Hi Bridget I agree what a lovely man. There is a temptation to reveal his name because of his kindness but temptation will be resisted

Love from Gill xx

Hi Tony

Wish I could be of some help but your are in front on this journey,the help line can most help you here its worth a call,she can also put you in touch with some one who has had the same treatment.

My partner is on MX1 trial he has the ctd side,what the trial offers is if ctd has little effect it is next round of drugs not on nhs…[Read more]

Hi Jet Good luck with your SCT Stephen has had one and is duie to have another later this year. He is not dreading it like he did last time as he found it quite managable. He is dreading being away from home (old softy) but we both hope that it will put him back in remission.

I kept a diary thingy on the old site about his progress while he was…[Read more]

Goodness Sarah I had to look twice at your photo to realise that you are not Kate Humble. You look just like her 🙂 🙂

I envy your energy Good luck with all the lambs Gillxx

You moan all you like Eve. Why not? I must say that we do not seem to have the type of problems that others here seem to have with getting prescription meds.

They seem to issue a prescription for us to take to our local chemist and then it gets filled. Sometimes we have to go back to the chemist's after a few hours while they get it in and…[Read more]

No idea what it is Min sorry Have you spoken to the nurses on here? Gillxx

Thanks to everybody for all the replies. Stephen is listening to his own body now and again "giving in" as he puts it and resting more often. It makes such a difference as when he is not very, very tired he can do some of the things that he wants to do without feeling crippled.

Thanks Min for the poo pee tip We had already put the poo-pee pad…[Read more]

Hi Fiona

Good luck in the marathon hope you raise lots of money, you deserve to, I can only run across the garden!!

Sarah

Oh Bridget you have no idea how you help to lift me and make me giggle!! I only wish I could do the same for you!!

We have just finished lambing our flock of 230 ewes, I love working with my son, what a great time, exhasting though, wish i looked like Kate Humble on lambing live!!

Enjoy this wonderful weather I am!!

Sarah xx

Hi All

Keep moaning it does help! i have worked for many years in the NHS as a nurse and for the last 9 years a carer for my husband as well, who has had 2 sct. At times i am so ashamed of my profession and at others in awe! The red tape today is awful, sometimes for good but not often.Gordon has learnt to keep abreast of what is going on and…[Read more]

hi Mark

Hang in there Mark,Is it a tumour on the skull or lesions? try to be positive,It is hard,and no matter what anyone says you and your family are the ones going through this,Wish you well mark

Hi Izabella (sp?) It's a beautiful name.

Horrid, horrid time you are going through Kev will turn a corner and you both will have a "normal" life back. I remember before Stephen (mm husband) was first told he would go for a SCT we were told "We will make you feel worse before we make you feel better" Ain't that the truth! Unfortunately you both…[Read more]

Hi Bridget and Min

Thanks for confirming it,s not me going mad ,just tired.At the stage Slim ,s going hot and cold both awake all night then hospital for consultant.He had not been given zometa into 6 week of treatment,told tuesday when taking blood,no zometa,told thursday phoned lunch time to make sure not forgotten phoned back come in 1 hour…[Read more]

OK I have now withdrawn my pity for Stephen's bad tummy on Velcade. Because he was not affected by the tum problems on previous doses HE WAS NOT TAKING HIS ANTI SICKNESS DRUGS!!!!!!!

After a particularly bad vomiting stint where he couldn't even keep water down he took the tablets with a huge glass of water and then immediately up-chucked…[Read more]

Jet

having hyercalcaemia is bad and with the akf,Once you were put on drip with in 24 hours you would have seen a good improvement,drinking lots of water to flush kidneys out helps skin.Water seems the key to having good effect on skin and hair flushing excess drugs out of kidneys is important.The bone infusion helps with the pain relief.there…[Read more]

Hi Mike and good luck with your treatment. Gillxx

Hi Mike

sorry you are joining this club,but you will find it an experience in it self. lots to look at and lots of info here takes sometime to take it in.
My partner is coming up to 3cycle of chemo 21days of ctd myeloma x1 trial.

This site has helped me a lot,some great people on here,have a good journey

Hi Jet and Bridget

I do not think gender is the key,My partner on ctd takes 20 tablets 2mg dose 4 days running then repeats dose after 7 days.his chemo cycle is 21 days!!!!

has a good quality of life when on dex although a bit short tempered,takes a few days off dex and is very very tired,hot and cold,not wanting to eat.

The strange thing…[Read more]