chloroquine?

[NikosF]

I am 8 1/2 years since diagnosis with a GBM - following a recurrence my doctor wants me to get a course of re-irradiation (rhis time with protons). During my upfront treatment I managed to get him to prescribe chloroquine for use during radiation (from Ben Williams paper) - what's the current thinking? and what is the right form? - phosphate or HCl?

Thanks,
Nick

[musella]

Nobody really knows - there are no good trials of it and we do not have enough people in our virtual trial project to tell. I feel it is worth a shot. Might also be worth trying Optune at the same time as radiation. There is a trial that will be testing that combination starting soon but you can do it off label. I always though Chloraquine plus Optune would be a good combination.. maybe try all 3?

[NikosF]

Thanks Al,

My NO thought it was worth a try - so I started with 500mg chloroquin phosphate from today.

I'll probably also go back on nivolumab once my radiation is over.

[musella]

Are you using Optune?

[NikosF]

Are you using Optune?

No - I'm not sure I'm ready for the lifestyle change. I don't like people to know I've got a brain tumor.

[Harvey]

Why would you use Nivolumab?
Checkmate trials weren’t a significant success-statistically.

[NikosF]

Why would you use Nivolumab?
Checkmate trials weren’t a significant success-statistically.

Harvey,

It kept my tumor at bay for 3 years between my 1st and 2nd recurrence, so it might have a beneficial effect on me. Also my NO thinks it's worth a try.

[Harvey]

You had a pathology that suggested potential nivolumab efficacy (mutational load/microsatelite instability, etc.)?

What were the side effects/how long did you use it?

[musella]

Re optune. That is a personal decision. I have gone through this with a lot of people and that is probably the number 1 reason people don’t use it. I see it all of the time. The problem is almost everyone gets to a point where they change their mind and says they are now ready. But it is too late and not even worth trying at that point. At that point it is obvious something is wrong neurologicaly so you can’t hide it anyway. These things such as not able to walk or talk are much more embarrassing than wearing the device. It might happen anyway with optune but usually much later. Optune is the only large phase 3 trial that was a success in 15 years.

[Harvey]

I would say the comment about changing your lifestyle is nonsense. The ONLY thing you cannot do with Optune turned on is swimming. I’m using Optune for 20 months now with a compliance from 94-98%.

I rode horses with it, I ski with it, I shower with it, etc.

[NikosF]

Wow - this thread took an unexpected turn. I think Novocure TTF is a really cool technology, and I'm glad so many people are happy with it.

I also think different people have different thoughts on what constitutes a lifestyle change.

Peace out.

[Harvey]

I think that lifestyle and worrying what other people think are two separate things.

The latter shouldn’t have such a significance-in my opinion.

[NikosF]

I think that lifestyle and worrying what other people think are two separate things.

When those people are potential clients, it makes a difference.

I didn't intend to come here to talk about Optune, so if I get further info/experience with chloroquine, I'll update.

[musella]

I understand - won't mention it again in this thread..

I like Chloroquine. See https://acsjournals.onlinelibrary.wi...002/cncr.24288 I think it is worth trying although we do not have enough proof yet to say it definately helps. The risk is pretty low - it is not that bad to take and the early data shows it helps fight the tumor (there is always a chance that something that sounds good in theory can do the opposite and make the tumor worse - such as antioxidents) - so we have at least some evidence it is worth trying.

[Harvey]

Hello Al, can you please explain your comment regarding antioxidants?

Reservatol, quercentine and other flavonoids are regularly suggested as potentially beneficial.

As I understood, the (only suspected problem?) could occur when antioxidants are used parallel with radio- and chemotherapy.

[Harvey]

Hello Al, can you please explain your comment regarding antioxidants?
Reservatol, quercentine and other flavonoids are regularly suggested as potentially beneficial.

As I understood, the (only suspected problem?) could occur when antioxidants are used parallel with radio- and chemotherapy.

[musella]

It is controversial (using antioxidents during radiation or chemo) - some studies show adding antioxidents do not decrease the effectiveness of radiation and chemo but there are enough that show it does that I would be wary. For example https://academic.oup.com/jnci/article/100/11/773/895704 my point is that you can't just say something makes sense so it has to work. It has to be tested.