Cure Alveolar Soft Part Sarcoma International (iCureASPS)

Hello, everyone

I am happy to report that my heart tumor is now 19x13 mm, down from an initial 37x34 mm which corresponds to a ~90% reduction in volume.

The abdominal report is preliminary, and the only remaining visible lesion is reported as being "subcentimetre" and showing a decrease from the previous scan 3 months ago. Whatever the MRI's caught in the lungs are also noted as having shrunk further.

I have developed a dry mouth, which is likely keytruda-related and my tongue is painful but overall these are minor side effects.

I’m speachless my friend!!!
Its beyond good news . Its ??

Love to you and family.

Yes, Debbie - we are so happy tonight. The sacns were done two weeks ago and it was pretty scary to wait for the result...
I will add the detailed report at Keytruda treatment Ivan's topic here:
the http://www.cureasps.org/forum/viewtopic.php?f=76&t=1506

Such wonderful news Ivan! So happy for you responding so well to the medication. It is good to know how well Keytruda works in case sutent ever stops working for me. Aside from the sore and dry mouth, do you have any other side effects? Are you still able to work out and function like you used to?

Really happy to hear these news.

Awesome news Ivan!
I've been reading up on your journey!
We use to talk here and there years ago!

Glad to see good news with what you've been through in the last while!

Such a great news! We're so happy for you!

Dear Ivan,
Our Team Hess is sharing your VERY GOOD and encouraging scan results with greatest joy, happy celebration, high fives, and strengthened Hope. We are SO deeply grateful that the promising new Pembrolizumab Immunotherapy treatment is proving to be SO successful for you and several other ASPS patients. How often are your monitoring scans being done, and when are the next scans scheduled? In addition to your cardiac and abdominal scans, are you being followed with scans for your gluteal and chest mets, as well as having an annual brain MRI and full body bone scan? Is there a specific amount of time that you will continue to take the drug, or will you continue to take it on an ongoing basis as long as it is providing tumor shrinkage and disease stability and you are able to tolerate the side effects? Brittany's excellent primary oncologist, Dr. Elizabeth Loggers, at Seattle Cancer Care Alliance just recently returned from attending the ASCO Conference and said that there was tremendous excitement about the success of the new PD-1 Checkpoint Inhibitor drugs such as Pembrolizumab. I Hope that you are feeling well enough to continue your very active and admirable physical exercise regimen, and to enjoy all of the special Pacific Northwest summer activities. I will be anxiously awaiting your next update which will Hopefully bring more good news of continued tumor shrinkage/disappearance and sustained disease stability. Take care and have a wonderful summer.
With happy hugs, special caring thoughts, and continued Hope,
Bonni

Thanks, everyone :)

ntran727 wrote:Such wonderful news Ivan! So happy for you responding so well to the medication. It is good to know how well Keytruda works in case sutent ever stops working for me. Aside from the sore and dry mouth, do you have any other side effects? Are you still able to work out and function like you used to?

Yes - my athletic, and job performance is at healthy levels. I have no other side effects. Still working on getting that 185 kg squat..

Bonni Hess wrote:Dear Ivan,
Our Team Hess is sharing your VERY GOOD and encouraging scan results with greatest joy, happy celebration, high fives, and strengthened Hope. We are SO deeply grateful that the promising new Pembrolizumab Immunotherapy treatment is proving to be SO successful for you and several other ASPS patients. How often are your monitoring scans being done, and when are the next scans scheduled? In addition to your cardiac and abdominal scans, are you being followed with scans for your gluteal and chest mets, as well as having an annual brain MRI and full body bone scan? Is there a specific amount of time that you will continue to take the drug, or will you continue to take it on an ongoing basis as long as it is providing tumor shrinkage and disease stability and you are able to tolerate the side effects? Brittany's excellent primary oncologist, Dr. Elizabeth Loggers, at Seattle Cancer Care Alliance just recently returned from attending the ASCO Conference and said that there was tremendous excitement about the success of the new PD-1 Checkpoint Inhibitor drugs such as Pembrolizumab. I Hope that you are feeling well enough to continue your very active and admirable physical exercise regimen, and to enjoy all of the special Pacific Northwest summer activities. I will be anxiously awaiting your next update which will Hopefully bring more good news of continued tumor shrinkage/disappearance and sustained disease stability. Take care and have a wonderful summer.
With happy hugs, special caring thoughts, and continued Hope,
Bonni

Every 3 months. The glute met hasn't been checked, but perhaps one day we'll check up on it. I would expect it to be completely gone since the radiation treatment alone should have been enough to take it out. I'm due for chest CT soon enough, and brain MRI also (every 6 months).

I will continue for as long as the side effects remain minimal, and the shrinking continues. I feel very well, healthy, and physically strong. Dry mouth issue has been a bit better and far from serious. I drink a lot anyway.

Great news,

I'm really happy for you guys.

I'm glad I didn't see the imaging before, to be honest.

Ivan
I sure agree.
I would of been quite startled by that first image .
:/
Those scan comparisons are amazing!
That’s the
interventricular septum tumor huh .
Truly glad you have Keytruda on board.

So happy for you!

Here's the second heart tumor which was much smaller to begin with, but currently is difficult to measure

Just an update on my condition. I'm feeling well, no issues. I did the CT scan but haven't seen the report yet. Cardiac and abdominal MRI are coming, those are the important ones.

Thinking of you and looking forward to news , Ivan .