New to the group

Hi Paul,

It is good to get to meet you although I do wish it was in a different scenario.

I’m happy to read that you are in good spirits and your mindset to focus on the here and now is definitely the best one in my experience.

This whole process is definitely akin to a rollercoaster that no-one wants to ride and there are lots of times it can feel like three steps forward, two steps back, etc, so look after yourself as sometimes it can be as much a mental challenge as a physical one. Please stick around and keep us posted as you go along and use this space for whatever you need it for. I am 5 years post treatment now so my knowledge is getting a bit out of date but I’m sure you’ll connect with others who are going through what you are going through now, and I am really hoping that everything continues to go really well for you and that the treatment does the job of putting the myeloma back in its box where it belongs.

All the best

Greg

Hi Greg 

Thank you for your kind words and support, it means a lot.

I'm going to find this forum very helpful and will certainly keep updating as I go along.

Keep well

Paul

I'm post stem cell transplant and am having Lenalidomide to supress it.  It's newly approved by the NHS, if you've had a bone biopsy then your probably through the worst, keep your chin up that's the best tonic.  I had a laugh with the nurses but found hospital wonderful at treatment, not so good at care.  That's ok though as they've a lot on.  Mine was a groin pain that wouldn't go away, diagnosed June 6th last year after a bit of dilly-dallying.  Still have plenty of aches and pains, as I write this at 4:30 in the morn it feels like I've been punched in the ribs....but one lady of 87 I met has survived 25 years!

Thanks for taking the time to respond and sharing some of your experience. I'm sorry you're suffering with pain also and hope this isn't to bad.

I'm still early days into my journey and the Myeloma has only affected 1 rib and a small area in my breast bone. I've had my bone marrow biopsy which I'm told is the worst bit so all I'm doing is one cycle of treatment at a time then on to the next. SCT hopefully after 4th cycle is the plan so plenty for me to be positive about.

Again, thanks for taking the time to respond, I really appreciate it.

Hope you keep well and stay safe.

Paul

Yes, my biopsy was excruciating, the rest was unpleasant but not as bad.  I bottled the last art of it but they had what they needed to confirm the condition.  Hospital phoning with latest test results, my levels were 3,000 at the start with control being 25 I believe!  I went up to 129 after 3 months but lenalidomide is appears to be driving it back down.  Will know more later today.....