Oh Angelina,
What a dreadful hand life has dealt you and John, and all the many other people on here who have a loved one with MM. Its particularly poignant when young children are involved.
They can be very matter of fact and I am sure they will agree with what you plan. They are your future and they are what matters. Go ahead and do it and…[Read more]

Hi Bridget it was the 1st drug for his mm he was prescribed by a pain specialist nurse, and he could not get away with it. He prefers mst 10 mg or 20 mg and tramadol combined. He hasn't left his bed all day and hasn't had any…Says if he is not standing up he doesn't need it… Might just tie him to the bed now!!!
Hope you find something that…[Read more]

Hello Jo,
It comes from having been a policewoman and writing statements! Old habits die hard.
As for Peter he is sleeping a lot, as eve suggests probably has acid reflux. Feels like sh*** lost loads of weight. Weak as a kitten …. Cant interest him in most food due to the indigestion thing, although he is hungry. He had no adverse side…[Read more]

Hi Heath,
I was really interested in your post, and it has left me needing to ask more questions of the healthcare professionals. Before my husband started the treatment he is currently on we were called in by the consultant who told us Peter had plasma cells in his blood. I did not understand what this meant and when asked I was told it was…[Read more]

Hi Jane and welcome,
Im a carer for Peter who is currently taking Thalidomide for the second time after break for a transplant and velcade and revlamide. It worked wonderfully the 1st time he was on it as a 1st line treatment along with dex.At that time it was discovered that he had crushed vertebrae too causing the hunched back or kyphosis as…[Read more]

Eve when all else fails, buy some suppositories from the chemist. If they fail too see the Dr!
They are just glycerin and something or other but they worked on Peter after a mammoth 4 days and lots of pain.
Love MIn

Hi Norman
Try this one… http://www.insurancewith.com
. I used it in April and got a quote down to £130 for both of us to Cyprus from nearly two thousand with other companies. Peter was on Revlamid at the time. They call it a Maintenance therapy drug for insurance purposes!
The woman who established the company had breast cancer and wanted a…[Read more]

You have been busy Dai, what a shame and how did you cope with the embarrassment.
Nothing like a good clear out to give you an appetite.
Peter was the exact opposite on Velcade and had the runs constantly needed to take tablets for it it was so bad.
Just re enforces the fact that your all different in how you react to the drugs. But now…[Read more]

Ok Today
Two pints of blood please. Don't mind if I do. (Says Peter) Actualy it was two units not pints
He was feeling lousy today had clinic…. light chains from last wednesday Five thousand and something. Didn't hear the rest just happy with that. that was 9-30am we actualy got seen quick for a change. The day ward now that was different…[Read more]

We were at the day unit today at 9-30am.
He has a mild infection of some kind, don't know yet what it is but they sent bloods off for a culture.
His WBC is down to 0.47 neutrophils 0.01 platelets 5. He was given a bag of platelets a new kind of GCSF injection and a box of strong anti biotics. He fought of the suggestion to give him two bags of…[Read more]

Sunday was not a good day, he had a long lie in and woke up with a pain in his tummy, now thinks he has a peptic ulcer, lots of belching and heartburn and indigestion..
Following which he had lots of nose bleeds but stopped when he lay down.Yesterday he had swollen legs ( not today though) Very very tired, felt very cold and had an ever so…[Read more]

So sorry Bridget,
My thoughts are with you and your family at this sad time
Love Min.

Good Find Jet, very very interesting. Thanks for that. How are you doing these days…Must be getting near to transplant time? Hope its all going in the right direction for you
Min

Hi Renee'
It is an awful shock to get an MM diagnosis. Particularly when they accompany the diagnosis with the fact they cant cure it. BUT they an treat it and there are lots of things to be taken to get it under control. Don't worry about the quantity of tablets they all work in synergy with one another to do what is needed to knock the cancer…[Read more]

Hi Chrissie
How are you? very worried I suspect and you have to take care of you as much as your husband. Its not easy but if you don't look after yourself you wont be able to care for him. Try and take some time out if possible and just escape the turmoil.
My husband was a keen DIY r and keep fit fanatic who was reduced by 4 and a half stone…[Read more]

Im so sorry Bridget,
I thought the Marie Curie nurses were able to provide beds at home. And or Macmillan!? I think they may require some notice to be able to.
We have a loan equipment department in the council for these type of things here.
Its so sad that he has had to go away from his home particularly at his age, he belongs to a generation…[Read more]

I think your absolutely right Dai, everyone starts with CDT unless there is a problem. Nice are very clear about it being 1st line treatment. Its almost been a your getting it wether you like it or not. drug until the X trials
I personally feel that whilst Peters consultant is doing his best its the best that NICE will allow him to do. Almost…[Read more]

We are not sure Dai, my limited understanding is…… because he did not get his light chains to zero last time they intend to attempt that this happens this time. Soooo it may be that he has to have another mega dose of melphalan before the one prior to transplant. Ideally they want to avoid infections and his needing lots of blood products.…[Read more]

I like the sound of you and your partner in crime scrumping strawbs… I have been away to visit Grandchildren and our adventure was to go to Stratford on Avon where I parked the car and forgot where!!!!! The poor children will be dining out on the story in years to come. They are only newly 6 and 7yrs old. It took so long to find it we were…[Read more]