[meganjaneParticipant]

My husband, Phil, was diagnosed with MM in May this year. Phil had been suffering from rib and back pain on and off for a while but we thought it was just normal aches and pains. It started getting worse in Feb/March this year and after what seemed an endless number of tests we got the worst news imaginable, we were hoping it was just a vitamin D deficiency! Phil is only 43 so I had convinced myself he was too young. It has been a roller coaster since the diagnosis as Phil was admitted to the Royal London in June as the doctors were concerned that his femurs might shatter. Phil had two operations, one on each leg, to nail the femurs to prevent breakage. Things were tough for a few months but Phil is now off the crutches and has today started his fourth chemo/dex/Velcade cycle at St. Bart's in London, it is the PADIMAC trial.

I wanted to thank the forum members for all your posts on this site. I have found it very helpful to read them and to hear of everyone else's experiences. It has been helpful to know that we are not alone in this and it is wonderful to have such a great source of information.

Megan

[MicheleParticipant]

Hello Megan

I was only 49 when I was diagnosed with MM in May 2011, but it seems that no age is too young anymore. 🙁

I'm glad you found the brilliant site and have found all the forum chat so useful.
Come on anytime to join in with good or bad news. I personally feel that to be able to share experiences and help others also helps me.

Look forward to hearing about Phil's recovery and improvement!

Take Care
Michele

[tomParticipant]

Hi Megan and Phil

A warm welcome to your site, ask away and just remember no Q is too silly or daft we have all been through it Like me as a MM or one that is a carer.

Good Luck in Phils road to remissin.

Love
Tom "Onwards and Upwards" xx

[jmsmythParticipant]

Hi Megan and and welcome from me. Michele is right "a trouble shared is a trouble halved". This forum has been a God send to me. I have had help, support and above all friendship. My best wishes go to you Nd Phil – good luck

Love Jean x

[AliParticipant]

Hi Megan

Welcome! Sorry you have had to join us, but this site has been a real help to me – Im pleased you have also found it of some help.

Its my Mum with MM, she was diagnosed in November 2011 aged 57 and has just had a stem cell transplant.

I too look forward to hearing about Phils recovery 🙂

Love Ali xx

[meganjaneParticipant]

Thank you all for your replies.

After the initial shock it is nice to know that things can get better.

Phil's paraprotein level started at 34 and after the 2nd round of chemo it was down to 16 so fingers crossed the results will have dropped again after the third round (we will find out next week) and will continue on a downward slide with the fourth round that Phil is doing now.

Megan

[MicheleParticipant]

Hi Megan

If Phil's PP levels have more than halved in 2 cycles I'm sure they'll continue their downward slide.
My PP levels were 45.6 at the start and they dropped to 16, 7.5, 3.5, 1.5, then just showed a trace.

As you can see, there was a massive drop after cycle 1 and after that it appears to slow down, but when you think of the drops in percentages they were still coming down fast and furious!

🙂

[VickiParticipant]

Hi Megan and Phil

Sorry you had to join the club but welcome anyway. My partner Colin was diagnosed age 55, so older than Phil but the shocked was like a train hitting us!. Colin had back pain and a random blood test revealed the worst case scenario. We did not even know this mm thing existed, and frightened ourselves silly with all the other websites and the miserable information them!

That said life does change, however the positives are the medical teams are great and colin had 7 cycles on myeloma 11 trial and now waiting an SCT end September 2012, all being well. Hope all goes well for you guys….any questions if we can help we will 🙂

Vicki and Colin x

[meganjaneParticipant]

Hello Michele,

This is why I love this forum, hearing the good news from others helps me keep a positive outlook, I know MM is different for everyone but I think a positive attitude helps and knowing that things can get better makes it easier to deal with. Thank you for sharing.

Megan

[meganjaneParticipant]

Hello Vicki and Colin,

It is life changing and for us the initial shock was quickly followed by two operations for Phil to fix his femurs, we have had one thing after another since the diagnosis but now things feel like they are more under control and we are starting to understand things more. Like you we had never heard of MM but we are getting on top of it. I still find all the jargon confusing, light kappa chains, bence jones, etc but I know that when I need information I can turn to this website and of course the discussion forum.

I hope Colin's SCT goes well.

Megan

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