Dear Dai and Eve
Thank you
I have asked about future trials, unfortunately there are none set to run here in the next few weeks, muk5 is on its way but you need to have tried Velcade and it has to have worked. Maybe there will be others I don't know. They are concerned about my neuropathy as there are very few other options if I can't have…[Read more]

Dear Vicki, Eva, San and Jean
Wonderful holiday in Cornwall thanks, weather splendid as usual down there. 🙂 Vicki, I took the daughter and the boyfriend……. Cost me a fortune they did…. Returned home to the usual frostbite and wind! 🙁 And a letter from the hospital detailing the velcade appointments, :'-( hey ho just got to get on…[Read more]

Dear Eva
Many thanks for this, I will certainly see the optician, I have a supply of antibiotics too…. An enlightened haematologist I think.
San and Jean thanks for your good wishes, I've updated my recent thread.
Love Helen

Dear Dai
I hope it works for you again, i await your musings with interest as I start the same regime with added cyclophosphamide next Tuesday, I'm not looking forward to it, but suppose I must get on with it. I currently have pins and needles in my hands and feet and a black eye which I woke up with on Friday, just what is all that about?
Love…

Hi San
Yes thank you, even have a sun tan! do your mean its not always sunny? The friends we stayed with are going to invite me back soon apparently because I always get sunny weather in Cornwall! 🙂 if only it were nearer Northumberland ! Love Helen

Dear Andy and Steph
Thank you for going,to say goodbye to Keith and to support Sue.
Love Helen

Hi there Ali et Al
Well, as you know I've been there got t shirt etc.

San ( weather fab in Cornwall, it's always like that when I go there:-)) and Jill, I think Ali is right that in frontline therapy it is different to maintenance, but do check when you go. Your mums would have thalidomide (which is an earlier version of Revlimid and can be…[Read more]

I didn't know Keith but got the impression that he was a brave and kind man. Despite what he was going through, Keith was always on hand to offer support and encouragement to the rest of us. I remember Andy saying that he and Keith had been chatting one time in the day unit and Keith was wondering if I would still be able to do a triathlon this…[Read more]

Dear Ellen
I do hope you will convey my feeling of great sadness to Sue, I met Keith at the Newcastle info day last year, when I was at a very vulnerable point. He was so very encouraging, understanding and thoughtful. He will be missed greatly by this community.
Love Helen

Hi Dai
Hope the gcsf continues to lift your neuts and mood. Good luck next week
Love Helen

Hi Pat
I think you just have to do what is easiest and best for you, like Eve says ' no one ever regrets leaving work' I'm still plugging away at it but I'm very lucky, though not sure for how much longer. After I start the velcade I will see how I feel and maybe make the decision.
I hired a window cleaner today, and am seeing a cleaning lady…[Read more]

Gordon Bennett !! Wendy, you must have been really up and down, what a horrible few days for you. I'm glad you have plateaued again. Stay there for as long as possible please. I don't know why they decided to treat now! I was in same cart as you until last week, then out of the blue really, I expected next Revlimid prescription but got 4 more…[Read more]

Hi Helen, sorry not been on for a while but was pleased to hear that your back pain not myeloma related, that must be a relief. Hope the velcade works for you. I must admit to being surprised that you've already started treatment when your numbers were in similar range to mine and you were otherwise feeling well.

I've been at the front of the…[Read more]

Hi Liz

Vietnam and Cambodia sounds great, you'll be 12 months post transplant and should be fine. Just take normal precautions and vaccinations if needed, drink plenty of water and take a course of antibiotics with you just in case. I went to India when I was out of remission and I was ok. Go for it!

Wendy

Dear San, Pat and Elaine
Thank you all for your advice, I went to the hairdresser today, they are so lovely. I'm now sporting much shorter cut, have a bottle of stuff to apply to scalp before treatment starts and an appointment for 5 weeks time to see what's happening. Today it was a bit like yours Elaine, with the bleach stuff touched on the…[Read more]

Hello Liz
Well done you, like Etta I drank lots, walked round the plane every hour I was awake, watched all those films I never got round to and slept as I could. I didn't eat much. I took a course of antibiotics and a thermometer and took my temp every day just to be sure. My consultant also gave me a course of acyclovir as he thought shingles…[Read more]

Dear Vicki
I shall enquire from hairdresser on Wednesday when next attend, before holiday on Friday ( Cornwall ) .
I was just throwing the question out there as I'm a novice when it comes to hair bleach, having always had just rinsed or streaked dark hair. The shopping expeditions with the daughter are dangerous these days as she inevitably…[Read more]

Dear Scott
I'm hoping you get good results from SCT, will keep my fingers crossed that all goes really well for you.
Love Helen

Dear Jan
They never become less worry, even now I wonder if I should just tell him, but since he insisted on going off to uni 4 weeks after my SCT, as a mature? Student ( he had 3 gap years!). He says he told his tutors but is such an independent creature, I have to just let him go. He knows that my numbers are rising and what it means and he…[Read more]

Dear Jean
Congratulations to Frank, every birthday is a milestone, I shall raise a glass to him. I hope you were slightly tipsy too?
Love Helen