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]

Hi Gill,
I was wondering where you had got to and this explains why we had not heard from you for a while.
I hope Stephen starts to pick up soon, I know how difficult it is to watch them feeling so poorly. Peter had his 1st GCF injection today following mega melphalan last friday and felt rather sickly for a few days but has not been too ill so…[Read more]

Hi Dai,
sorry to hear your not feeling too perky, Hope it gets better soon. Peters soda stream was bothered by velcade and his GP gave him some rather nice tablets that returned it to normal. Think they were something for an enlarged something or other you men have, it did work a treat so if it persists see your GP he did tell them on the day…[Read more]

Hi Marion
There is nothing much more I can add to the excelent advise of all of the above, however one of the things that I learnt at a myeloma infoday was that the people who are on trials, are having more personal attention than normal patients and it is thought that this very fact was a positive one from the patients point of view and…[Read more]

Dai
I think your songs are a lovely way of putting the mm aside for a while and very welcome too, your talents are amazing. Long may they entertain us.
Min

OMG Shirley,
What you playing at? you go to all the bother of having a special stem cell transplant and then you decide to learn to dive without water. :-S
I think you just like hospital food and wanted to get back in there!:-/
Thank god your Steve was there,when you needed him. I hope your taking it easy and wearing a big elastoplast, or…[Read more]

Peter got a quick phone call yesterday to say they had a 'slot ' free due to a cancelation. Today he had is 1st mega dose of melphalan. Taken with an injection of anti sickness and 2 iced lollies…..
We came home and he had had his lunch on the day ward and was starving so had a cheese and tomato sandwich.. but only managed to eat half of it…[Read more]

Eve you cant leave me in suspense like that, you have to tell me where you bought on line! I need all the help I can get as cant concentrate at the moment.
Peter is going in tomorrow for his 1st mega dose of Melphalan.. timing as usual stinks as I had plans to go to granddaughters birthday..A mere 250 miles and several nights sleepover. Never…[Read more]