[bobjankersParticipant]

Hi,
I’m new to this forum but I’ve had multiple myeloma for over 9 years.  In the last 2 months since my bone strengthening drugs ceased I’ve unfortunately relapsed again and am about to embark on a second course of chemotherapy.

I would like to know if anyone has been offered a new pioneering cancer treatment involving gene-therapy similar to the treatment received by baby Layla in London recently?
The one year old was dying from an aggressive form of leukemia and when all conventional treatments failed she was treated with genetically engineered immune cells.  Within a month those cells had killed off the cancerous cells in her bone marrow and her body is now free of the cancer! (‘Designer cells’ reverse one-year-old’s cancer)

This is very promising news, and for a 65-year-old that is fretting over going down the chemotherapy route once again with all its worrying side-effects, it could be a miracle cure.

Hope someone can provide any further information.

Many Thanks

 

 

[finnParticipant]

Hi Bob

Your myeloma journey sounds very encouraging, only second course of chemo in 9 years, well done. About the novel genetically engineered immune cell treatment, it is not available for general public yet. It has been used in few cases whrere there are no alternative treatments available. However, this novel thereapy, which sounds perfect, is not without its risks. Although they are using the patiens own cells, the cells still need to be genetically altered and this is not a foolproof process. When genetic material in cells is changed/added, there are no guarantees that only the correct modifications will happen. We will see in the future if in each individual case the genetic manipulation has been faultless and will cause no harm to the patient. Of course when there is no hope for any other cure, this method can be at least tried, as it has been done with these few young patiens. I am sure your doctors will find something less risky treatment options suitable for you. Best wishes

[mhnevillParticipant]

Hi Bob

I was interested in your post. Welcome to the Forum.

Sorry, I have nothing to offer on the question you ask, but wonder if you think coin God zometa and relapsing are linked?

I had my final zometa in May after well over three years of four weekly infusions. This was because my kidney function was deteriorating. Glad to say, in November my pp still showed as undetectable.

I am five year post diagnosis and had cdt over three and a half years ago.

Of course, remission is always the elephant in the room. I have thought, if/when I relapse I might have a conversation about trying CDT again, perhaps ar lower doses.

These decisions are so difficult aren’t they, but isn’t it encouraging there are so many more choices even from when I was diagnosed.

I have lost so many friends on this Site that it is good to hear from someone who is a survivor.

All best wishes.

Mavis

[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.

[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.

[finnParticipant]

Hi Bob

Interesting article about gene therapy in multiple myeloma. It looks like it has not been very effective treating myeloma so far, as in the American study published in Nature Medicine the progression free survival, PFS, was only 19 months, and it was estimated that all patients in the study would relapse in about 30 months (graph shown in supplementary figure in the paper). So definitely not a cure yet. However, I am sure they will develop better markers/cells for this therapy and we will see these being tried soon. Best

 

 

[bernardParticipant]

Some interesting results today from the US on ‘killer T-cells. Sounds similar to the treatment described above. All part of the immunotherapy treatment. 90% of those treated in the study (who were all at last base for treatments) went into remission so that’s encouraging. Very early days yet and no data published but good news at least. There was a panorama programme on immunotherapy last year. I watched it whilst having my stem cells harvested. It was all very encouraging until towards the end when some of the patients they were following relapsed. It seems that the cancerous cells mutate over time to fight against the new treatments. However still 2 steps forward in my mind….even if it comes with 1 step back.

Stay healthy everyone.

bernard

 

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