Hi Ali
Seems she's on the up now, Don't let the side effects worry you, she just has to tell them when she goes to clinic that they are still there, ( or have gone) I was nauseous with the dreadeful Diarrhoea for months. It's still not gone away completely but is more associated with the revlimid cycle now. Your mum appears to be the same age as…[Read more]

Hi Ali
I came home on day 16 after the chemo, 14 after the cell return, And yes you do feel suddenly better once the new cells begin to get a grip. It is better to be at home too, my lovely husband kept the house clean by damp dusting with furniture wipes and disinfectant wipes every day, especially door handles and taps, clean towels and bedding…[Read more]

Hi Rach
Welcome to the site, if you private message me I can put you in touch with my 26 yr old daughter. She went through all of this with me nearly a year ago, it's a tough journey for all of you, just let your mum get on with it in her own way.
Love Helen

It's good to know you are back on the road again, many more miles I hope, just shows what they can do sometimes.
Love Helen

Hi Paul
Glad to see you got this hurdle passed, take it easy for a bit, just eat lots.
Love Helen

Hello Teresa
I'm sitting in the garden on one of the few summer days we have had here this year. I'm looking at the flowers and thinking of you.
Love Helen

Hi Wendy
Well let us know the result when you get it. I'm planning Peru next year for the same reasons as you, if there is a biting creature around, it will always tackle me first. So I always smell decidedly unattractively of insect repellant whenever I go away:-(
Jean I'm really looking forward to Venice, we will be cruising on a boat for a…[Read more]

Hi Vicki
I finished induction treatment early June last year and had sct in mid august, ( nearly 1st anniversary, hurrah) my first posts on this site were when I was recovering from gcsf and induction and I was just beyond myself with fatigue. I only had 10 days, just before sct when I felt well. Those few days were really good and I'm probably…[Read more]

Hi Helen

I am thinking Burma or Cambodia but am slightly cautious because of high number of diseases that are out there to catch so may end up being latin america instead. The doc said I could have a light chain test now I had it on Thursday, should find out the result next Thursday so fingers crossed.

Venice sounds nice, take plenty of…[Read more]

Hi Paul

bet you are glad to be home but it will feel strange the next few weeks as you start the slow process of recovering. Seems like you had a relatively easy time of it like me, just a bit of sickness and a sore mouth. Take it easy and enjoy being free as I see what lies ahead is a mini allo, good that a donor has been lined up

Wendy

Hi Dai
You do sound a bit more cheerful.
I'm glad to see there is a possible reason/cure in process, how has this latest development affected the armchair Olympics? Will you be disqualified now for taking life enhancing drugs?
Love Helen

Hi Wendy
Ostrich behaviour is a good holding strategy until you make your mind up about things I find! I'm going to use it when I need to! I'll keep my fingers crossed that it's just a blip in the sflc's, and everything settles down.
Your holiday in Asia sounds exciting, where abouts are you going? I've just booked to go to Venice in September.…[Read more]

Hi Andy
How kind. It was really nice to meet up, keep in touch
Love Helen

Hi Ali
I wondered how you were getting on. I've just consulted the diary I kept and I dropped my bloods to 0 on day 8 from the chemo, they started to come back on day 13 from the chemo and they let me out at day 16 from chemo. My mouth was like leather from day 4 and stayed like that for about 6 weeks, very dry but not really sore. My main…[Read more]

Hi Helen, pleased to say my kidney function and blood count were all absolutely normal however I couldnt cope with the ostrich approach any longer and today asked my haematology support nurse how much a light chain test would cost as I was planning a trip to Asia in November but did not want to go or book anything if it looked as if I was…[Read more]

Ok then, how did you get on?
Love Helen

Hi Keith
Oh dear, you are going from situation to situation, but good news with the pps being down again.
Sadly high dose dex can cause diabetes and it is just another thing to add to the list of its awful side effects, but it's working on the pps so it's a balance of risks. You will have to ask if it's permanent, and what can they do to stop…[Read more]

Hi Andy
I will loiter on the sofas by the research pharmacy at 1.30pm ish, it's next to the coffee shop!
Love Helen

Dear Gill
This must be so hard for you to bear, but as already said, use this precious time as much as you can, we are thinking of you.
Love Helen

thanks for all your replies, Eva, I have asked for a full blood count when I have Zometa on Monday, I think that is a good idea. Dai, I feel like a novice to this game when you mention your light chains. In the scheme of things I am going to try not to fret, it is only slightly outside normal range and it could be because I had an infection when…[Read more]