Hi Christine,

Sorry about your news. Myeloma patients all seem to be so different so it’s hard to know the speed at which things develop.  I was diagnosed in August 2013 with free light chain myeloma, but told the month before I definitely didn’t have myeloma! Think it can take a while until they know what to look for.

Anyhow, about the bone…[Read more]

Thanks Pat,

I had to ask to be told my genetic type which turned out to be high risk. I think it should be available routinely with bmb results but I have found this isn’t always the case. I understand it is an expensive test to perform, so wondering do labs have the final say. Worrying, especially when consultants specifically requests this.

I…[Read more]

Hi Pat,

Yes very difficult to know. It seemed to me that my bone changes had happened within a year when I relapsed from initial treatment, and “watched and waited” for 6 months before 5 months of treatment to prepare for sct. The delayed sct was the protocol for the padmac trial. Comparing CT scans 2 months into watch and wait and another post…[Read more]

Hi Ann,

We are all so different aren’t we. Thankfully I’ve had no illness so good overall. Good luck with the bmb results. I’ve had about 8 of these as quite a few were part of the clinical trial. I definitely recommend sedation. The first without sedation was okay; the 2nd without sedation and same doctor doing it, was definitely not. I was so…[Read more]

Hi Ann,

We are all so different aren’t we. Thankfully I’ve had no illness so good overall. Good luck with the bmb results. I’ve had about 8 of these as quite a few were part of the clinical trial. I definitely recommend sedation. The first without sedation was okay; the 2nd without sedation and same doctor doing it, was definitely not. I was so…[Read more]

Hi Ann,

We are all so different aren’t we. Thankfully I’ve had no illness so good overall. Good luck with the bmb results. I’ve had about 8 of these as quite a few were part of the clinical trial. I definitely recommend sedation. The first without sedation was okay; the 2nd without sedation and same doctor doing it, was definitely not. I was so…[Read more]

Hello,

I stated Ixazomib, lenalidomide and dexamethazone on a named patient programme in October as I have high risk myeloma and Amyloidosis. Mind you, consultants themselves had different opinions on if I should have qualified, one saying it was doubtful and another that I definitely met the criteria. I have a feeling the result is partly down…[Read more]

Hello Brian,

Shock news isn’t it. I guess on the good side of Myeloma, there appears to be a lot of research into treatments, with new types coming along regularly. I was diagnosed in 2013 and my initial treatment was to take part in a clinical trial, Padimac. I would recommend considering clinical trials, as they get access to the latest…[Read more]

Hi Susie

What you have described is so unacceptable.  Why not, at your next visit, insist to see your consultant. Have someone with you who will help with the insistence. If this doesn’t work, but it should, is there a different consultant you could move to? One who you know from other patients has a professional caring attitude?
I myself moved…[Read more]

<div id=”yiv2894998336yqt86167″ class=”yiv2894998336yqt8355339089 yQTDBase” style=”-webkit-tap-highlight-color: rgba(0, 0, 0, 0); box-sizing: border-box; color: #000000; font-family: sans-serif; font-size: medium; background-color: #fffffe;”>
<div class=”yiv2894998336gmail_extra” style=”-webkit-tap-highlight-color: rgba(0, 0, 0, 0); box-sizing:…[Read more]

Hi Rebecca,

Thank you for your very informative reply. I plan to seek advice from the MUK helpline tomorrow and then call my consultant.

A bit of background: During my 2nd cycle of Lenalidomide and dexamethasone I got a high temperature and was admitted to hospital. After 2 days in, 1 day at home and 6 days back in with high temperature again,…[Read more]

Hi Rebecca,

Thank you for your post which I definitely found comforting. I was harvested in Feb 2014 so won’t have cyclophosphamide now to reduce FLC further. I really want to change the plan and delay SCT start to give best possibility for long remission but it may not be easy. I haven’t heard many stories of patients influencing their care…[Read more]

Hello there,

I have a similar question but regarding the ideal level of free light chains (Lambda) before starting SCT as my type is light chain myeloma.

In January I was started on Lenalidomide and dexamethasone as I began to relapse in June 2015 after Padimac induction which completed in December 2013. I asked if I could have Velcade which I…[Read more]

Hi Sue48,

If you call 0800 980 3332 you could speak with one of the Advisers who should be able to help you.

Regards,

Jan

Hi Michelle,

That is fantastic news! Stories like yours give us lots of hope.

I met a lady at the Myeloma Information day in Northern Ireland who had been diagnosed with Myeloma 22 years ago, and she is doing well. That also was a great story to hear.

May your good health continue for a long long time! (and thanks for the healthy food…[Read more]

Hi Andy,

You have valid points. Any decision needs to be considered in light of individual circumstances.  I have always, even pre diagnosis, taken out travel insurance mainly with the thought of it protecting me against travel company issues including cancelled flights, lost baggage, etc. Insurance companies even try to wriggle out from these…[Read more]

Hi Robbo,

I was diagnosed in August 2013 and have had 4 BMBs so far.

– The first I had no sedation but a lovely Nurse chatting away and I’d say no higher than 4/10 pain.

– The second, same Registrar performing it but a silent Nurse. Very painful at 8/10 and I was in great stress. Registrar thought maybe due to scar tissue from the 1st one.

-…[Read more]