My sense of humour.

Andy

Good luck with the bmb. When Colin had his first one the nurse held his hand (so you could try that).The second time though it was ok,ish….:-|

We hope you get some joy with your results as it's about time you guys Wight eh condition and we supporters beat this damn things into submission 🙂

Best wishes Vicki and Colin

Hi there,

Sorry you've had to experience this in your family. It is hard but have faith in the medication and the medical teams. They do a great job. The dexamethasone aren't popular. My pattern colin has just finished a 4 day block and he's very relieved, the side effects have made him feel a bit spaced out this time, and flushed in the face.…[Read more]

Hi Ann and Peter

First of all I hope your bone scan went ok today…with regard to the pain Ann, Colin is on some other tablets for his bad back (not connected to mm, this was what prompted a blood test for inflammation! (some inflammation it turned out to be!), so it's hard to say what pain he's in mm related. Colin sleeps a lot but we're not…[Read more]

Hello jacqui,

I hope your transplant is going well. My partner Colin was diagnosed in oct 2011. You seem to have progressed very quickly! Colin is on cycle 7, pps at 1.2 and light chains at 1300. I know how hard it must be for your girls as it's really hard to stand by and watch someone you love be really I'll, not understand what's going on…[Read more]

Great to hear your news Andy. Keep up the good work and I asm sure you will not (ouch) feel a thing on your BMB 😉 But, just in case you do remember – VASBYTE

Kindest regards

David

Welcome home Jo. I love Skiathos beautiful place. Good news about the readings, just keep stable now and you will be ok, and hang the pound or two 😉

Kindest regards – vasbyte

David

p.s. Just planted some Geraniums out today, a little early but it was such a loverly day I could not resist it.

You I know I had forgotten all about this, thanks Ali,

I am so glad that it helped you, you have made my day.

By the way I mention the taste of the water and it was not the hospital water it was the altered taste buds in my mouth, when I got home it was just the same. My full taste returned Christmas morning in time for Christmas dinner and…[Read more]

Hi Vicki and Colin, Peaks and troughs are par for the course with Myeloma. I think recognizing that the guy/girl you love is still the same person when their personality is being changed by the drugs seems to be the hardest thing to bear for a careers. Stick with it be positive there are good times ahead and get out into that beautiful area…[Read more]

Hi James, Are you new to the site? If so a warm welcome and if not I apologize for not recognizing you.

Best of luck to your Dad, the drugs can have a different affect on different people so there is no "golden rule or treatment path? so to speak. As you say it is very early days yet and the Doctors have to work out which treatment is…[Read more]

Stephen,

Just read your posts and wish you well with your next stage. It's my pattern Colin who has mm. He started his pp level at 17 and his lit chains started bat 31000! (now down to 1300). I can tell you we have been obsessed with the numbers and whether they are goin up or down, in fact it's what keeps us going between appointments.…[Read more]

David

Thanks so much for this. These practical tips will prove useful in time. That said at the moment we won't be going far as Colin hasn't had a date for SCT yet. He has peaks and troughs of wellness and sometimes is quite full of energy in the scheme of things.

We try to eat a good diet and use the same principles as you, peeled fruit,…[Read more]

Hi ann,

Have read all of the posts and it did make me laugh ( I do sometimes) when you said that Peter was stubborn and not keen to post initially. Colin doesn't do the posting but I read them all too him. I then share what I am going to write. I would echo everything on here. When we first saw the number of tablets we could not have believed…[Read more]

I have had a SCT and radio therapy (15 to 20 months ago) and at the moment I am on a plateau, my Paraprotiens are stable at 2.4(ish). I have no pain and am able to do most things, gardening, shopping and some DIY.

What I do before I travel away from Taunton, my home, is to make sure I have any medication I need for the trip PLUS enough for…[Read more]

Hey Man – Cool Dude. Really pleased everything is going well, make the most of your time.

Kindest regards – Vasbyte

David

Gosh, you sound like you have been through it! First of all- the very best of luck to you. We hope that this next phase of treatment goes well and you can get back to normal and enjoy the things you and your family do.

Colin had those rigours- they are scary when you don't know what it is!,

Colin is on the myeloma 11 trial and the light…[Read more]

Hi Andy

Colin has had quite a few infections too and they only detected 1.his temperatures shot up and he had a rigour which is a violent shaking and hard to catch breath. We know what it is now so not so scary. Hope you keep well and treatment beats mm into submission!

Vicki & Colin

Thank you for your reply. We've gained some really useful information already.

I seem to remember reading some of your posts and that you've travelled a bit? Cruises/cycling in the new forest-hope that's you. We are concerned about going too far due to Colin having had some nasty infections and temperature going up quickly which resulted in a…[Read more]

Hi Paul

Thanks for this. Was wondering if anyone would mention the bence jones scores. Would you mind sharing with us where you started in terms of a number and also what your paraproteins were. What stage are you at now?

Colin had just started cycle 7 and the last results we have is 1300 for the bence jones and 1.2 for pp.

The reductions…[Read more]