[valbrewsterParticipant]

Hi Chris,

Have been reading your posts and I understand all the emotions you have and are roller-coasting thru. What I wanted to say is that I was dxd with MM in February 2001, after a routine medical at work. My major symptom was a painful mid back. To date I've had radiotherapy for the back pain, VAD, auto stem cell transplant in November 2001, maintenance program with interferon which had too many side effects and stopped. Had about 18 months before I started off on another road of treatments including Velcade, low dose Melphalan, Thal and Dex. Had 2nd stc in November 2008. using cells harvested in 2001. My maintenance program was Thal. which I am currently off because of awful night cramps, but last blood tests showed no mm present.

I have travelled to Canada, Las Vegas, Hawaii, San Francisco, Caribbean and hopefully next month of to Venice. I've never let the MM become part of my life, of course, I am aware of what I cannot do, my consultants say it is my bloodimindedness that keeps me going, which is true.

When I was first dxd Velcade was still being trialled there have been so many new treatments in the past 11 years and there are more still to come. It is hard to deal with at first but believe me there is a light at the end of the tunnel and the road maybe bumpy at times but you will get there.

Take care and stay positive, love Valerie

[daveoParticipant]

Valerie
I am a newcomer to this site. I have had MM for 5yrs now and after having VAD and a SCT in 2007 I have been in remission until now. On my last visit to the specialist I was told that my paraprotien level had re-appeared and was at 6. This was a big shock and I am now wondering what will happen next.
I was told that I would have follow up blood tests to see if the pp level was increasing and nothing would be done until it became above 30. It was reassuring to see that you were treated in 2001 and are still going strong.
I have been very positive during the past 5 years and returned to work (now retired) and carried on playing golf. I am in no pain and as far as I know I have not had any bone damage.
If any body else is in a similar situation it would be nice to hear from them.
I hope you continue to keep as well as posible and it would be nice to get your thoughts.
Dave

[valbrewsterParticipant]

Hi Dave,

Sorry to hear that the beast has started to raise its head, quite a shock, sounds like you have a good quality of life, like me. There will be a treatment out there for you, but hey, you may not need any for quite a while, just stay positive and keep practising your swing!! I am off to see the Neurologist next week (29th) and hopefully these awful nights cramps can be treated and I can get back onto maintenance treatment. Off to Venice next month for 3 nights and am looking forward to that trip. Take care.

Valerie

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