Hi Vicki and Craig
Onto the home straight now, just a few more weeks of horribleness then recovery.
Yes take the anti sickness stuff every time it is offered was my motto, I slept through one med round and forgot to ask and lived to regret it. The process is horrid enough without being extra sick, it doesn't always stop it or the nausea too, so…[Read more]

Hi Tom
It's a relief to hear that you don't need insurance to come to Newcastle, 😀 I know it's a wild place…..the Marriots a bit posh mind and far enough from the quayside
Love Helen

Ok Vicki, we've all got our fingers crossed now and hope that it all goes according to the book.
Love Helen

Hi Ali
No real celebrations, big bunch of flowers and family lunch today, very nice:-)
I had terrible trouble with my gut from end to end after transplant, only settled really slowly, still not 100% but close now. I was on metoclopramide, gaviscon and lansoprazole for about 2 months afterwards and only ate bland stuff for weeks. In the old days…[Read more]

Hi Dai
I was just wondering why you were so quiet and hoping the revlimid hadn't rendered you ill again. You'll have to keep us up to date on your set for Johns fundraiser too.
Love Helen

Dear Keith
It's a rough ride you are having with this, I don't know how I'd feel about it. 🙁 but there is evidence that this works quite well in slowing the disease down. Hopefully, after month 5's reduction in the dex you will stop the diabetes complications and pick up a bit, I do hope so. Hang on in there.
Love Helen

Hi Angela
Welcome, I've had a stem cell transplant so can tell you about that from my point of view, and there is much about them on the site which will give you a good idea about what to expect. I've not had a hip replacement but have looked after people with them and this is a specialist orthopaedic subject when it comes to myeloma.
Which do…[Read more]

Hi Wendy
Another close contemporary then, I didn't do anything special for my anniversary but got a large bunch of flowers which was nice. Had a sip of wine again, but it still tastes terrible, I tried! 🙁
As for Peru, my theory is that mosquitoes don't like altitude so if I go to Machu Picchu it's all above 2000ft, can't do the rain forest…[Read more]

Hi Ali
Hope all is progressing well? Bet your mums spark out on the sofa for large parts of the day still? Are you coping ok?
Love Helen

Hi Jo
No idea about this subject really but the cost is dependant on what drug is used and how much you have, for example,
Aranesp is about £15 per 10mcg, up to £735 per 500mcg injection. I'm not familiar with these drugs but can look them up in the magic book at work if it's of interest. Good luck with it, if it works it has to be better t…[Read more]

thanks all and Helen, a belated anniversary/birthday wishes to your new immune system. Mine is on 1st September!

Did you celebrate?

Now onto holiday planning which I have been doing more of since I found out the good news. I cant seem to find anywhere I want to go to that doesnt have risks from maleria, dengue fever,japanese encephalitis in…[Read more]

Hurrah

How did you get on Tom? Was sunny Newcastle all you expected it to be? Where did you stay? Did they put you up or did you have to do that for yourselves?
Love Helen

Hello Wendy , don't think that was an over reaction, I'd have been the same. Its good to know they have trucked back down again. Lets hope they stay there, where they belong. I'm totally paranoid about every ache and pain now as well. I'm sitting here aching all over since the zometa on Tuesday, it still knocks me out for a few days, even after…[Read more]

well good news, I rang up today to find out my light chain test results and my Kappas have dropped back into normal range, from 22 to 14!! Delighted of course but feeling somewhat embarassed by my over-reaction. There are lessons to be learnt methinks!

Hi Ali
It's nice to know contemporaries are out there, thank you 🙂 Do you have a homecoming imminent? Are the platelets up?
Love Helen

Hi Jean
I'm told it doesn't matter when you take them. Always at the same time means you are less likely to forget them. Dex keeps you buzzing sometimes so morning works for many, thalidomide and lenalidomide make you tired so evening is often better, cyclophos needs lots of fluid so you can be up all night peeing! >:-) but if Frank is able to…[Read more]

Hello Dai
Are you cured now?
Love Helen

Hi Richie
Welcome to the site, hope you get some normality back soon, it's a very frustrating situation to be in. No doubt you will be. Kept under observation quite closely from now.
You should look on the under 50 site for some contemporary views of the situation, not that we don't want you looking in here too.
Love Helen