Cure Alveolar Soft Part Sarcoma International (iCureASPS)

I do not see this from this statement. Hard to say.

Sam
Yes the immunotherapy is showing a better targeted response . Anti Pd1 and or ant Pdl1 .

I’m sure sorry for the brain tumor discovery .
Please don’t let it derail and keep you from moving into immunotherapy treatment as well as treating the brain tumor , sooner than later .

Our son was dx’d at 32 and had brain tumors by age 34.

Love,

Hi, Olga:

I'm meeting my immunotherapy doctor in 2 days.

I'd like to let him know that immunotherapy shall come right after brain met radiotherapy for my immune system to better recognize ASPS tumor in my body.

Could you please share any paper of this?

Thank you very much!


Best,
Sam

https://www.ncbi.nlm.nih.gov/pubmed/30392086
https://www.ncbi.nlm.nih.gov/pubmed/29485071
https://www.ncbi.nlm.nih.gov/pubmed/30241791
there are only some of the relevant articles, and I hope that you will not need the steroids after the radiosurgery - the size is small so you might not need them, as they reduce the effectiveness of the ICI treatment

Hi, Olga:

Bad news that the doctor found 0.7cm met*1 + 0.2cm met*7 in my brain MRI.

I need to take Gamma Knife and Keytruda soon.

Does Keytruda work on brain mets as well?


Best,
Sam

I am so sorry to hear that. If Keytruda works, it work on all mets. The problem is that if you get all of them treated at once, you will most probably need to have steroids for the treatment caused brain swelling, and steroids reduce the immune response greatly so it can cancel the effect of Keytruda. I would start keytruda first, right away, to give your immune system chance to recognize the tumors. Then have one brain met treated with the second dose, radiosurgery done after Keytruda in 1-2 days so Keytruda works unaffected. Discuss with the doctor what does he think about the location of the biggest brain met and if the steroids are going to be needed after the treatment.
The other thing is how well you are recovered after the heart surgery? How is your weight, strength? All of this affect how Keytruda works as it needs the good functioning immune system and gut health to form a tumor specific immune response.
Is the 0.7 mm brain met the new one or it is the same previously mentioned first found 0.5 mm met?

Hi, Olga:

It has been three weeks since my heart surgery.

Since my heart wasn’t damaged too much by the tumor, I am recovering pretty ok.

I can walk almost like before although I lost 5% weight after the heart surgery.

Yes, the 0.7cm met is the same as the 0.5cm met found earlier without contrast agent MRI.

Is there anything I can do to enhance the immunotherapy response rate?

Best,
Sam

Hi, Olga:

If I have to take some steroids for a couple of days for the brain swelling caused by radiation therapy, does it mean Keytruda won't work forever?

Or just doesn't work for a couple of days?


Best,
Sam

I am not sure how soon lymphocytes recover after steroids (besides steroids usually are not taken for couple of days but weaned off gradually). I have reviewed the clinical trial that I posted earlier limitations and they do not allow on trial people within >= 2 weeks from discontinuation of corticosteroids - this is expected to reduce the efficacy so they do not want to negatively affect the results of the trial. If you can consult with the immunologist, it might be better to ask re. recovery time. But since the combined regiment concurrent SPRT+immunotherapy is used in the trials with the good result, and in many cases the patients need the steroids after SBRT treatments, it means that the benefits outweigh the negative effects of steroids. So if you start the K first and have the SBRT 3 weeks+1 day later after you had the second dose of K, you will be fully recovered before the 3rd dose.
Also talk to the oncologist re. K dosing - it is not necessary to have 200 mg all the time, some people do very well with the half dose especially if their height/weight is not that big.

Hi Sam and Olga,
Steroids may not be needed if the brain swelling is not fierce and have the side effects like headache, dizzy or sick. And as to my experience and the experience of other Chinese patients, mets small like this wouldn't cause much side effects after Gama Knife.

Lynette

Lynette, the question is how to plan it better. Sam has got 8 brain mets now - one is 0.7 mm and the rest are tiny 2 mm mets. If he gets them all treated by the GammaKnife at once, the chances he might need steroids are higher, correct? but if only 7 mm one is treated, he has more chances to go without steroids. But it is better to ask the radiologist. Sometimes they give steroids as a rule, just in case, so he needs to discuss the treatments interaction in any case.

Hi, Olga:

I am 74kg in weight.

I plan to take full dose at the first three months, if Keytruda works, then I will take half dose in order to save money.


Best,
Sam

Very meticulous thoughts, Olga!

Sam,

Hello . I too am sorry to hear of the additional brain tumors found . The downfall to surgeries are sometimes metastatic growth, however removing the heart met was truly beneficial I feel .

When you say full dose , will that be 200mg every 3 weeks?
I’d be interested too , to know where the 7mm tumor is located as we had a 1cm left occipital tumor treated back in 2015, treated successfully by SRS and LITT.

Love

Hi, Olga:

Today is the first day of my first full dose (200mg) Keytruda (8/30).

I now have two option dates for the Gamma knife for the biggest two brain tumors：
(1) 9/4
(2) 9/17
(My 2nd dose of Keytruda will be on 9/20)

Which date do you recommend me to do the Gamma knife to better help enhance Keytruda response to my tumors?

As for the remaining tiny brain tumors, would you recommend me to do a whole-brain radiation surgery?

Best,
Sam