George From China - Dx 2007

[Jorge]

Great news!

George had a lung CT in the weekend and the scan shows his lung is much relieved--the report says the lung mets are significantly decreased in number and size, the biggest met is now 0.6x0.6cm!

Back to Dec 2015, George had progess to have more mets in his heart even he had been using TKI since Aug 2015. So we decided to use Keytruda.
To trigger the effect of Keytruda, he had a cryoablation to the kidney and adrenal gland mets first and had the first injection about 4 days later.
Before the first injection, his lund has innumberable mets due to the rebound after stopping TKI in 2014. After 5 injection, there are only a few mets now!

[D.ap]

Hi Lynette and George
What great news to hear of!!
Hugs to you both .

Are the side effects ok for George ? He's always been so brave And you as well !
I sure hope so
What was your thought (s) on taking care of the kidney tumor prior to taking keytruda ?
To boast the immune response by using cyroblation ??

http://www.scirp.org/journal/PaperDownl ... perID=5473

It's really wonderful to hear from you !
As Bonni would say. Sharing in the HAPPY DANCE with yourself and George.
Love
Debbie

[Bonni Hess]

Dear Lynette,
Thank you for sharing this wonderful and VERY encouraging news which I am SO VERY grateful and happy to hear, and yes, I am doing the happy dance for George and you!! You have both fought George's relentless disease together with immense undeterred courage and determination, and you are SO deserving of good news!! I am holding VERY tight to Hope that the Keytruda will be VERY successful in shrinking and destroying all of George's numerous and widely disseminated mets in addition to his lung mets, and that it will provide sustained and long term stabilization of his disease. Is George also receiving other monitoring scans for other areas of his body in addition to the lung CT? To my knowledge, George is the only patient on this Board currently being treated with Keytruda, and the success that George has experienced with this promising new immunotherapy drug thus far is certainly a source of great Hope and encouragement for all of us in this ASPS Community. It will be very interesting if it can be determined/proven that George's pre-Keytruda kidney and adrenal mets Cryoablation helped to trigger the effect of the Keytruda since this is a theory that has been discussed regarding the positive effect of Cryoablation on creating a more successful systemic treatment response. I Hope that George is tolerating the Keytruda well and having minimal negative side effects. I will be anxiously awaiting your next update as I continue to closely follow George's Keytruda experience and results with greatest Hope that Keytruda will provide a desperately needed new treatment option for all ASPS patients. In the meantime, please give dear George and yourself celebratory hugs from me and know how VERY happy I am for both of you .
Sharing your wonderful and encouraging news with great joy, healing wishes, much love, and continued Hope,
Bonni

[Olga]

Lynette, this is great. What about heart mets, they have to be seen on that scan too? This subject was discussed by us before, about increasing of the immune response by previous cryo. It can be measured somehow, the response with and without cryo.

[Jorge]

Thanks so much Debbie!
He had been using Axitinib since maybe Nov 2015 and he didn't stop it when he started Keytruda. The side effect of Keytruda + Axitinib is much more severe than using either one only. The side effect is serious fatigue, loss of appetite, nausea and vomiting etc. But tolerable. However, George felt he could have deep breath after the first injection. Before this, he couldn't hold the breath after the second thoracotomy.
George stopped Axitinib right before CNY to have a good holiday. Since he is feeling better, he didn't continue Axitinib. The previous CT was done about 10 days before he stopped Axitinib, so we think the effect is from Keytruda not the tki.

People using Keytruda are trying to boast the immune response in all kind of ways, and as Olga said we also have discussion on this forum about the increasing of the immune response by previous cryo. So...

Hi Lynette and George
What great news to hear of!!
Hugs to you both .

Are the side effects ok for George ? He's always been so brave And you as well !
I sure hope so
What was your thought (s) on taking care of the kidney tumor prior to taking keytruda ?
To boast the immune response by using cyroblation ??

http://www.scirp.org/journal/PaperDownl ... perID=5473

It's really wonderful to hear from you !
As Bonni would say. Sharing in the HAPPY DANCE with yourself and George.
Love
Debbie

[Jorge]

Thanks for your encourage, Bonnie!
George had lung CT and brain MRI in the weekend. There is some different change on the MRI, but not sure about it yet so I didn't say about it. Will have an MRI in one month to confirm the change.
And yes, you're right about have the heart inspection. We will see a doc tormorrow and will request it.

George is not the first Chinese patient using Keytruda. Meng used it first and the effect is very impressived. With her good news, we decided to use it.
I've read an article before, but I can't find it now--Sarcomar patient has very high expression in PDL-1 in the tumors, if I remember correctly, the expression ratio is over 60%. This article is wirtten on the summary of over 10 kinds of Sarcoma, but ASPS is not included. Now from our cases, I guess the PDL-1 expression of ASPS may be very high too.
I hope our case can be used for NA patients to appeal for the use of Keytruda.

Dear Lynette,
Thank you for sharing this wonderful and VERY encouraging news which I am SO VERY grateful and happy to hear, and yes, I am doing the happy dance for George and you!! You have both fought George's relentless disease together with immense undeterred courage and determination, and you are SO deserving of good news!! I am holding VERY tight to Hope that the Keytruda will be VERY successful in shrinking and destroying all of George's numerous and widely disseminated mets in addition to his lung mets, and that it will provide sustained and long term stabilization of his disease. Is George also receiving other monitoring scans for other areas of his body in addition to the lung CT? To my knowledge, George is the only patient on this Board currently being treated with Keytruda, and the success that George has experienced with this promising new immunotherapy drug thus far is certainly a source of great Hope and encouragement for all of us in this ASPS Community. It will be very interesting if it can be determined/proven that George's pre-Keytruda kidney and adrenal mets Cryoablation helped to trigger the effect of the Keytruda since this is a theory that has been discussed regarding the positive effect of Cryoablation on creating a more successful systemic treatment response. I Hope that George is tolerating the Keytruda well and having minimal negative side effects. I will be anxiously awaiting your next update as I continue to closely follow George's Keytruda experience and results with greatest Hope that Keytruda will provide a desperately needed new treatment option for all ASPS patients. In the meantime, please give dear George and yourself celebratory hugs from me and know how VERY happy I am for both of you .
Sharing your wonderful and encouraging news with great joy, healing wishes, much love, and continued Hope,
Bonni

[Jorge]

Yes, the heart mets can be seen on the lung CT but not very clear. George needs to have a heart CT with contrast later.

we're also thinking of using some interleukin to boast the immune response. Do you have any suggestion on this?

Lynette, this is great. What about heart mets, they have to be seen on that scan too? This subject was discussed by us before, about increasing of the immune response by previous cryo. It can be measured somehow, the response with and without cryo.

[JolieS]

So happy to read about your positive news. I wish you continued success with this combo of drugs! I believe this is the same drug combo the new ASPS clinical trial at the university of Miami is testing. Very promising

[Olga]

Lynette, I have a question re. Keytruda (pembrolizumab). Is George getting it by the prescription (not in the clinical trial setting) from his oncologist off label? As I understand it is a second case of the dramatic response in Chinese ASPS patient that we are having to a single drug Keytruda (PDL1 targeting drug, immunotherapy). It is approved for few different diseases now, so it is on the market. Do you have to co-pay, is it expensive?
Is he getting it by the injection or intravenous, what are the side effects? Do you know if any of the patients on it had their bone or soft tissue mets responding? We have a member seeking this info urgently (Tom).

[sharmeebles]

Lynette! It is so nice to read George is doing well! George's strength is to be admired. Happy hugs to you!!

[Jorge]

Hi Olga,

It's prescribed off-label by the oncologist in a Hongkong clinic. It did cause us much trouble to persuade the doctor to prescribe it for George. The price is HK$ 35000/100mg. It's not covered by any insurance. The drug should be used in intravenous, sorry I misguided in the earlier post.

As you know, George has the disease metastasized to heart and humerus. Although he didn't have any scans to the 2 part yet, but he feels the symptom from these 2 parts is much relieved. He used to feel pain in the heart and the arm, but the pain is gone now and his heart rate slow down to normal of about 70--it was over 90 before using Keytruda.
We consulted a immunology specialist who is developing some immunotherapy. He told us the PD-1 anti body works through the lymphatic system; once it work, it works for the whole body.

The side effects are asthenia, diarrhea, loss of appetite, and later hypothyroidism. If it's used with some TKI, the side effects are much more serious. The side effets also depends on the condition of the patient, if the patient is in good condition, the side effects seems very slight. If the patient is not in a good condition, especially poor hemogram, it may be dangerous.
However, it's still worthy to try Keytruda if you can get the chance. I personally think the key is how to boast it to get the best response.

[Olga]

Lynette,
thank you so much for answering.
It is very important for other patient's to know that Keytruda can be prescribed off label. Is the MRI for George's humerus in the plans at any date? Would have been interesting to know if it really works in bones and I hope it is working to destry this met right now!
I will link this post to a topic I opened for Keytruda in the Systemic treatment - as when it is used off label it means people can get it besides clinical trials. It is good to participate in the trial when possible - and there is more supervision over its use also - but there are also many limitations such as weight, mets locations and overall acceptance/location issues. Also it is a very good note that cryoablation of some mets might increase the systemic response.
The new topic is here:
http://www.cureasps.org/forum/viewtopic.php?f=76&t=1241
can I post the scans there? I do not have them. If you have any problems in unloading them, just send me in the e-mail to my home e-mail as an attachment.
What is the daily dose?
Expanded Access Program http://www.merck.com/about/eap_faq.html

[all]

Lynette，
How about George now? I am chinese too.

[Ivan]

George is good. Are you a member of the asps group on Wechat? If not, I can invite you.

[D.ap]

All
If you go to a post of Jorge and Lynette’s and touch their login in upper left hand side of post , you can view all what they’ve posted on the forum to date .
Lynnette has been very active posting on other people’s personals .
Ivan is right that Jorge is doing well . : )