Jet

I am so sad and upset to hear this awful news. I followed Wendy’s blog and was aware that she hadn’t posted for a while. I had thought of her recently and wondered how she was doing. I had always admired how she still got on life, enjoying new adventures. I am glad you and she were able to do that. Wendy was a wonderful writer. She had that…[Read more]

Hi Robert, I am currently on cycle 6 of VCD, after relapsing.

How wouldcyou describe the pain you are experiencing?

I’ve had pain in the back of both calves and knees intermittently but over the past few weeks, mainly in the back of my right calf and almost permanently. I’ve never thought that it might be peripheral neuropathy though. I assumed…[Read more]

Hi Amanda

i am 46 and was diagnosed 4 years ago. I had 6 cycles of CTD and reached complete response. I have delayed having a SCT although I did have my stem cells collected. I had to push for this option though. I think I made the right choice. But without a cytogenetic analysis of my bone marrow, I didn’t know if I was high risk or not so it…[Read more]

I think it’s the steroids that cause the sensitivity to sunlight. I would err on the side of caution and avoid any unnecessary chemicals whilst on treatment. Absolutely nothing wrong in your mum still wanting to look her best. One thing though, since being in remission and having various treatments at beauty salons, I’ve had some problems when…[Read more]

My understanding from talking to one of the myeloma UK nurses today is that although the IMWG is highly respected in the UK, the new guidelines are unlikely to come into practice with immediate effect. More likely, they will filter through over the next year or so. For this reason, there is no reference to the new guidelines in the news section of…[Read more]

Hi Helen
I’ve just read your post about your diagnosis of asymptomatic myeloma rather than MGUS. I’m not a doctor, but If your paraprotein level is 8g/l rather than d/l, I’m struggling to understand why you are not MGUS, in view of your other blood results. Have you asked for a second opinion? Maybe talk to your GP about it?

Best wishes
Alice

That’s very interesting, Michelle and congratulations! I’ve heard of pp continuing to drop in the months after SCT, but not after such a long period as yours!

My situation is that I achieved a complete response after 6 cycles of CTD. I didn’t have SCT and until 3 months ago had been in CR for over 3 years. However, my last two blood tests have…[Read more]

That’s very interesting, Michelle and congratulations! I’ve heard of pp continuing to drop in the months after SCT, but not after such a long period as yours!

My situation is that I achieved a complete response after 6 cycles of CTD. I didn’t have SCT and until 3 months ago had been in CR for over 3 years. However, my last two blood tests have…[Read more]

Hi Tom

Are you absolutely certain about the pain? I only ask because I’ve read your blog previously and you mentioned how you start to feel pains, real or imagined as you come up to your hospital appts. Are you coming up for a review by chance? I’m not trying to make light of the situation because I absolutely know what it’s like to imagine all…[Read more]

Always a bugger, I find, when blood tests follow a good week of drinking fine wine 🙁 ah well, such is life!

Hi Emma

I’m not as young as you – I’m in my mid-forties. Before diagnosis 3.5 years ago, I was working full-time. I was subsequently signed off by my GP and have not returned to work since. I haven’t had an SCT because of other complications, but I managed to achieve remission on frontline treatment. Although physically I’m okay (am fortunate not…[Read more]

I a very sorry to hear of Eva’s passing. I recall that she was a very informed patient and made sure that she was getting the best treatment that was available to her, even though that meant flying down from Scotland. I remember being very much in awe of her dogged spirit. My thoughts are with her husband. Xx

Hi Lisa

Thank you so much for posting this.  It is very relevant for my situation. I was diagnosed just over 3 years  ago, aged 42. My daughter was 4 at the time and in her first few weeks of  Infant school.  We have never told her anything. I was fortunate to get through CTD with minimal side effects. She was too young to even notice why I’d sto…[Read more]

I’m an occasional  lurker. I have to be honest and say that the reason I don’t contribute anymore is because of some “forthright” replies I received on a topic that the responder clearly didn’t agree with or had opposite views. They would have done better to have kept quiet, in my honest opinion. That and the new forum format has stopped me from…[Read more]

I was diagnosed 3 years ago and have only had CTD. I am currently treatment free and in complete remission. the exception is monthly zometa. I have no bone issues. My understanding is that I have zometa because of its anti-myeloma qualities. Apparently, for this reason, I will be on it indefinitely, rather than just 2 years, which is the norm, apparently.