[MariParticipant]

Hi Glenn

I am sorry to hear that you have been diagnosed with MM and that you and Jacqui are facing sure changes to you life. My husband Stephen was diagnosed in January 2010 when the tumour on his spine caused compression that prevented him from walking, resulting in a operation, sadly all too common in myeloma sufferers. He was 53 and like you was fit and strong, swimming cycling sailing and holding down a demanding job. As you can imagine it turned our world upside down and I found myself caring for him in a way I never imagined possible. He too slept in another bed, or even a chair for some time. 2010 was a difficult year whilst he went through the treatment, but just before Christmas he was told he had achieved complete remission. As a result 2011 has been a wonderful year for us, he completed London to Brighton cycle ride (90K) in June, we had a wonderful sailing holiday in August, he drives and works full time again. In short our life has returned to nearly normal, well as normal as possible with myeloma in the background! However tough things are now, they will get better for you I am sure. Your fitness prior to diagnosis is in your favour and your positive attitude will carry you through. We both struggled with what had happened to us and had specialist oncology counselling by referral from his consultant which helped immensely. Hold on and things will get better for you both.

I wish you both well for the journey you are about to face, there will be some light at the end of the tunnel,

Much love, Mari xx

[glenn54Participant]

Hi Marie
Thank you for your wonderful message.
It has given Jaqui and I a lot on encouragement going forward.
It sounds like your journey has been a similar one, to which we are embarking on at the moment.
I, however, at present have been luckier than Stephen and have not suffered from a compressed spine.
I have though been told that my vertebrae is very fragile due to the mm and I am being given Zometa to help strengthen the bone, as the consultant has described the vertebrae as being like match boxes, very soft, instead of hard bone.
I have had a new wheelchair delivered this morning, one which is going to give me more independence, up to now, Jaqui has been parking me in a corner somewhere whilst she has a bit of retail therapy.
Just another small positive step on the journey ahead.
The news about Stephen's 90k cycle ride, again has given me a lift, as I and a few friends were riding the full length of France in the summer of next year, I was cycling approximately 30 miles a day in training just days before we found out about the mm.
Next week I have an appointment at Clatterbridge, concerning the latest news on the tumour on my spine, hopefully the radiotherapy will have helped to alleviate the current pain I am experiencing at the base of my spine.
Thanks again Marie for your positive story, I hope you and Stephen continue to enjoy a wonderful and normal life together.
Glenn xx

[adamsp41Participant]

Hello Glenn…sorry to hear that mm has affected you…I was diagnosed with Asymtomatic Myeloma in Sep08( I was 54)…which became "active" in Jul10 with acute kidney failure…had 5 cycles of CRD (Aug -Dec ) and a SCT in Jan11…which has put the mm in a status of Stringent Complete Remission …I am now on the maintenance programme of Revlimid…I cannot comment on any back pain as my mm decided to knock my kidneys over ( down to 10% efficency at the worst point now at 46% so can't grumble)…but regarding the mental battle I really struggled early on and took a little time off work to "recover"… all the usual questions kept popping up and I have found that without the support of my wife and immediate family things may have been a lot different….also I find it vital that you have 100% confidence in your medical team ( which I cannot praise highly enough )..it seems that you have total confidence in them which I find to be a vital reassurance in the journey…I still have severe fatigue and tiredness and still have "dark days"…but as time goes on these become easier to handle….wishing you all the best luck in the future…Phil

[glenn54Participant]

Hi Phil
Thank you for your positive thoughts, they are really welcome as I have only just completed my first cycle and Jaqui and I are still coming to terms with, not just the illness, but the changes it has made to our day to day living.
I am hoping to have SCT later this year, if the chemotherapy allows.
Would it be possible for you to tell me what you had to endure whilst having the treatment, and also what does stringent complete remission actually mean, as opposed to remission or complete remission?
Thank you again
Glenn

[adamsp41Participant]

Hi Glenn…post SCT my medical team have told me that there is no visible myeloma detectable for them to be able to measure…this is SCR (as far as I am aware)…as regards remission and complete remission I am unable to comment accurately…perhaps contacting myeloma uk infoline for advice would be a good option…regarding my SCT (remembering that everyone has a different experience)I had a fairly rough time with the process and was unable to eat or drink for approx 10 days due a bad case of mucositis …but I have read on this website that some patients have coped fairly well with SCT so it looks like it's luck of the draw… I was in hospital for 18 days and once my bloods results started to improve my recovery was fairly rapid…8 weeks post SCT I attended a Myeloma uk Info day at Bradford…and the Myloma uk staff who we lunched with, were amazed that I was there ..as I have said previously fatigue and tiredness are my main problems…hope this helps…stay safe…Phil

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