Cure Alveolar Soft Part Sarcoma International (iCureASPS)

Dear Jussi,
Thank you for your thoughtful update. I am sorry to be so slow in responding but we were traveling back and forth to Edmonton, Alberta for Brittany's Clinical Trial scans which, as I updated in the Cediranib topic, were thankfully very good. It sounds like you are still on Pazopanib as well as Keytruda which will Hopefully be a very effective and successful combination of drugs to stabilize your disease and shrink and destroy your mets. We and Brittany's oncologist continue to wonder if Brittany's previous GVAX Immunotherapy Vaccine treatment and/or her ARQ-197 C-met treatment may have contributed to her thankfully thus far very successful, sustained, long term Cediranib response which to our knowledge seems to be unprecedented in terms of the usual patient response to this drug. It seems that drug combination therapy is the current trend in systemic cancer treatment and Hopefully it will prove to be extremely successful. I am grateful that your headaches seem to be resolving and Hope that they will eventually completely disappear along with your vision and balance problems as your brain swelling and the brain mets dissipate. My very best wishes and greatest Hope are with you for very good and encouraging results on your upcoming brain MRI which will Hopefully show that you are having a very successful response to the Keytruda. In the meantime, take care dear Jussi and know that you are held very close in my heart and my most caring thoughts.
With special caring thoughts, healing wishes, and continued Hope,
Bonni

Tumors have shrunk. No new ones. Will ubdate more after I rest.

Jussi
Great news !!
We are truly sharing in your happiness today
These were 2 month scans ?

Love
Debbie

Great. Few questions:
1. Where they all treated by the radiosurgery or there were some that were not treated and they shrunk as well? I am trying to figure out what has worked (radiosurgery, Keytruda or pazopanib).
2. Are you still on Keytruda and pazopanib? How are the side effects.

Great news Jussi!!Hope you are in good spirits.

Very happy to read this

Dear Jessi, I am sharing your wonderful news with greatest joy , and am holding very tight to Hope for continued very good scan results. Celebrate, take care, and keep the Board updated as you are able. With happy hugs, healing wishes, and continued Hope, Bonni

Dear Jussi, I just wanted to say that I was happy to read you had shrinkage and no new mets. my son just had a met removed from his cerebellum and his balance is improving too. Get some rest and update as you can. Sending hugs to you and your family

There is no new mets and the old ones are stable or little smaller. The biggest one is now 2.0 cm. Before it was 2.5 cm. Other tumors shrank less. There is veil around some tumors. The radiologist thinks it is necrosis caused by radiation, but it doesn't look quite right to be necrosis also it has appeared sooner than radiation necrosis usually. Little mets are stable or maybe some are little smaller, because of their size it is hard to say. Radiologist doesn't say if smaller tumors that shrank were radiated or not. It is very difficult to say what worked and what didn't. I hope keytruda works, because it is the only medicine that can achieve long response.

Yes this was 2 moth scan.

I continue with keytruda, but I try to take a break from pazopanib, because there is one painful wound that hasn't healed.

Interestingly the biggest mets shrank the most.

Was it treated by the radiosurgery?

Good morning Jussi

I some how missed your post on Thursday
The additional news on shrinkage is wonderful !
You are at your 3 month keytruba dose , correct?
We have had a shrinkeage in Joshua's liver where he had been treated a year ago for a 3cm tumor treated with cooled microwave tipped ablation in Michigan .

We have been on Opdivo for a little over 3 months now.
I will be posting later today on the forum with great results on our CT And MRI

Keep the faith Jussi!

Thanks for the update
Love
Debbie

I had my fifth dose after mri. I have been on keytruda 3 moths now.

To Olga

Yes the biggest mets had radiosurgery.

Hi again Jussi
Since you are a medical professional I was wondering if you have any insight on radiation and immune therapy
I've found a website that has a spectrum of discussions on tumors and adjunctive treatments, such as surgery and radiation being discussed.
The 2 largest tumors can be surgically removed right ?


http://www.onclive.com/peer-exchange-ar ... -treatment

Also have you found a good definition of the terms cold and hot tumors that you can share
I first heard this term being used by Breelyn Wilky who is over seeing the clinical trials in Miami

https://www.google.com/amp/s/breelynwil ... ent=safari

My thought is using all your resources maybe you have a case to bring before your doctor to remove the 2 largest brain tumors ?
Olgas right when she mentioned surgery is a lot easier on the brain than additional necrotic tumor disapating and causing pressure inner cranial wise ? I.e. Radiation
Just a thought

2 biggest tumors can most likely be operated. Problem is that because there are other 18 small tumors no one want to operate. Especially now that the biggest tumors are shirnking. After 2 biggest ones start growing again I really think surgery or LITT is the best course of action, but like I said no one wants to operate. Universal hospital that I have studied last 6 years and completed 78 percent of medical school wants to participate my threatment as little as possible, so they most likely dont do surgery unless it is acute emergency. I know emergency surgeries are way riskier than carefully planned ones so we still try to find surgeon who would operate. Smallest tumors can most likely be killed by radiation and in 4 moths I had no new tumor, so if I have surgery for the biggest ones I might stay alive for years.

Hot tumors are already surrounded by with cells, so they just need a little stimulation to kill the tumor cells. Cold tumors dont have white cells around them. At least that what I think it means I am not 100 percent certain.

I get my next keytruda in public hospital, so at least My dad doesnt have to pay several thousend euros for that anymore. This hospital is smaller than universal hospital where I study, so they most likely cant do the brain surgery. I must say that I am really disappointed to finish heathcare.