heard of other patients who did'nt do so well on Velcade but did respond positively to Revlimid which is manufactured using Thalidamide.
I do hope things work out for your dad and that the new treatment brings his proteins down to a very low level.
Best wishes to you both.
Keith.
Hi Bridget,you most likely have got your laptop well before reading this post but if not I would say buying a reconditioned machine should be ok if it's from a reputable out-let and with some kind of warranty attached to it.
I would avoid the highstreet and go to a small shop that specialises in building computors as they will give you better service and won't rip you off.
Have a look in yellow pages if you don't know of any locally.
Hope you are keeping well.
Keith.
Hi Andy,yes it certainly was a great day.
The thing about the Info-Days is that although the subject(MM)is the same every meeting is a very different experience so it's well worth going to others.
As was said at the meeting treatments are changing all the time so there's always something new to debate and people to meet.
This was the fourth one that we had been to and we have enjoyed them all.
Take care mate and lookafter yourselves.
Keith.
Hello Amelie,I had my 2nd SCT last August after 8,cycles of Velcade+Dex.
I managed 2yrs 4mths from my first SCT in May 2008.
I also found sucking the ice-cubes quite sickening,in fact I have avoided ice lollies ever since LOL.
I have not heard of anything you can keep inside your mouth to help it stay cold but there is a spray you can use 30mins before you receive the Melphalan but it's not available in the UK due to it not been licenced.
Although I remember someone on this site saying that they were given it in France and it worked well I was also told by a doctor after enquiring about it that ice-cubes are still the most effective method of protecting the mouth,so it looks like John may just have to put up with it one more time same as I had to.
On the point of remission times I've heard of people getting longer 2nd time and others getting less,we just don't really know.
Just take it as it comes and hope for the best is my advice and I hope the procedure goes smoothly for both of you.
Take care.
Keith.
