Dear Tom
What a blow for you, but you are right you just have to get on with it! I finished 8 rounds of Velcade in November, my feet are a bit numb still but improving every day. Energy levels not brilliant but…. I go back to work in January and my light chains are down to 7. It is all unpleasant but doable. So my friend its onwards and upwards…[Read more]

Hello Pauline and Marc
Welcome, my journey with this bunch began with the Myeloma xi trial in February 2011, I had RCD and SCT within 6 months and then had around 18 months remission. I've just recommenced treatment last week for relapse, but I'm good. Back to work tomorrow.
Hang on in there while you get used to the new life you have.
Love…

Hi Vicki
Thank you, I'm doing quite well really, tired of course but I'm feeling ok. On the dex down day so have sloped off to bed leaving the husband and neighbours carousing in the garden, I feel they have had enough exposure to my dexilicious behaviour over the weekend that they need a few hours off!

I have always been able to knit, and…[Read more]

Dear Wendy
What a blow, are you having BMB as well soon? I'm hoping there is still fluctuation room in all of this upping and downing.
I am glad you enjoyed Paris without this knowledge though, the little holidays are islands of normality. Fingers crossed for you.
Love Helen

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]

Hi Christine and Chris
I am so sorry to hear the news that the SCT has been considered to be a failure at such an early stage. No wonder you are feeling devastated. I am sure that Dr Cavet will come up with some alternative treatment or trial for Chris as there are lots of trials out there, but the reason the MUK5 trial may not have been…[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