Cure Alveolar Soft Part Sarcoma International (iCureASPS)

There will be good news!!

I am happy to report that the cardiac MRI I had last week shows a further interval decrease in tumor size. I will have the report with exact dimensions on hand in 2 days.

The only side effects I continue to experience are dry mouth and my tongue occasionally flaring up both of which are presumably autoimmune. Overall these are of medium severity and do not have a strong impact on my quality of life.

Oh Ivan that is awesome news!!
My heart is so happy for you and your family.:)
You all must be over the moon with joy.
Thanks for the great joyious news..
Love
The Pearson’s

Happy to hear.

This is truly wonderful news ivan!! :) Thank you for sharing the great joy and strengthened Hope that your Keytruda treatment success provides for everyone fighting this very challenging disease. I will look forward to your next update and continued good news. With celebratory High 5's, happy hugs, healing wishes, and continued Hope, Bonni

So we just have received another amazing report - abdominal MRI to watch two pancreas metastases - one in the uncinate process close to the pancreatic head and one in the middle - they both are hard to visualize - almost not visible and not measurable anymore. We are very happy to hear that - after almost a year ago one that is close to the pancreatic head was considered as borderline unresectable unless most of the pancreas is taken out during the huge abdominal surgery. There are no full written reports for both - heart and abdominal MRI - it really takes a long time here to get the reports finalized - more than 2 weeks passed.

Wow so amazing Olga.
So incrediably happy for you all.

Love

That’s very good news.

Dear Olga, I am sharing and celebrating the great relief and joy of this additional and continuing good news with special happiness and continued Hope, Bonni :)♡

Wow, that is such great news! Glad to hear you're doing well on the medication with minimal side effects as well.

The cardiac and abdominal MRI I just had done were reported as stable. However, the report was lacking any objective measurements and I'm quite suspicious. I have been feeling some elevated heart rate at times, and just overall have not been feeling that great, although this one month long cold could certainly have something to do with it.

I am going to try to have someone else look at the cardiac MRI and hopefully measure the tumors in quantifiable terms. Meanwhile, it's not bad news.

Asps becoming resistant to immunotherapy in theory it can happen, but I have never seen a case were patient is confirmed to strongly respond to immunotherapy in asps and response wouldnt be durable. Flu and remaining scar tissue and/or inflammation irritating the heart would seem more likely. As immunesystem is able to attack asps, that is located deeped in the heart immunereaction can start causing symptoms again. Or maybe I just have missed all cases were asps-patients become resistant to immunotherapy. Definitely have second opinion as you plan.

Ivan wrote:The cardiac and abdominal MRI I just had done were reported as stable. However, the report was lacking any objective measurements and I'm quite suspicious. I have been feeling some elevated heart rate at times, and just overall have not been feeling that great, although this one month long cold could certainly have something to do with it.

I am going to try to have someone else look at the cardiac MRI and hopefully measure the tumors in quantifiable terms. Meanwhile, it's not bad news.

Ivan I’m curious to if you are able to perform bloodwork as needed ?Heart enzymes checked ? EKG ran .
Especially when you aren’t feeling like yourself.

You’ve had a flu test , as Jussi pointed out ? Some kind of virus is going around as our family about a week and half ago had 24 plus overall body aches low fever.

The consultation with the cardiologist is scheduled soon, she runs ECG herself during the visit. Ivan's potassium level was abnormally high couple of last months, unfortunately we missed its significance - when it was 5.5 it was flagged in the blood work couple of months ago, but since the oncologist wasn't that worried I did not read on it then. But the next blood work done before the Keytruda 3 weeks ago it rose to 6 and the oncologist was alarmed and took action - gave him a prescription for the drug that replaces potassium so it gets excreted via the stomach (Sodium polystyrene sulfonate belongs to the class of medications called cation-exchange resin). It came down in couple of days, then it came back up a bit after he stopped this drug. Last time it was tested at the level 5 (with the optimal being 4.5-4.7). If it is to low, the heart can not function. If it is to high, the heart can not function. There are few reasons why it can be to high, one of them is a Keytruda side effect - if the immune system eats some cells to actively - benign cells as an autoimmune disorder or cancerous cells as it it intended to - the intracellural content spills into the blood stream and the potassium rises. There is like 5-10% of hyperkalemia reported in Keytruda trials, as guess it might be the same with others ICI. Other causes are adrenal insufficiency, diabetes onset, some other autoimmune conditions, renal insufficiency (as the potassium exchange and signaling supposed to mostly happen in kidneys). There are markers to clarify but we are not there yet.
So in general, heart rate and palpitations might be caused by the elevated potassium months after the spikes.
Also we might have caused some spikes by the diet modification - in attempt to increase zinc to improve lymphocytes maturation/quantity Ivan ate lots of zinc containing food recently - dried apricots and pumpkin seeds and potatoes and bananas and tomatoes happened to be extremely high sources of the potassium as well. And the dark 85% chocolate that he eats a lot could be considered as a potassium supplement as it is extremely high in it. If the body works properly, it regulates potassium very tightly and is able to get rid of an excess very easily, but looks like something does not work well in Ivan. May be kidneys are failing after all the scans with the contrast. His creatinine level is at the upper limit.

Sorry kidney failure is common with ipilumab and nivolumab compination. But elevated potassium is common with just nivolumab. Elevated potassium is relatively easy to reconise from ekg. And if problem is just elevated potassium it is lot easier to treat than kidney failure. Also rapid heart rate is common with compination treatment, but relatively rare with just nivolumab. Sorry my mistake. Ideally elevated potassium explains everything and solving that is relatively easy.