Ivan rocking it since 2003

[Olga]

Ivan had his second Keytruda treatment a week ago plus had 4 SBRT treatment in the same week. More detailed report is here:
http://www.cureasps.org/forum/viewtopic.php?f=76&t=1506
He feels pretty good recently. His scans are in Feb.
The other good news is that our BC Cancer Agency reviewed the appeal we wrote and agreed to pay starting the next dose! (they previously refused to pay for Keytruda and we had to pay $8000 twice as a self paying patient plus have it administered at the private clinics, with the minimal supervision over the side effects. I was OK with paying/Ivan was not, but the point of appeal was that the evidence is strong enough for them to admit it is a right treatment in this situation. Everyone says it is a very rare case when they reverse the decision, but ASPS is so rare too...).

[D.ap]

Hi Olga

That’s excellent news!
February will be here before you know it!
Thanks for sharing with us all.

[Olga]

Some excellent news to report! After 3 Keytruda dose Ivan had two MRI scans - a cardiac MRI and an abdominal MRI. We just had a meeting with the oncologist to review the results before of his next 4th Keytruda dose tomorrow, Fe.22. We only have the preliminary reports, but in general there is a shrinkage in all the main metastases - two pancreas metastases are smaller by about 4 mm each and both heart metastases are smaller too - one is by 4 mm, the other is by few mm - the report is kind of non-comparable as it listed S*S dimensions instead of the previously used volumetric S*S*S dimensions. I will post a very detailed side by side compare in Ivan's Keytruda topic when we get the final reports. It is a very promising response so far in less than 2 months from the treatment start to the scans dates, especially considering that we did not have the base line scans and they were earlier by 2 months before the treatment started on Dec.22. His ASPS mets the usual speed of growth is at least 1 mm a month, so by conservative estimate they were bigger by 2 mm and it makes the response (probably) like 6 mm in some metastases/dimensions! The cardiogram looks better too. The next treatment is tomorrow. No side effects to speak of.

[D.ap]

Holly Molly Olga and Ivan and family ,

This is awesome news!!

How’s Ivan feeling ? Have you all been performing fractional radiation as well?
Much love and joy coming your way
Love
The Pearson’s

[arojussi]

Very happy to hear these news.

[Olga]

Deb, the radiation treatment (SBRT) was done with the second Keytruda dose in 4 hypo-fraction treatments 4*8 during the week every other day starting on day 1 Keytruda. I posted about it when it was done in Ivan's experience with Keytruda topic http://www.cureasps.org/forum/viewtopic.php?f=76&t=1506

[jenhy168]

Great news Olga. Hope for continued success of the keytruda treatment!

[Ivan]

I had a lung CT a couple of weeks ago. To be honest, wasn't that curious about the results of this scan since I really only care about the heart at this point. Major ~60% shrinkage reported compared to pre-treatment. Most drastic note was 8 and 9mm tumors which became "no longer visible".

Cardiac MRI is May 14 - that's the one I'm curious about. Starting around 1-2 weeks ago I feel no more cardiac symptoms of any kind. I feel very well.

[arojussi]

That is very good news. With these resuls I would be suprised if heart mets havent shrunk.

[D.ap]

Excellent news Ivan!!

Josh while on opdivo has had resolved lung tumors as well not to mention brain mets resolved .
I’m with you and Jussi on the possibilty of the heart mets having the same results.

Debbie

[Bonni Hess]

Thank you for sharing this wonderful and VERY encouraging news dear Ivan!! Pembrolizumab and a couple of the other promising new systemic treatments certainly seem to be having incredibly successful results for several of our ASPS Community patients which is VERY exciting!! I Hope that you are continuing to tolerate the Pembro well with none of the gastrointestinal issues that some Pembrolizumab patients are experiencing and reporting. My most positive thoughts and very best wishes will be with you on May 14th for VERY good scan results from your cardiac MRI, and I will be anxiously awaiting your update. In the meantime, take care and stay warm, dry, and safe in this seemingly endless Winter Pacific Northwest cold, rainy, and snowy weather. Sending happy hugs and sharing your good scan results with great joy, caring thoughts, much love, and continued Hope, Bonni

[Disco76lover]

That’s fantastic news!! X

[ntran727]

That is such great news Ivan. Great to hear that you are doing well and tolerating the treatment without significant side effects. I hope the cardiac MRI shows shrinkage as well!

[jenhy168]

Wonderful news Ivan. Let us know how the cardiac mri results are when you can.

[Ivan]

Cardiac MRI results will be available towards the last week of May.

We wrote an appeal letter to the BC Cancer agency, and they agreed to reimburse the cost of the first two pembrolizumab infusions that we paid for out-of-pocket.