Hello,

David – thank you for asking this question and thank you to Rebecca and Helen for your helpful replies.

Phil is slowly relapsing for the first time and at his clinic appointment today light chains were mentioned for the first time ever. Since his diagnosis we have only ever been told about the PP numbers. I knew I had read this thread…[Read more]

Hi helen

Thanks for that. I’m in bed and when you post came through I went down stairs and read it to him. It has been a relief to him that you and Jane have had experience of this drug. He is sitting down stairs playing a game. Not the same man as yesterday when I posted he is more relaxed and prepared to go go on with the mds and not phone…[Read more]

Hi Tom and Jane

Thanks I talked Frank into taking another one today he was reluctant but it’s great what a bit of nagging can do. He took it this morning and he’s has been as high as a kite. I asked him if it eased the pain and he said no but he couldn’t give a ****. Should be fun when we go on to 2 a day. But he’s been good this afternoon and…[Read more]

Aww bless you Frank well I can’t help as yet but just wanted to wish you luck with it Frank I hope someone will pop up and give the advice you both need.

Love Tom xxx

Hi Liz

Some people have been on Revilimid for years and doing well,so let’s hope Kevin gets a good length of time,I think most of these drugs leave patients prone to infections as they batter all the cells not just the Cancer cells.

Well Slim has started second cycle,from now on it will be every week,he is holding on well,tired and all the usual…[Read more]

Hello eve,

Really happy for you and slims continued good results, only popped in as I haven’t been on for a couple of weeks, kevs had an unexpected hospital visit! High temp: and very bad diarrhoea which we think is related to his treatment revlimid as this is getting to be every cycle, so now the hospital are keeping a close watch as he is on…[Read more]

Hi Carol,

Congratulations of your great results at day 42 🙂

As with everything MM related it seems to depend on the individual hospitals and doctors. My husband Phil has Zometa and he never stopped having it. The day he was admitted for his SCT he had his monthly Zometa and this has carried on monthly with no break since his SCT which was…[Read more]

Hi
At least your hospital are on the ball last time I had pneumonia at the clinic visit I told them I was struggling to breath they told me to take a few paracetamols in hospital for two weeks after that
good luck with the pomaliamide I do hope you make Greece in may
Try to keep well
regards Jox

Hi Carol

Frank had SCT March 2013. After 100 days all was good and they started him on Zometa. Had it for a couple of months and then his phosphate level dropped and Zommeta was stopped. Have him on meds to improve phosphates but they are not working yet so they are still with holding the Zometa till they start to rise

Hope all goes well for you
Jean

Hi Jeff

Myeloma UK supply a diary (free) which gives lots of segments. Eg blood results. Theses are pre printed for you to fill in and at start of section gives you the normal range. You can see at a glance what the bloods are doing. There are different sections – questions to asker, appointment etc. I have been using these diaries for nearly 8…[Read more]

Hi

Well I can only think it must vary around the country.

Never had any problems getting any results bloods or diagnostic test,if fact on the odd occasion like this morning doctors have asked me can they photostat results they have not had!!!!.
I do carry a large red file,up to date and in order,so if Slim has an emergency admission,or like…[Read more]

Hi all
Andy sorry to hear that you had another stay in Hotel NHS but just look and how they looked after you. Don’t worry about the brewers, Frank will keep your end up. Enjoy Greece. Great to get away

Maureen I too thought I was seeing things on your post but it gave me a laugh. Hope you have a fantastic time.

This is the third time I’ve tried…[Read more]

Great news Carol. Franks new cells where 1 year old yesterday. He’s also,in remission. Thank God. Just loved your photo

Hope it’s loooooooooong

Love Jean

Carol I award you an “A” also well done you, it’s great news, and as for your consultant be like me Carol if he is happy am happy.

From one onwards and upwards to another have a great week

Love Tom onwards and upwards xxxx

Hi Vicki and Colin

Bloods where good except for phosphates and vitamin D. Said shingles were drying up nicely and that he was lucky. Said he needed natural vitamin D so we left hospital and booked 11 days in Lanzorato. Never been so looking forward to it. Going 16 March. Mauritius how fantastic. We lived in South Africa for 10 years (much younger…[Read more]

Hi Andy

38.1 a bit of back pain and they took you in!! Now that is service,not taking any chances with you,!gSF injections as well.all good Andy,then a couple of pints at the local,real ale plenty of iron in it!!!,and to top it up the lovely Dex,all good.
You have now passed muster for the next round!. I call that a good service Andy. No one…[Read more]