I am with you Dai, I often wish Peter had not been put thru the SCT part, as he was doing so well on the CDT.
To be made so ill, by the SCT with no guarantees of how long it will work if at all. (Particularly in my husbands case when he only got 5 months) I frequently wonder if he would have had a better outcome on a very low dose of of CDT…[Read more]

Dear Eve
Your slim problems sound so familiar I could be reading Peters record. He always looks well too when he is 'more ill'
I know your worried about blood clots on lungs but Peter got them when on velcade he had so many of them they could not count them. He was puffing like an old man running a marathon. So breathless that I was more…[Read more]

HiBridget
I know nothing about cystic fibrosis except a friend who has a very good friend who has had a transplant, he took her to London for a short break and it was the 1st time she had been that far away from her hospital. He said he was terrified for her. So I cant imagine how your life has been. But sounds as if your daughter lives life to…[Read more]

Hi Eve,
Cant imagine who you have offended, but don't worry I it was not me!
I hope things are improving for slim and you too of course. How is he and how are you coping. Its a long day at hospitals and very tiring for both patient and loved ones. I think you must be done in by now and praying slim gets home soon so you can have a 'rest' Keep…[Read more]

Hi Kathleen,
I know exactly what you mean.
I have found myself sitting watching the tv with clenched teeth and the muscles in my neck going into spasm. The annoying thing is its not even a programme to get uptight about. Just cannot relax. More recently realise a glass of the hard stuff helps but cant be doing that all day every day so will…[Read more]

Hi Bridget, He had a cough last month when we were on holiday and does do a bit of it when on the 'week off' But all the other side effects which on there own are manageable but when pushed together become a 'bore' Lots of cramp if not enough fluid intake, feeling sick often. Daihhoria frequently with no understanding what has caused it food wise.…[Read more]

Bridget I think its the Revlamid…….
There are rarely two days alike for Peter. There is no rhyme or reason as to what he will feel like or when.
Used to be able to know it was a certain stage of his medication but that is no longer the case. Some days he is full of energy and then he goes downhill fast and has to spent the day in bed. No…[Read more]

Hi Eve
I hope today had been a little better for you and slim. I am thinking of you both
Min

Hi Dai
When Peter was on velcade in October last year, he was well enough to go to work daily. Only for 3hrs per day but it was more about the social contact. He had no sickness or tiredness, BUT after his 1st injection he became breathlss. It took several weeks to discover that he had developed pulminary embolisms caused by velcade. He had 4…[Read more]

Hi Angelina,
I do believe in the' mumbo jumbo' do you know a number or whatever for stress anxiety.
I am not being patronising, but if there is an equivalent 'Angel Charm" for the terrific amount of stress I am putting myself under I would love to learn more.
Thanks
Min

Hi Bridget
Im awake, sleepless and ready to listen Thats what happens when your retired and don't have to get up for work in the morning……… You know how it is in the middle of the night and everything looks bad? After a good nights sleep everything looks better.
I think you have seriously overdone it with the housework and your body is…[Read more]

DAI
I only just worked out how to play it……….duh. I had several unsuccessful attempts and gave up but when I saw other posts I realised it must work.
It sounds extremely professional and you look incredibly healthy in that profile photo.
Big well done
ps bought Adele 21 today its brill first CD I have bought in years!
Min

Dear Eve
I feel for you and the frustrating and annoying situation you find yourself in.
1st things 1st go and find the pals (patient liason) department and jump up and down. Make very loud noises and make sure a lot of people are listening.
Make your voice heard in the ward when you see some of the major problems dont worry if the other…[Read more]

Hi Eve
How is married life now your an old married woman?
I do hope slim is on the mend and out of the 'deep water'. I cant imagine how you have been able to deal with his recent hospital stay.
I am just hoping you too are ok. Its so stressful when your loved ones laid up in hospital, Im sure he is in good hands and or on his way home soon.…[Read more]

Hi Bridget
Weird aye, does that mean your a one off or one of many weirdo's. Just having mm consignes mm sufferers to weird as no body knows what the heck it is!
Im sorry to hear of your rise in light chains; but is that significant if you don't have Light chains? Oh its all so complicated, and don't know if I want to break the public…[Read more]

very Funny

Hi Bridget,
Hows it going with Revlamid? Peter is 'feeling ' really good on second week of 4th course. 1st week still washes him out a bit. But once its over he picks up really well. Still very 'snotty' especially at mealtimes and if he hits any cold air. Have to keep him out of the freezer aisle. HIs back has been really good since he…[Read more]

Hi Dai
If you go to the home page of of this site you will see an article on subcutaneous velcade from the Lancet Oncology, which hopefully will add some arrows to your bow when you see him/her. Good Luck and who knows you may be a groundbreaking Velcade patient.
Regards
Min

I would not be too concerned as long as he is not trying to rive his skin off! sounds like and allergy to one of the medications he will be getting post transplant perhaps an anti biotic. If the health professionals are not concerned they probably recognise it. Following the high dose chemo, the body is very sensitive to all kinds of things that…[Read more]

Hi Eve.
Don't they just drive you mad with worry with there attitude to illness.
I buy fizzy water, flavoured still water and 7up. The 7 up is supposedly approved as being full of beneficial salts. Don't know how true that is but, Peter was up all night with a sort of bug. Difficult to know if its a sickness and trots or just the normal start of…[Read more]