Ivan rocking it since 2003

[Disco76lover]

Ivan / Olga I am so sorry to read this. I will hope and pray that you get the response you want from Toronto and the PD medication is available to start soon and works! Your anxiety must be awful but the knowledge you have will hopefully stand you in good stead for getting the treatment you will need to overcome this. It sounds like you are under a great team and know that we are thinking of you.

[jenhy168]

Hi Ivan,
I am so so sorry to hear this bad news...it breaks my heart.

So were your 2 pancreatic lesions already been treated? (I wasn't very clear on this when I read your 1st point.) If you haven't had the surgery yet, I hope you can get the surgery soon.

PD1 - would you need to wait to start the treatment until after any surgeries you may need?

Soft tissue glute met - Are you planning to have surgery to resect? What kind of scan would have detected a met in this area? A full body PET scan? I haven't had one of those in years too....

Echo & 2 cardiac tumors - I haven't even heard people with ASPS getting cardiac tumors....I'm so sorry this happened. Good advice that people should get a yearly echo to monitor the heart. I personally had to get a couple Echos this year because it was required for the clinical trial I was on.

It's good to hear that you at least can still exercise...I am unable to do any kind of physical activity without having a coughing fit.

Hope you hear back from the Toronto team soon...keep us updated when you can~

jen

[D.ap]

Hi Ivan

Wow. I sure am sorry to hear of all that is apparent to be going on with tumors .

I really feel the gut microbes are a very important focus to consider for sure.

Have you been able to connect with Karen who had heart tumors?
http://www.cureasps.org/forum/viewtopic ... aren#p6018

It’s sure not the time to understand why they happened but how to address them , huh.
I , like Jen, and all hope you get answers soon to move forward .
The tumors appear to be in heart tissue ?

It sure is important to have a systemic Med on board to help reduce the heart mets, so there can be a removal and also something for the fight of possible further micromets.

Again I’m so sorry you are going thru this quandary , but I know you have the best team behind you !

Much love and prayers
The Pearson’s

[arojussi]

Sorry to hear these news. If surgery or other local treatment isnt possible, you are most likely perfect candidate for immunotherapy, because your asps most likely has lots of mutations at this point, so immunesystem can regocnize cancer. Of course there is no quarantee, but there is still hope. I most likely cant say anything you havent thought already, but I want to say something anyway. In theory you could consider adding stereotactic radiation to one or two mets before or during Keytruda treatment to achieve abscobal effect. Combining keytruda and radiation is relatively safe based on my limited knowledge. Only limitatation that I know of is that you shouldnt have radiation and keytruda at the same day. In genral Sutent had more side-effects than combined pazopanib and Keytruda for me, at least that was a case before I developed mild colitis that was most likely caused by keytruda. so if you choose to ad Sutent be aware of possible toxitisies especially blood vessel related problems. My heart always beats very rapidly when Doctor listents to it, but this is more likely caused by my nerves rather than Sutent.

[Bonni Hess]

Dear Ivan, I am sorry to be slow in responding to your heartbreaking update but our 3 very active little grandchildren were here for the Thanksgiving holiday and I wanted my response to have the time and attention it deserves. My heart is broken and I am stunned by the seemimgly sudden aggressive progression of your disease with the diagnosis of pancreatic, gluteal, and heart mets, especially since you are always so vigilant in proactively monitoring your disease wirh regular scans. After our 16+ years of this difficult battle I didn't think that there was anything more that could surprise me about this insidious disease , but we now know through your thoughtful and gracious sharing that the chest CT is not adequate to detect heart mets. and that an echocardiogram is required. Based on the relatively large size of your two heart mets, is there any way to determine how long they have been present so that you can try to determine the rate of growth and the urgency in trying to resect or shrink them? I am very grateful that the heart mets thus far don't seem to be symptomatic or causing any coronary issues, and that you have been able to maintain your admirably active Lifestyle and physical exercise regimen. I know that you and your dear mom must be devastated and emotionally overwhelmed right now, but I know too that you have great strength, courage, resiliency, and the ability to overcome difficult challenges as you have done SO very well and successfully throughout your determined battle during the past 14 years. Your incredible resourcefulness and knowledge will serve you well and help to provide good direction for this new challenge on your courageous journey. Given the aggressive disease progression with development of several new mets along with the possible unresectability of the two relatively large heart mets, I agree that pursuing a systemic treatment is the best treatment option. I agree too that one of the promising new PD-1/ PD-L1 treatments like Keytruda is a good choice, if not Cediranib, which as you know has thankfully been very successful thus far for Brittany. The main message that I want to convey to you is one of Hope dear Ivan. Before Brittany began her Cediranib Trial eight and a half years ago, she had aggressively progressing disease with innumerous widely disseminated mets including a Life threatenimg unresectable/untreatable met in the head of her pancreas which created a dismal prognosis. VERY thankfully she has now had eight and a half years of sustained disease stability with no remaining scan visible mets. There IS great reason for Hope that you too will overcome your new challenges dear Ivan. Hold VERY tight to that Hope, let it lead you through each day, and know that Brittany, Jim, and I are all rooting for you and we are here to try to help in any way that we can. Reaching out to embrace you with special hugs, most caring thougjts, healing wishes, much love, and continued Hope, Bonni

[D.ap]

Hello again Ivan and Olga and family

My question is what did the pathology report say about the pancreas mets ?
Was it shown to be of a high mitotic rate ?
Any help on content ie mutations ?

Maybe it’s not been recieved yet ?
Sure thinking of you all tonight
Love
Debbie

[Olga]

Bonni - it is not the sudden aggressive progression.
The cardiac mets were missed (not seen on a chest CT scan - only now in retrospect they can see a mild septum thickening) - they can only be seen on a specific cardiac MRI or at least echo and Ivan did not have that. It is a big oversight on our part but on the other hand - if it could be resected then, it could be resected now - it did not invade anything, just grew locally. We are working on it - the location is rare and we need a very specific type of surgeon, I found out that the only surgery that is frequently done in this location is a septum reduction surgery for a disease called hypertrophic obstructive cardiomyopathy, it is done in US in 3 surgical centers - Mayo clinic in Rochester, Cleveland and Boston. I contacted all of them, plus our center in Toronto is going to review Ivan scans next week. It is a very damaging surgery by any experienced surgeon and the question is what to do first.
The pancreatic mets just appeared as the abdominal mets do in the last few years - 1 or 2 per a year. They grow slowly, then they get toa szie they can be seen. In a pancreas it is hard to see the met even on a dedicated MRI.
The soft tissue met has probably been there for awhile, this area is not usually included in the CT with the contrast and this time the radiologist just took a picture lower than usually. Ivan had a whole body bone scan and it was not found by it.
Thanks to our Canadian members of this board who's ASPS patients are responding to PD drugs - Elisa's Johannes and Auz from Toronto father - they gave me tons of info re. positive responses, their treating oncologists and Merck position re. approval plus the positive result from the CTOS 2017 Ketruda+axitinib trial so it was enough to persuade the oncologist to prescribe Keytruda. The ply thing is that the provincial insurance is not paying but she applied to Merck Canada to cover and waiting for their answer (this is not what is holding us from the start but rather we need to finalize with the surgical opinions). We wrote a sample application for Keytruda or any other PD-1 or PD-l1 drugs and I will post it later for other people to use.

[Bonni Hess]

Dearest Olga, Thank you for the additional information and insights into the development and diagnosis of Ivan's new mets and the treatment options which you are so promptly and proactively exploring. I am so grateful for your ability to be so resourceful in seeking and finding the best available treatments, and for the important PD-1/PD-L1 treatment information shared by Johannes and Andrew Ward which will help expedite your application process for the very promising Keytruda drug for dear Ivan. I Hope that you will receive the surgical opinions from Toronto and the three USA surgical centers as well as the Keytruda coverage response from Merck soon so that you can determine which treatment to move forward with first. In the meantime, I know how very difficult and stressful the waiting is for you and Ivan, but how important it is to have all of the necessary information before making this very important treatment decision. I will be anxiously awaiting your next update when your time and the situation allow. Take care dear Olga and know that dear Ivan, you, and your family are being held very close in my, Brittany's, and Jim's hearts and most caring thoughts, and that we are sending our most positive thoughts, healing wishes, warm friendship, love, and continued Hope across the miles, Bonni

[MartinBube]

Hi Ivan and Olga,

I'm really speechless.

You guys are much more familiar with this asps than me and I do not have doubt that you will choose the right path to move forward.

I just want to support you to keep on searching and get the right treatment no matter what.

Ivan you are a role model for us all fighting this damn asps and I know this might be a cliche sentence but please try even harder to be mentally as much as possible OK.

you will be in my prayers.

[jenhy168]

Hi Olga, thank you for the update.

Were the pancreatic mets first detected on abdominal / pelvic CT? Or was it only detectable via abdominal / pelvic MRI?

Hoping you get responses soon from the 3 surgical centers for the septum reduction surgery...
Also, I'm glad you were able to have your onco prescribe Keytruda.

Thinking of you both,
Jen~

[Olga]

Nothing to report so far. Most of the surgeons refuse to attempt the cardiac tumors resection based on a location/multiple (2)/availability of Keytruda and responses detected in ASPS patients.
We are still waiting to hear from a few places re. surgery incl. Toronto.
We met with the radiologist to discuss adding a radiation to one metastasis to a Keytruda (if we to start it) in order to try to create an abscopal effect - an immune system potentiated attack in other non-irradiated places that could be made possible by Keytruda blocking distant tumors immune resistance mechanism based on PD-1 expression. The radiology department is supporting us and agreed to experiment. It is hard to determine the irradiation regiment properly that would stimulate versus suppress the immune system tumor specific response, and the best timing although it appears to be within 72 hours in between the Keytruda administration and the radiation therapy treatment. Since we do not have much safer tumor location selection - heart, pancreas and a soft tissue met in a buttock, so obviously the last one will be targeted first.
The Keytruda is approved by the sarcoma team but both, provincial health system and Merck Canada are refusing to pay for it. Merck said if there is a response, we can reapply. We will pay for it initially ourselves, who knows for how long which I am ok with. The very availability of it now is a good opportunity,and it can be administered at the local infusion clinics at no charge for the patient with all the scanning and adverse effects surveillance and management provided by the skilled in Keytruda administration team. It worth a lot.

[D.ap]

Olga and family

The move forward with the Team,sounds good
I’m sure they will have good suggestions along side the infusion treatment .ie Cautions etc

My love to you all
Debbie and family

[Bonni Hess]

Thank you for your very thoughtful update dear Olga. It sounds like good progress is being made moving forward as quickly as possible towards a promising treatment combination that will Hopefully be able to provide tumor shrinkage for all of the mets and to make the two heart mets more resectable while stabilizing progression of the disease. I am so grateful that the Keytruda has been approved for Ivan, that it is available, and that he will be able to receive the infusions locally by an experienced Keytruda infusion team so that he won't have to travel out of area/country for his treatments which is very important in terms of expense and dear Ivan's physical and emotional comfort. It is very frustrating that neither the provincial health system nor Merck Canada will pay for the drug, but it is fortunate that you are in a position to be able to pay for it for now, and there is great Hope that the treatment WILL be successful and Merck will then be willing to pay for it and Hopefully reimburse you. I Hope that you will very soon receive responses from Toronto and the other places that you are seeking surgical opinions from regarding resectability of the 2 heart mets so that you can then more confidently move forward with a treatment plan knowing that you have explored all of the options and made the best decision. Our hearts, continued most positive thoughts, and very best wishes are with dear Ivan, you, and your family dear Olga as we anxiously await your next update and news of your treatment decision. With warm hugs, deepest caring, healing wishes, much love, and continued Hope, Bonni

[Ivan]

All the top cardiac surgery teams in the US/CA/Europe think that systemic therapy is better than surgery.

Next week, I will start Pembrolizumab. It's injected once every three weeks. With the second dose in early Jan, I'll have radiation to my glute metastasis for adjuvant potentiating effect done on the same day. It will be a hypofractioned dose - something like 4x8 Gy.

Pembrolizumab will be paid for out of pocket. It's all off-label, and even though the provincial sarcoma panel approved it, there's no funding available for it. The state of the health care system here is such that to even have infusion at the hospital, you need to wait 1 month. Fortunately, there are private clinics available where you can pay to have it infused in a reasonable time frame.

[D.ap]

Ivan and family

The consensus sure seem to be in agreement with the treatment protocol.

My love and prayers for success, as well as local management team to be vigilant with Ivan's care today and always .

Gods speed to you all.

Love
The Pearson's