Hi Jean

Have read your posts and I feel for you…..and know how you feel. These strong willed men eh? It is so hard to know what to do for the best. I worry day in day out and when the treatments are delayed I worry even more. I hope you and hubby get the best treatment whatever that turns out to be. The thing that makes me cross is that…[Read more]

Hi Helen,

Thanks your post has cheered me up! I feel positive most of the time, as does Colin, but he has dipped a bit just recently so I'm looking for all those good news stories like you. We'll keep going,as you do, but sometimes it's hard as you know. Roll on next consultant visit, perhaps mm will have disappeared ha ha!

Vicki

David,

You are an inspiration, keep going, enjoy all you can,remember numbers are only numbers and there to be proved wrong!. Hope the geraniums are doing well 🙂

Vicki x

Helen, thanks very much. It's reassuring and helpful!

Have you had and SCT ? Do you mind me asking how long it took for you to get from the start of the induction therapy to the SCT? I think colin is getting fed up now. He has just completed cycle 7 of dexamethasone,cyclophosphamide and revlimid. We are awaiting results of cycle 6 when we see…[Read more]

Hi David and anyone else who is listening!,

I was wondering. Colin had a stay in hospital over the bank holiday weekend until Wednesday just gone. Came out Wednesday lunchtime with a load of antibiotics. Looking back he always seems to feel worse at the end of his cycle. Say days 15-21 onwards. This time he finished cycle cycle then 3 days…[Read more]

Hi Ann,

So far so good. I know what you mean about feeling useless!. I too ask Colin all the time if he is ok (and I expect he gets fed up with that too).I find it hard sometimes if Colin is very quiet, mainly because I think he might be worrying or sad. With regard to grumpiness think that might be the combination of dexamethasone and…[Read more]

Hello Jen,

Again sorry your family has been touched by this condition. My partner colin was diagnosed in October 2011 and has had 7 cycles of treatment. When he was diagnosed I read every website I could find and they all scared me to death. They were very depressing. I counsel myself to read this one only and correspond with friends on this…[Read more]

Hi Jean

Hope all is well with you both. See my post to ann. Colin has been in hospital but out now. He picked up a chest infection. Feels really fed up as he is wondering whether he will ever be fit again. Hope the treatment is going well form your hubby.

Vicki 🙂

Hi Ann and all,

Colin did not got to the consultant yesterday……he's been in hospital:-(

What happened was, last Friday (1st) he started to feel a bit unwell. Mind you he'd not really been right for a week. We had some friends over for a jubilee meal and he was not great all through. Saturday the temperature was going up and down and he…[Read more]

Hello chris

My partner Colin was diagnosed in October 2011. He is also taking dexamethasone. Overall he is not too bad with this but like the others have said sometimes gets a bit grumpy (usual! So what's the difference ?). to be honest I just ignore it. He too has a disrupted sleep pattern and he gets up and reads for a bit, watches tv and the…[Read more]

Hi Jane,

Welcome.:-) My partner Colin was diagnosed on October 2011. He is on slightly different treatment to you but as many others have said it is a very individual condition and lots of variations on the treatment style. With very best wishes, keep focussed and your chin up. All will be well, it's just a bit of a rocky road.

Vicki

Hello Dai

I have read a number of your posts and you seem so well informed. Colins consultant mentioned that he seemed to secret more light chains than pps. He started at 31000 light chains, with pp of 17. 31000 seems a massively high number when you talk about 540 as a high starting point……I do wonder how col could get to that figure with…[Read more]

Hi Jean,

Glad u found the post useful. From memory they gave us some special cream to rub in, so that should help. Radio therapy just sounded scary. The radiographers etc are lovely people and that helped so much. I was so stressed that I was trying to tell the consultant as much information as I could, she must have thought I was a babbling…[Read more]

Hi Ann and Peter,

Hope all going well. Re the radiotherapy. Colin did not lose any hair.his was a one off big dose.we don't know what a big dose actually meant but he had just the one session. As I said they gave him medication for potential sickness/upset tum. Colin said that he felt sick but not enough to have tablets. I recall we were told…[Read more]

Hi Ann & Peter,

Glad all went well today! Thought about you both. I have heard of light chain myeloma. Colins pp level was lower but his light chains were much higher. No one has said what sort of mm that col has but last month the consultant mentioned that he seemed to 'spurt' more light chains than pp's. Don't know what that means in…[Read more]

Ann, very best of luck for Tuesday. Remember to write the questions down!. Colin hasn't been much better today, although we did go to my mums for a short while, which is an improvement. Let's hope he's better tomorrow.

Echo what you say about each day being different, hope it all goes well for you both

Vicki & Colin x

Hi Paul,

I've not heard of this pace treatment but hope it goes well for you and you can then move on to the next stage. Hope you and your family have a great weekend, weather super. Keep those thoughts positive. Remember mind over matter can work. 🙂

You have been so positive so far and remember there will always be other options I am…[Read more]

Hi Theresa and Ann,

Fantastic weather today. Not bad for the uk. It's been a really hard day today. Colin finished his steroids yesterday. He slept all last night and for most of today. Got up for about 5hours in total. Ate not too bad but he said he felt totally wiped out and we both had a few tears and I know he was thinking about what he…[Read more]

Hi Ann,

Good to hear from you. It is amazing how time flies. On the one hand it seems an age and on the other, a lifetime (even more so for Colin!),

Colin dex cycle is 4 days worth at the beginning of the cycle (20 tablets each day) and then something like day 12 for 4 days (same amounts). Colin sees the consultant once a month and has blood…[Read more]

Hi Teresa,

Cotswolds are picture box lovely. The forest of Dean is more rustic as it was mining community (now long gone). She'll love it. Beautiful here at the moment. The good weather can lift the spirits.

I agree if they could just find that drugs to control this condition, like diabetes that would be great.Col is on day 15 of his cycle…[Read more]