Hi carryann,

Infections 🙁 Colin did have a lot of them and we sort of knew when it was time to go to hospital. When there are children around its difficult cos they pick up all sorts, but as Tom said they are the grandchildren. It can be isolating to suddenly stop doing something because of mm, and that it so frustrating. We did not have many…[Read more]

Hi carryann

Hope you are feeling ok. You really have been through the mill. I found that making notes throughout the cycle prompted questions to ask the consultant, for example if Colin felt very sick, couldn't sleep in the night, got emotional or grumpy on the dex, went dizzy or had cramp in his hands. Usually asked things like is that normal,…[Read more]

Hi Vanessa

Sorry I can't really help on the detail. I know that there are lots of thoughts about acts, whether even they are the best route of using I think what they call novel agents in treatment, and there are lots of them being tested. At the moment though I think the balance is erring on the side of scts being a good option. I don't know…[Read more]

Hi jean and frank,

Sorry you've had no date yet…..hope you are both keeping well :-). I'm worrying Colin has relapsed before we've even had his bone marrow assessment results. This mm worry messes with my brain I reckon 🙁

Before his sct Colin had not treatment from mid July til he went in for sct end of October 2012 but they never…[Read more]

Good. Luck tebebe

It's always worrying when you start treatment. My partner and I were very worried but we both new it had to be done because it was the only option to best the myeloma. It was a battle between the tablets and feel well or not so well but keep battling 😉

Our thoughts and prayers are with you 🙂

Vicki and Colin x

Ann and Pete

Great news with the stem cells…..that prelixafor is wonder drug isn't it! Glad to hear things are on the move, but like you say it's scary all the same. Keep up posted on how things are going, and like I said before although an individual journey I'm sure there are common questions we all ask and worry about so ask away 🙂

We…[Read more]

Good luck joe and thank you for your efforts. Mm needs to be on the map so that it can be reclassified into a critical illness not a terminal one. Sadly not in time for your dad but you are a hero to carry on doing what you are.

🙂

Hey faith

Well done you, it's good to hear stories like this. It gives me such hope for my partner Colin who had his sct in oct/nov 2012. Keep going and good health to you 🙂

Vicki and Colin x

Hi Dai

Sorry to hear you are having a little stay in hospital! The hospital food can't be the attractions and you must get home as there is rugby on the telly at the weekend! Janet will have a nice meal for you,relax chill and wait for cycle three….keep going Dai we rely on you for updates 🙂

Vicki and Colin x

Hi all

Well you guys made me laugh! No gas and air, southern softies! 🙂 :-). You might be right, but I won't mention it to Colin as he's still grimacing at the thought of the bmb and we are still awaiting the results which is nerve wracking!

Thankfully the snow has gone but its v cold, not as much as up north! I'm trying hard not to fuss…[Read more]

Hey Dai,

Good news re the side effects! Lets hope the bloods are good, out of hospital is always good 🙂

Vicki and Colin x

Daniel

You are a star! Also so glad to hear that your dad is making some improvement. The medical teams are great at what they do so you both have faith in them, along with the drugs and things will improve :-). Keep talking on here dan it really helped me when I was so worried about Colin and everyone's supportive and helpful.

Keep going…[Read more]

Hi carryann.

Welcome to the forum. My partner Colin was diagnosed in October 2011 and had an sct in November 2012. The key thing I would say is to stay positive, ask as many questions as you need to, be particular about taking your meds and recording how you feel and what you eat. We tracked this consistently so when we went to see the…[Read more]

Hi Dai

As usual a very comprehensive response about what's occurring elsewhere in the US and encouragement for others. I will catch up on your post but hopefully things are going well for you?

Vanessa, hopefully some of these posts are giving you and Stewart encouragement? We fully understand why Stewart might get low, as they can't do what…[Read more]

Peter

Glad to hear you have got through your sct, well done you! You have always been so positive and clearly that pays dividends! Colin lost all his hair, not eyebrows though. Since coming out of hospital the last month has seen a real growth spurt in the hair, beard growth etc, so it will come. Hopefully you will continue us to improve slowly…[Read more]

Hi Megan,

Glad to hear you and Phil are doing ok. That's great and no infections! Don't worry about being trigger happy with the thermometer……I still am :-)! With regard to the fatigue and sleeping through the night. Colin still gets very tired, it seems to go in fits and starts….he does a little bit too much and the bang, wiped out for a…[Read more]

Hi Tom,

Yes we did. Typical out here in the country a foot of snow…..22 miles away in town, nothing 🙂

The bmb was the usual painful numbing affair, with gas and air…..and a cup of tea for both of us afterwards! Colin had his tea and biscuit because he had all the physical pain, and mine was for the mental anguish and the nurse feeling…[Read more]

Hello Vanessa,

This disease is a shocker isn't it! And you both with a baby! :-/. Hey it is hard. It's difficult to know where to turn I release that, my partner Colin was diagnosed aged 55 and he'd not had anything wrong up until some back pain emerged, I too like you have felt mad, cheated for him and me, very very sad and sometimes not…[Read more]

Hi graham,

Welcome to the forum! 🙂 my partner Colin was diagnosed aged 55 in October 2011, we went through the induction treatment, that's the chemo tablets, steroids and a tablet called revlimid for 21 days of the cycle. It was tough at times, he felt good sometimes and poorly others. He did manage to go to work and other times work for…[Read more]

Yes Tom, I echo all of the thoughts above. I read that staging is not used any more!

No one mentioned staging to us and as far as I'm concerned I don't want to know. Just treat the mm and get it out of the body! Lots of effort but let's keep it going! I do understand how it's worrying though as I do enough worrying for the both so us…[Read more]