Cure Alveolar Soft Part Sarcoma International (iCureASPS)

If you get any obvious response in any met, the chances are there is going to be the abscopal effect as the time goes when the tumor specific recognition killer cells are circulated elsewhere so you just wait and keep with the same. If there is a clear progression in one of the lung mets, the cryo to that met would be a good option to attract the immune system there tough. Some lung cryo cases are not complicated, besides being treated by Dr.Littrup for complex lung locations, Ivan had few mets cryoablated locally by Dr.Liu with full success - located further away from the airways/heart/major blood vessels - just in a middle.

Thanks. If I need ablation and it is possible to have Littrup I would feel most comfortable with that. As there initially was growth in brain tumors and instead of treating them right away I decided to wait and see if they would start to shrink. They did. So my first instinct is to continue same way. Question mark is the heart tumor as cediranib run out my rest heart rate rose to 80-90, so it could be either tumor progression or just a symptom pf blood pressure dropping after stopping cediranib. As hypotension need to be treated immediately we try pasopanib and see if it fixes the proplem, before I get more cediranib.

Jussi
You are trying to bring up your BP ? By substituting pazopanib to help with hypotension ?

Or trying to make sure delivery of the Opdivo is being delivered to the heart tumor ? By treating low BP?
How long after the monthly dose of cediranib do you revert to hypotension ?
You’ve mentioned you are normally low blood pressured?
What did your bp run normally ?

As tki commonly increase blood pressure and massive heart tumor causes blood pressure to drop I use pazopanib to help with heart tumor symptoms. As blood pressure drops adrenaline tells heart to beat more. Resulting in rest heart rate of 80-90. When on cediranib my heart rate is under 70. Getting my heart rate lower would allow me to get some exercise again. As it is not safe to let my heart rate to rise above 110. After I start cediranib break heart rate usually rises in day or two. Low blood pressure is difficult term. Basically it is not dangerous unless organs cant get enough blood. As tki can solve elevated heart rate I really want to treat it immediately for quality of life before hypotension starts causing real problems. This is little unusual use of pazopanib, but it makes perfect sense, so I havent looked into other ways to elevate blood pressure. I am pretty sure there would be other ways. Six moths ago rest heart rate was over 110. So heart rates still better, than when immunotherapy was started. I am fine with systolic blood pressure of 100. But as it drops to below 90 my heart rate rises.

As there is undeniable response in brain metastases and effusion caused by heart met has disappeared after starting immunotherapy and my shoulder tension and pain are almost certainly rheumatic side effect of immunotherapy I am carefully optimistic, that If I survive long enough I will see response to immunotherapy.

Jussi
Thank you so much for your explanation !
Interesting chain of events which you have so graciously shared.

If you don’t mind me asking , do you have a family history of hypotension ? And can your ced dosage and or avanstin dose be adjusted to help your Bp when you finish your 20 or 30? days of ced?
I’ve read on some clinical trials using TKIs for hypotension and the pathways that are seen to be involved to cause hypotension . Interesting
Really hoping you receive great reports with the scans !
Love

I havent been coughing lately, so heart tumor progression is very unlikely as for heart tumor to grow it must almost certainly cause some effusion. Effusion would definitely cause cough. Of course pseudoprogression can make tumor look bigger. As last scan was just 6 weeks ago and moth ago total leucokyte count was 4.35 and neutrophil count 2.22. And last week leucokyte count was 6.82 and neutrophil count 4.18 I find it unlikely that there was enough neutrophils for cancer to grow during this time. High neutrophil count is associated with poor prognosis in many cancers. There is almost certainly progression in lung mets like before, but as this is exacly how response happened in the brains it is most likely pseudoprogression.

I was thinking about the neutrophils rising. Do you take Zinc supplements? I am not sure if there is a link, but initially when Ivan started to take zinc, it was a very low dose and his lymphocytes were rising but neutrophils were not. But after couple of months I noticed that his neutrophils started to rise as well. I think all the white blood cells rely on zinc for maturation so probably zinc does not have to be taken continuously - but accurately, low dose and just when the lymphocytes are below norm, and stopped when the blood result gets better. we stoped zinc supplements and now his neutrophils went a bit lower, lymphocytes stayed the same - better NLR this time. May be this is just a coincidence.

Disease progression. Immunotherapy is over.

Hello Jussi
Where is the progression being seen ? How much of an increase ?

I don’t know much about TKIs but I suspect to this day when Josh was on sutent for 2 months ( as well as propranol ) that his radiological progression was because of a toxicity not his tumors progressing ? If that makes since .

Here’s a write up on radiological management of the egfr tki


“Continuing EGFR-TKI beyond radiological progression in patients with advanced or recurrent, EGFR mutation-positive non-small-cell lung cancer: an observational study”

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5604715/

Everywhere. Little growth in brain mets, heart met and met in mandibula again. As it is little growth it fits to asps progression better, than pseudoprogression. If there would have been aggressive growth it would fit better to pseudoprogression.

In summer effusion from my pericardium disappeared, when I was using just opdivo and radiation, so maybe I had some response to immunotherapy, but response was very weak. Later my subcutaneous lesion started shrinking before avastin was added to my treatment. So there are tiny holes in theory, that I didnt respond to immunotherapy at all. But unfortunately most likely explanation still is, that immunotherapy isnt working after 6 moths and all I can do is buy time with differnt tki.

Obviously I havent yet accepted my unavoidable death, but it is very difficult to avoid at this point.

Jussi
I’m so sorry for your news however sleep on it as tomorrow will bring a clearer picture , I’m sure of it.
When was your last infusion ?

Last infusion was on friday a week ago. Scan next thuesday, so if immunotherapy caused swelling it hasnt settled before scan. I have been on immunotherapy little over 6 moths. As there has been similar case where after 6 moths it wasnt clear if there was treatment response, so they re-scanned again after six weeks of drug holiday and saw response. So I would like to keep taking avastin and cediranib for symptoms and re-scan and have cardiac mri to confirm disease progression in like 6 - 8 weeks. And then discuss about continuing immunotherapy based on scan results.

Does it mean they will not give you Opdivo anymore? But you have not tried to SBRT or cryo to other mets to start the recognition, it can be done locally easily or the cryo to jaw bone met with Dr.Littup.
Another idea is to go to Dr. Lugnani in Spain to cryoablate the jaw bone met with the injection of the small dose ICI into that met or the lung met.

Initially oncologist seemed to think, that immunotherapy wont help and tkis are the only way to gain more lifetime. Well at first he didnt have much fate about gamma knife either, so if we gain response and have reason to believe it is from immunotherapy he might reconsider.

Subcutaneous met, that was radiated, when immunotherapy was started is almost certainly dead.

Easiest way to achieve abscopal effect would be to have stereotactic radiation in private hospital here in Finland to mandibular met if it is a met. I still believe it might be just wound and swelling of the gums. Well there are other mets if needed.