[bobjankersParticipant]

Hi Mavis.

 

Thanks for your reply.

 

My consultant has done a great job with me and I believe that it’s standard practice to stop the bone strengthener treatment after a set period of time.  However, it does seem like a coincidence that the withdrawal of the Zoledronic acid (Zometa) treatment and my subsequent relapse are indeed linked. I don’t know if this is the case but it certainly seems suspicious and will be asking my consultant directly about this next time I see her.

 

I’ve done some digging on the internet about this and worryingly read that “…the risk of progressive bone disease as a result of BP (bisphosphonates (such as Zolmeta)) discontinuation is a major concern“.  See the attached document for the full breakdown.

 

That said, I would like to know if anyone else has suffered a relapse after finishing their bone strengthener treatment?

 

All the best with your remission.

[bobjankersParticipant]

Hi finn.

 

Thanks for your reply.

 

I assumed that Gene-Therapy wouldn’t be immediately available (which is why I’m going down the well worn path of Revlimid (lenalidomide)) but since this novel technology is moving very fast I expected a UK clinical trial to start imminently, or at least be planned off the back of the seemingly miraculous case of Layla.

 

Reading up on it I see that the treatment was developed in collaboration with New York biotech company Cellectis.  *Interestingly, Cellectis plans to start full clinical trials early in 2016.* Professor Waseem Qasim (who treated Layla at Great Ormond Street Hospital) says other patients in the UK are already being treated with these cells, although he would not reveal any details. (Read more here)

 

Researching further I note that in America that a Gene-therapy trial has already taken place and has published some very encouraging results in July this year. Please see the PDF document I’ve attached to this post.

 

If anyone has any information about the above mentioned clinical trials being conducted here in the UK (or new ones), please let me know?

 

This modern form of treatment is certainty a game-changer and one I’d like to be included in sooner rather than later.

 

Thanks again.

[Author]

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