Dr Øystein Fluge to Give Public Talk in Norwich, UK, 26th Jan 2017

[BurnA]

but I am wondering how patients are coping with cyclophosphamide side effects. I guess we will find out later this year. Apparently the side effects are much worse than with cancer patients.

The video discusses this.
Nausea is more or else in all patients.
Some patients have a worsening of symptoms so much that it lasted from one infusion to the next. Makes you wonder how they benefitted, but the overall impression i got is that patients did benefit, despite the side effects.

 

[Riley]

The video discusses this.
Nausea is more or else in all patients.
Some patients have a worsening of symptoms so much that it lasted from one infusion to the next. Makes you wonder how they benefitted, but the overall impression i got is that patients did benefit, despite the side effects.

They also said that the treatment period is only six weeks. It sounded like the side effects were worst during the treatment period.

I'd go through anything for six weeks if it meant I improved afterwards.

Cyclo scares me though because of potential long term side effects on the body.

They talked about it causing premature menopause as well . That's some powerful stuff.

They did present the one case study of the lady who was bedridden for 3 years and was able to take 10,000 steps a day after cyclo treatment. They rated her at 40% functioning though which seems odd to me because 10,000 steps is several miles. I wonder in what ways she was still limited.

 

[alex3619]

I'd go through anything for six weeks if it meant I improved afterwards.

I have a suspicion most patients will think like that. Indeed, what I am expecting, and I could be wrong, is that the severe effects will be claimed to be worth it by patients because of the long term benefits.

 

[Murph]

I have a suspicion most patients will think like that. Indeed, what I am expecting, and I could be wrong, is that the severe effects will be claimed to be worth it by patients because of the long term benefits.

They also said that the treatment period is only six weeks

My reading was that the treatment period was more like six months. Six treatments of cyclo, each four weeks apart. So 24 weeks.



The doctor says in the video that during this period, ME symptoms get worse. At first, it's intermittent. You get a bad week or two after the infusion. But by the end of the six month period the transient worsening is no longer transient - it lasts up until the next infusion. She says the patients describe this period as "very hard". Two women in their early 40s went into premature menopause too. (They are looking into fertility preservation ahead of the next trial.)

The fact they are still extending the trial despite the severity of side effects is a definite reason to hope. You don't add another six months to a trial if you have nobody in remission that you want to follow! Also, it may well be the case that cyclo is helping some of the rituximab non-responders (who were included in this trial)

The other reason that I suspected cyclo is going well is she posts a slide with a map of cause and effect that shows an arrow going from T-Cells to the unknown signalling factor that leads to metabolic dysregulation. While rituximab affects b cells, cyclo affects b cells and t-cells.



It's not 100% clear that they are sure that t-cells are involved, but the schematic doesn't rule it out either.

 

[Riley]

My reading was that the treatment period was more like six months. Six treatments of cyclo, each four weeks apart. So 24 weeks.

I just re-watched some of the video. You are correct she said six months not six weeks. My mistake.

She also said that "a lot" of patients out of 40 have responded. I wonder if we can speculate more than half? Her tone of voice sounded very positive.