Cure Alveolar Soft Part Sarcoma International (iCureASPS)

Deb, the errors in Potassium Measurement ruled out (reviewed).
Jussi - the hypercalemia is found in 5-10 % of the ICI trials, probably under reported. There are few typical reasons for elevated potassium and couple of ICI related (and I could not find and explanation as how do they cause it - some possible explanation was the excessive cells destruction - might be both malignant or own blood cells etc - then the intracellural content spills inside of the blood stream and the stored potassium inside of the cells released). Yes, the kidneys damage from the contrast might be the reason, creatinin is on an upper limit. Alternative reasons might be adrenals insufficiency after both sides previous cryoablations, autoimmune diabetes onset, some others too.
It is not easy to manage the elevated potassium in a long term. The exchange resins that are taken in a suspension are replacing the potassium and remove it from the body but can cause the lower than needed potassium very easily and it is the same danger as the high potassium for the heart, plus the resins are pretty dangerous as well. The potassium is very tightly regulated by the innate body system of checks and feedbacks in place, so for it to be high something basic has to not work properly. The diet lower in potassium is also only effective to a certain point as there is usually lots of it in the food anyways - it is very hard to eat the proper diet for the microbiome feeding and zink for the immune system and proteins for the sports and also have it low in potassium. So far we limited the high potassium foods.

I was hoping, that elevated potassium isnt permanent situation. In long term managing it is indeed very difficult. Body indeed regulates potassium very carefully, so most likely something basic is wrong if this is permanent situation. But let me be overly optimistic and hope, that high amount of potassium released from dying cells indeed finally was more, than kidneys could handle.

If you have type 1 diabetes weight loss and thirstiness would be severe.

Hi Olga and Ivan

We’re sorry to hear of the battle of balancing the
potassium .

We hope the following days will bring good news of returning to normal .

Love

Deb, Ivan only gets the blood work in 2-3 days before Keytruda dose. Before the last one it was at 5 - the upper normal. I have no idea what it is like now. We do not do anything to control it, just reduced the dietary intake with the realization that there might be a problem with some internal regulatory system although if it is, simply reducing the dietary intake would not fix the problem. All the basic measurements are normal. He feels pretty good. Looks more like an autoimmune reason although as I said before - there is no clear understanding what exactly is going on to get it up. It is still very little known as how ICI work and the side effects are often reported and recorded as a symptom (dry mouth, lymphocytepenia, neutropenia, hyperkalemia) instead of the associated underlying reason.

Dear Ivan and Olga, I'm so sorry about the elevated potassium concerns, but Hope that it is easily treated and resolved, and am very grateful that you are so well researched and knowledgeable about the situation. As with all of the new targeted systemic TKI and ICI treatments, there are still so many unknown longer term side effects because not enough anecdotal information has been able to be collected and documented yet. That is one of the reasons that this Forum is so critically important since invaluable otherwise unavailable anecdotal treatment information can be shared and read sometimes long before it even becomes available in formally published research articles. Thank you for your faithful posting and graciously shared information. With deepest gratitude for your sharing and with special caring thoughts, healing wishes, love, and continued Hope, Bonni

Hello Olga and Ivan

Once and if levels of potassium are managed , could Ivan be a candidate for surgery? In the near future?
Or has the other adrenal / pancreas reoccurance been deemed the case ? Of no reoccurrance ?

Ivan is doing pretty good on Keytruda, despite some side effects. His last taken potassium was not above the limits (at the upper norm). There is no recurrence in adrenals and as per previous abdominal mri the mets in pancreas - one is no longer visible, the other is hard to see as it is almost not taking any contrast anymore. We are not evaluating the cardiac surgery at the moment, why? he is continuing on Keytruda and is able to play all his sports, cycling, photography, work.
Next week he gets the Holter monitor 24 hours test, then at some point the cardiologist will be reviewing it. Plus the potassium levels will be taken again. We are working on it:)

I just want to provide an uneventful update. I feel well, and there's no changes.

There's been a bunch of scans. Brain and lungs are totally clear. Abdomen and heart - results in a couple of weeks.

Truly so,good to hear Ivan .
Looking forward to the report in a couple of weeks .

Love

I love to hear uneventful updates ivan, and am SO happy that you are feeling well with totally clear brain and lung scan results. It is perplexing and frustrating that you have to wait a couple of weeks to receive your abdominal and heart scan results, but I know that seems to be the usual situation with your regular Canadian medical care, as opposed to Brittany's pharmaceutical company sponsored Cinical Trial scans in Edmonton where we are thankfully able to receive her scan results the next day after her scans. Your thus far VERY successful response to your Keytruda treatmentI provides a source of great Hope and encouragement to everyone in our ASPS Community, and I am deeply grateful for your continued gracious shariing and thoughtful updates. I am holding VERY tight to Hope that your abdominal and heart scan results will show no new mets and shrinkage and disappearance of all of your previous mets. I will be anxiously awaiting your update when you receive the scan results. In the meantime, take care and stay warm and safe in the seemingly endless Pacific Northwest Winter weather. With happy hugs, healing wishes, and continued Hope, Bonni

Yeah they aren't fast by any stretch of imagination here. Either way, it doesn't make much of a difference. I am not too nervous about the results currently.

There is substantial evidence that lifestyle factors like sleep, stress, diet, and exercise can all play a very important and interconnected role in immunotherapy response. More generally, in the immune system. I am compiling a comprehensive review which I will be able to present to the community this quarter.

I will be anxious to read your comprehensive review Ivan, and am very appreciative of your efforts to compile your observations and evidence and to share them with our ASPS Community. I have personally observed and always felt that a positive attitude plays an extremely important role in strengthening the immune system by stimulating endorphins, and conversely a negative attitude can weaken the immune system. You and Brittany, for example, are both very good examples of the beneficial importance of trying to maintain a positive attitude in fighting this very challenging disease. I know and understand that having a positive attitude does not always win the battle, but it is very helpful in helping a patient to better fight the disease. With special appreciation for your thoughtful sharing and with caring thoughts, healing wishes, and continued Hope, Bonni

So glad to hear of the great responses to keytruda, Ivan, and that you are still exercising and going about your usual activities despite being on the drug. You are truly an inspiration with your positive attitude. I really do feel that stress plays a huge role in disease progression and we constantly have to remind ourselves to keep a positive attitude, to eat right, keep a healthy lifestyle and to remain noncomplacent.. something I haven’t been doing in the past year but will be back on it ASAP! Looking forward to seeing more results with your upcoming scan results.

The abdominal MRI is clear. One of the two cardiac metastasis were reported to have shrunk a few mm. The other one is stable. The tumors are not enhancing with contrast.

Nhi, the side effects of pd1 for me are nonexistent. A little bit of dry mouth and my tongue gets a bit irritated sometimes.

ALL GOOD NEWS Ivan!! Thank you for sharing and providing strengthened Hope to those of us in the ASPS Community.
CELEBRATING with you and your family, Hoping for continued good scan results with more met shrinkage/disappearance and stable disease. and reaching out to embrace you with happy hugs, special caring thoughts, and continued Hope, Bonni