Hi David

Funny you should mention the high incidence. I thought. That when I saw several on here, including us from the west country!By the way, took your advice and got out and about in the forest of Dean and Cotswolds. Again not too far from us. We enjoyed it. Getting braver and who knows might gather farther afield…..

Best of wishes and…[Read more]

Hi ann and Peter

Just wondering how it's going. Colin is on day 11 of cycle 7,second lot of dexamethasone. So far so good…..

Ann I read your last post. I was chuffed that you said I was positive. That's what I try to be, but how hard is that sometimes!!!.still my thoughts and prayers are the same each night. Cure for all and Colin to beat…[Read more]

Hi pilgrim,

My partner Colin was diagnosed last october 2011 with mm. It's a real shame you've had no support from your Gp, colins has been brilliant from the start, however once the consultant is in place they are reluctant to offer advice but will listen and be supporting, or should be!

I'm always hesitant to say what is significant or not…[Read more]

Hi Antoinette,
🙁
I believe the standard phrase is welcome to the forum!. My partner Collin who is 55 was diagnosed last October and it was a real bolt out of the blue. I'm sorry that you have been diagnosed with mm. Scared I can understand!!!!. I'm scared for Colin and spend each day worrying. However on a more positive note. When we…[Read more]

Hi ann and Peter,

Sorry to hear Peter is feeling so rough and you ann in a different way. This forum has helped me loads too (and Colin) as I share all the tit bits and information spotted! That said the mm is still there. I do sympathise with you Ann because there are times when that helpless lonely feeling can wash over you-usually when…[Read more]

Hi dai

My partner Colin was diagnosed in October 2011 and is on cycle 7 of cyclophosphamide dexamethasone and revlimid. His pps have come down from 17 to 1.2 so far and light chains down from 31000 to 1300!. Like everyone Colin gets some good and bad days with dexamethasone. Some random nightmares, some interrupted sleep and more emotional…[Read more]

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]

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]

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]

Ann,

I can really understand where you are coming from. My feelings go from elated when Colin can do stuff ie yesterday some work in the garden then totally shattered by that!. And slept for most of the early evening and beyond. I can tell you I have shed some tears over this…..why us but why anybody on my sensible days! (try not to say any…[Read more]

Hi Alison

Thanks for your info. I will certainly take your advice about the Internet. Keep me posted on how it goes with your mum and good luck with the impending arrival!

Vicki

Hi Ann,

I was just wondering how you and Peter are getting on with the treatment?. I tell Colin that the 'baddie'medicines are our friends because they are knocking out the nasties floating about in the blood.

Roll on when we can read they have found a cure or praps having an injection once a year!

Vicki