[BenParticipant]

Hi Andy,

That sounds pretty much ideal in terms of having a trusted consultant monitor your treatment. Can I ask, no SCT because they don’t feel your PP count has dropped enough? Does that mean you have been on constant treatment since you were diagnosed without a break?

Cheers,
Ben

[BenParticipant]

Hi Maureen,

Great to hear that Ian is doing well, i’ll post a report on the Marsden experience when I get back. The paperwork for the consultation arrived today and explains that treatment is planned by a team of healthcare professionals – surgeon (suspect that’s less critical with our brand of cancer other than spinal repair), medical oncologist, radiotherapist, radiologist plus a key worker (specialist nurse who acts as point of contact). It also states the team meets regularly to discuss your individual case based on test results. OK that is probably what we are all meant to get where ever we are in the UK – but to me that sounds a lot more personal than my current experience. I’ll keep you posted.

Not sure if you are already aware but there is a webinar being delivered this week on Thursday by the head of myeloma research at the Marsden. Could be interesting.

Cheers,
Ben

[BenParticipant]

Since my original post, I have a consultation scheduled at the Marsden in early August for a 2nd opinion and to get an idea of how treatment might differ there. I have also been told that I could in theory split my treatment between two hospitals, for example, join a clinical trial at the Marsden (which might not be available to me locally) whilst having my basic treatment (monthly zometa infusion) at my local hospital. I’ll post the findings on here for anyone who might be interested. It seems to me that unless you happen to live near a centre of excellence, then you need to travel to access the widest range if clinical trials. That said, I am still part of Myeloma XI and at every turn I have been randomised to either the standard NHS treatment or no further treatment. So clearly trials aren’t quite the shining path to chemical nirvana that i’d have liked!

Maureen, i’m glad your husband got his SCT and I hope he has a good response, mine has given me almost 18 months of drug free stability (though never reached complete remission) which has been fantastic.

Cheers,
Ben

[BenParticipant]

Thanks for sharing your experiences Jeff and Avril, it sounds like every hospital is different, I had thought the NHS would have some sort of protocol as to how many consultants a patient could see in rotation. Avril, I am really glad to hear you’ve got that personal contact, hang onto it! Can I ask why you declined the SCT Jeff? I ask because a myeloma friend of mine is considering the same at the moment. How was the velcade? That looks like my next stop as i’ve had a PP count rise over the last 3 blood tests, only small amounts but its the trend that seems to count.
Stay well both of you,
Ben

[BenParticipant]

Hello Karl,
I don’t race, but after a decent stretch in remission I have started to bike again and am setting up a new bike to make life easier on my repaired but weak back. I originally fractured 9 vertebra and so I found my rigid road bike too painful, tomorrow i’m collecting a new mountain bike with front suspension and i’ll add a thud buster unit to the seat, hopefully that’ll give me a smooth ride. Since my back surgery i’ve been back into various sports, kayaks, paddle boards and bikes – aside from bulging discs from overdoing some kayaking, its been fine.
All i’d say is warm-up carefully and see if it hurts, there are a few guys on the under50 site who are back to running which is far more abrasive to bones and joints than cycling i’d say.
Life’s too short not to try right?
Ben

[Author]

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