[WhamsterParticipant]

Hi Ted, well that's the first treatment up and running, Velcade injection in stomach, 10 Cyclophosphamide, 20ml Dexamethasone. All in and doing their thing. The nurse at St. James's was brilliant when she found out it was my first treatment, she put me so much at ease, I must admit for a bloke of 56 I was scared. So I have everything I need at home now anti-sickness tablets, anti- viral tablets, bladder and stomach protection tablets. I just hope I can feel as well as I do now for the longest time possible, I've just cooked myself Sausage Egg& Chips, and Janine let me because I felt able.
So all in all today has been so much better than I imagined all last night, laid awake worrying.
Hope things are ok with you, speak later.
Cheers,
Peter.

[dickbParticipant]

Well, now the first one is over, the rest will be easier, you will find your feet with it I'm sure and after a while, if your like me, you'll become a bit blase about the blood tests and chemo. You're on your way now, hope Chemo goes quickly and smoothly.

[teds31Participant]

Hi Peter and Janine, Well I cant be much use on these things as I have not had any treatment (yet) but I do know how nice the people at Leeds are they really do make a difference when they are so considerate and helpful. Did you get a card for a personal MM nurse, I have one and you can ring E-mail her if you have any questions you need to ask. Take care. Ted

[WhamsterParticipant]

Hi Ted,
Sorry it has taken so long to reply, it seems there are not enough hours in the day. I am happy that you have not had to have any treatment ( I think it is what is called Smouldering Myeloma and they just monitor your system)
I am at stage 3 so I am getting intense treatment to try and bring it under control which entails 3 lots of chemo a week, 2 weeks treatment then a week off, the week off is great! I even managed to go to see my Mam & Dad last week in Co. Durham which was good for all of us I think.
I am a lot more in the picture now and I feel a lot more in control of my medication side effects which have not been too bad since the first cycle.
I am now on cycle 2 of 6.
So all in all I am feeling more confident about the possible outcomes, one of which is to be where you are and just being monitored.
well I have just been warned I should be in bed, nurse Janine my wife is not to be trifled with!
So I bid you goodnight and hope to speak again, and sorry about delay.

Night
Peter.

[teds31Participant]

Hi Peter, Yes mine is smouldering MM as you say, I have had this for about 7 years, which is a long time they say 50% of people with Smouldering reach the full blown in 5 years so I have been very lucky. The pressure is on each visit though. Glad you feel a little better now as it is a up and down disease, take care and do as the nurse says (Janine that is 😀 )
Ted.

[WhamsterParticipant]

Hi all, sorry for not posting for a while! Time seem to go nowhere. I have just finished my third cycle of CVD and I am looking forward to my week off, my consultant has allowed me to alter how I take the Dex (10 first day then 5 for the next two days) and it is a lot easier to cope with the side effects.( apart from sleeping of course )
Janine has gone back to work now and I am fine attending for chemo on my own as it is very quick and quite painless, I have an injection in my stomach and off I go.
Janine comes with me on all my consultant visits just to make sure we both understand what is going to be happening over the coming months, I really do not know how I would cope with this disease without all of her Love and support, she is my angel:-) and the strongest person I know.

My eating is a bit of a problem, I can't eat any solid food, bread and pastries and things like that without feeling sick, but I am seeing a dietician on Monday, I am eating loads of fruit&veg though, even making my own soups and my daughter Sarah is making me soup as well.
My kidney function has risen twice from 12% to 24% so that is more good news.

I also found out about the Myeloma support group in Leeds at the Macmillan centre run by Rita Rumsey and we are both going to the first meeting on the last Friday in September,I have met the group briefly and I am looking forward to seeing them again.
So a positive post I think, after reading some back posts, very positive.
I am just going to say how much all the replies from everybody have helped me cope without feeling alone in a situation I have no control over, I thank you all for your advice and support it is without doubt the one thing that has helped me find my way in this minefield and if I can find a way to help someone new I hope I can be as good as you guys are.

ONWARD & UPWARDS:-)

Peter.

[Author]

Posts