Sadly Eve I think you could be right but I live in hope! You make a good point about noise, I'm much more sensitive to Noise now as well, I'm up looking for the source of irritating noise at all times and also get driven nuts by music, which in a family of musicians can be a little wearing. i wonder if that happens to more of us, if so it would…[Read more]

Dear Eve
I'm sorry I missed this end of your thread, we have no bluebells up here! I have those Spanish ones in the garden and the aren't out yet. So I never read the last stages of it.
Anyway I am sorry to hear about Slim, what an anniversary gift! He and I have now had 2 .4 years on the treatment wagon. It seems no time at all really.
I hope…[Read more]

Hi Mandy
Sorry I haven't caught up with this either but good luck. Tom is giving sound advice as usual , especially about the eating! Eat as much as you can in the next few days, you will need all the energy you can possibly store. The ill bit for me started 4 days after my cells went back and my hair fell out very slowly from 4 days after that,…[Read more]

Dear Jean, Eve, Tom, Ali, Megan and David
Am now putting all comments re clinics in a letter, and have contact name for someone to address these issues with, hurrah for dex! 🙂 and Eve I have new iPhone for birthday so have note pad with enormous memory and sat for 2 hours today making copious notes. I did tell them what I was doing and I…[Read more]

Hi There
Just to add to this, when my sflc's went up a bit in march my consultant said he would wait until we had confirmation of my BMB result before relapse was determined. Until he decided i was relapsed, i was in remission! BMB was after the third definitely higher result, they crept up over the previous 6 months in a continuous slow rise,…[Read more]

Hello Eve Tom Tony and Pat
Eve I think you should be the secret weapon, can we just bottle you and send you into the department of health? I know I should write letters saying what I think but I'm so lacking in the energy to do it except at 3 am on dex!

Tom you do make me laugh, if you walked into our day unit I'd speak to you! I was just…[Read more]

Dear Tom and Tom 🙂

Well, I've survived, the first velcade and the dex is working well, headache and shattered, not much sleep last night. I have an enormous bruise on my tum:-( not hurting but……. We did everything right, no rubbing etc is this common? , clearly I will not be getting the bikini out!:-(
Thanks for the driving advice,…[Read more]

Hi Christine
That's all right then! I was told that getting back to pre mm fitness was going to be very very slow and not to push myself at all in the first few months. I never did get back to that point before I relapsed.
Let us know how you get on tomorrow.
Love Helen

Dear Pat thanks for this info, it's sometimes good to have an idea of what to expect even though we all differ so much. I'm not in contact with patients much at the minute, we are at the end of an enormous study looking at depression and have lots of tidying up to do. Once that is done I could sit back a bit, I am very lucky where I work, I can do…[Read more]

Hi Christine
I don't have much to add but I do wonder what you mean by keeping fit, is Chris working out? It's just that the effort involved with work out and muscle maintenance uses lots of energy, and I'm just wondering if that is causing a lot of stress to his already very pressured body?

Love Helen

Well, good people out there, does anyone have any tales to tell about working and energy levels while on Velcade? ( with dex and cyclophosphamide)
We're you able to do it? Full time? Part time? No time?
If not what happened?
Could you drive?
Did you have periods where you were 'good' and 'bad'.
Could you plan a day when you could do…[Read more]

Hello Mavis
Thank you
I too was surprised! I had been told it was slow to grow and so would be a few months/ years before needing more treatment. I know my bmb has been the subject of much discussion with my consultant and his colleagues and the considered outcome was to start treatment now! I have a suspicion that the 'mixed' cell nature of…[Read more]

Ps I think you look ok H

Dear David
Looks like you have done an amazing amount. Weather seems to have been good for you too. Hope all your other trips go as smoothly
Love Helen

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