Dear Dai

I absolutely agree with you. Why didn't they offer you the GCSF injections to boost your neuts? Apart from the patient in the waiting room whom you met and is also on Bendamustine, you can add my name to the list as well. I was admitted in late February with a high temperature and low neuts . I had finished the treatment with…[Read more]

Dear All

Haven't posted for a while so a bit of recent history – I'll try to keep it short. I finished a course of treatment in December,after I relapsed after 5 years post SCT. My pp's had levelled off around October and the Prof didn't think the treatment would do much more for me. He was right. since finishing the course with my pp's at 18…[Read more]

Dear Dia

I have just finished taking part in a National Bendamustine Trial so I thought I'd let you know how I got on.
I have to say that the main side effect for me was how tired and weary it made me feel. A bit of nausea but nothing that the tabs couldn't sort, No sickness,but I did have to reduce the dose of Thalidomide as that did cause…[Read more]

Hi Mavis

I'm sorry to hear about your 'difficulties' at the moment. There is nothing worse than constipation except from [i]pain[/i], in my estimation. The first makes you feel wretched, do and the second can drive you out of your mind.

Please, please, whatever you do don't give up your pain killer/s without first discussing it with your…[Read more]

Hi Scott

I'm down for 6 cycles – each one being 28 days. I have chemo on days 1 and 8. I'll finish just in time for Christmas!!(sorry about the c word so soon)

You're so right, each one of us is different and so our reactions to the treatments will be a bit different too.

Stay well
Rosie x

Sorry Scott, it's either me and fat finger syndrome or there's a gremlin in my pc…..! Where was I? Oh yeah, I feel now (cycle 2) the way I felt at the end of my CDT (cycle 6) i.e.weak++. Probably just me we are all different. I have a very dry mouth and have been told I could experience odd bruising as platelets tumble somewhat. Apparently it…[Read more]

Hi Scott

I am on the MUK1 Bendamustine trial but as I'm only on cycle 2 there is not a lot I can tell you as I'm still getting to grips with it. My medics told me that they are getting lots of good reports on it's performance in hammering the pp's and light chains – let's hope so! To be honest I feel like I've been hammered myself, but I am 5…[Read more]

Hi Tom

Don't know how I've missed this joyous thread!!! (I'm getting lost and missing posts…guess I'm truly an old woman!)

Well done you two, trust you are still celebrating your double whammy plus had a good time with the grandchildren. They really give you a lift don't they – my energy seems to rush back when I see them so they are…[Read more]

Hello Helen and Mavis

Sorry to lump a reply in this way, but after reading Helens' post, lost where I'd read yours Mavis….. sign of the times!

But I wanted to say that I know how you must be feeling. I agree with both of you as I had Shingles 2 years ago which came along with a gastrointestinal 'bug' which was not identified. I was in…[Read more]

Lovely news Dai – so good to hear that you both have enjoyed the Jubilee weekend and what a way to remember it! It gives you such a lift to be almost normal again doesn't it. Positivity in action. Well done Dai and Janet.

Kindest regards

Rosie
xx

Hi Andy

Just caught your latest post -'blood letting and result getting', love it, it did make me smile:-D

I can only endorse what David said about keeping going, and am so pleased for you that your pp's are heading south at last. R&D sounds just the ticket for you, same as it is for Dai.

Enjoy your break and stay well

Rosie…

Hello Dai

It's always good to read your posts. I too shed a tear reading your words, but for me it's your absolute honesty and gift of sharing your everyday feelings that means so much, so thank you.

The reply you sent Gail on the 17th was another one that had me crying – but in a good way. It was so, so true and very uplifting, Yep -…[Read more]

Hi Andy

Great news re bloods, keep it up! Just don't start dragging your knuckles on the ground through eating too many bananas.

Don't know why we can't have Entinox (?sp)….Gas and Air) for the horrid BMBs'. My last one was the best so far, the lovely lass kinda rocked my hip as she was doing it, and kept telling me to 'breathe away'.…[Read more]

Hi Gail
Just read your last post and had to let you know how much I'm feeling for you right now. I have had mm for nearly 6 years now and remember so clearly how frightened I was in the beginning. My lovely hubby was – and is – always there for me. We cried together a lot about this wretched disease that threatened to bring our lovely life to…[Read more]

Hi Wendy, Thank you for replying, it's so kind of you, and it really does help.

I don't mind telling you my age – I'm 65 and I think you're absolutely right in what you say about age vs treatment options. When I had my SCT the upper age limit was lower, and as I have passed that, I just didn't consider it would be feasible this time around.…[Read more]

Hi Mari,

Like Eva, I too would be interested in the new protocol, if you do find anything out. I've been told that I'm relapsing and I'll probably have to have some 'more treatment' by the end of the year. I was astonished that another sct might be on the cards as I'm 65 and thought I'd be too old. I was expecting maybe Velcade, but not…[Read more]

Thanks for the welcome Andy. I am kinda familiar with your journey so far….I have been lurking for a couple of months!?

One of the things my consultant and his team stressed to me when MM kicked off, was to try not to worry too much about the level of your paraproteins. Easy to say I know, 'cos don't know about you, but when I was first…[Read more]

Hi Carol nice to hear from you! Don't know about a seasoned campaigner, I just did what the docs told me was best for me. I won't be so wimpish in the future. I have learned a lot more from this site and the experiences of others, since beginning to visit a couple of months ago. I wish I'd done it before, but better late than never eh?!

I'm…[Read more]

Thanks Tom – I'm shy Tom, I'm shy! It took me a long time to figure out what, if anything I could possibly say that would have been any help to anyone, as all the responses seemed to say it all.
Took me a while to realise that if I'd too, posted a reply, it might have helped someone,even if it was just repeating the same words of comfort and…[Read more]