Hi Maureen
Hope Ian is still on the mend. It’s so difficult to be know who to trust and what to believe. Colin’s immune system has gone down to 0.15 so he virtually doesn’t have one! But they have let him home with gcsf! Bang goes Colins chance of coming to the wedding. My mum is going to stay with Colin and I an going for the most part of it (…[Read more]

Hi there all

The consultants haven’t mentioned a second Sct for ages. They didn’t really give a reason, just saying that they wanted to,get the condition under control first and then we will see, but it was one of those we’ll see that I had no faith in. Trouble is Colin has had Velcade which didn’t work (3 cycles and the light chains went up).…[Read more]

Simon

So pleased you were able to let your feelings out. It’s definitely not easy. Colin was very self contained. He was very very anti counselling, but I persuaded him to give it a go especially leading up to sct. They were excellent and he hugely benefitted from it.he still uses the techniques they gave him and they work. Wishing you all the…[Read more]

Hi there

It took 2 weeks when Colin had his. They had to send the sample over to Birmingham or bristol due to the special test equipment required. Hope the results are good for you

Vick and colin

Hi all

Just catching up with some of these posts. Andy how on earth do you manage to do all this travelling and keep up with the meds and not be sleepy? Colin has pretty much do nothing but sleep and sleep since Sunday morning. He’s eating well but little energy for anything else. I know this mm is very individual but I wonder how comparatively…[Read more]

Hi Maureen

Those rigours are frightening aren’t they! Colin had those and we didn’t know what they were to begin with! Colin did have to stay in hospital for that. He went in last Wednesday eveing and they gave him bags and bags of fluid all night to hydrate, then the chemo which was 30 minutes and then bags and bags of fluid again, with a…[Read more]

Hi helen and Andy

Hope you are both keeping well. Helen glad to hear pomalidomide is working for you. Colin’s consultant was quite negative about it. As far as I am concerned if it works for you I hope it’s an option for Colin is he needs it.

Just going through the hoop. Colin got little success with bendamustine, although I am sure his light…[Read more]

Hi Maureen

Just tuned in. Glad Iain got through the SCT. Colin went back in too the first time round. He was in for a week. He was fine too. Fingers crossed for a long remission. Hope you are ok too Maureen 🙂

Vicki and Colin x

Hi all

Update on Colin’s bendamustine treatment. It’s not working! After cycle 3 his light chains have gone down from 7000 to 6500, so given the toxins they had expected a better response. So Velcade not worked, bendamustine not working. So he’s off that treatment.

What next, no treatment for a month or more due to bone marrow taking a hammering…[Read more]

Hi Maureen

Sorry to hear Ian’s SCT delayed. As you say though better safe than sorry. Colin and I have both had the flu and so his third cycle on bendamustine is delayed a week. Debatable abouth whether it’s working. Cycle 1 it went up from 7000 light chains to 10000 but not sure if it really went up as they had no measurement after the Velcade…[Read more]

Hi helen,

Thanks for the information. It was helpful. By the way Colin has no pp detectable. He just has light chains only. We have bt had any results from cycle 1 yet. What we do know I’d that bendamustine is like being hit with a sledgehammer, even with the steroids he has slept for most of today. We are told that’s normal. Just hoping that it…[Read more]

I am so sorry to read and hear this news, it’s shocking. I can’t believe you have had to suffer this. Thinking of you at a sad and distressing time

Vicki

Hi Jacqui

Hope you get some good news with geoffs treatment. The specialist nurse was aboslutely brilliant. She was informative and encouraging. We felt like two different people when we came out of there. She is definitely worth a chat. She has time and doesn’t mind what questions you ask. Would definitely recommend it. We should meet up some…[Read more]

What a difference it makes. We saw the specialist nurse today, Colin has started cycle two. She was amazing, positive, practical, informative, discussing options with out minimising what is at stake. We felt like two different people coming out of the appointment today. It gave us both renewed positivity and willingness to look to the future.…[Read more]

Yes absolutely endorse what carol,was saying, drink plenty of water and other drinks to keep the kidneys flushed. The light chains can cause problems with the kidneys so it’s importsnt to drink lots.

Vicki and Colin x

Hi jells,

Yes I would endorse what any says, it’s much better to disclose and being totallyopen means there is no room for argument or ambiguity,

Vicki and Colin x

Hi Karen

Just catching up and wondering how things are going? Does your get measured by pp only or do you have light chains as well?

Thanks

Vicki

Hello Anthony

Not had any experience of the pp shooting up but Colin has had revlimid and it was very effective for him. So good luck with that. It’s such an individual condition isn’t it!,

Best of luck

Vicki and Colin x

Hi jacqui

I will private message you…..colin isn’t happy I posted this as he thinks they will be cross and his treatment might be affected. I mentioned no names but it was a very difficult day yesterday. I reckon jeff must be doing ok if they are pressing on to the third cycle. Must be working! That’s good. The weird thing is that Colin has no…[Read more]

Hi all

I see that you’ve all tried a variety of treatments. Did fatigue figure a large part of your daily lives. Colin is on treatment at the moment and had only the first cycle but what we don’t know is whether it’s the mm that is causing the tiredness or the treatment….. Colin was bemoaning the fact that he get so tired after doing anything,…[Read more]