Jussi from Finland - Dx 2008 - 30.3.1991 - 23.8.2019 R.I.P.

[D.ap]

Jussi
All excellent news!
Thanks for sharing .
Love

[Ivan]

That's definitely promising, considering the symptoms improvement especially.

What's the largest you have in your lungs? With ideas to radiate potentially. Was the heart measured by cardiac MRI?

I find it strange that some lung leisions have shrunk and some have grown. Have you looked at the scan yourself? What's the magnitude of the changes? .

[arojussi]

I had just thoracic and abdominal ct and brain mri. If we want to know exactly the size of heart tumor we indeed need cardiac mri, but considering that my heart`s pumping ability has definitely improved as heart rate is 76-96 during walking. So measuring heart tumor is relatively low priority for me at the moment. Lungs re unusual place for mixed response, but as mixed responses are very common I am not very worried.

[D.ap]

Jussi and Ivan
The mixed response maybe is from the Ipilimumab
( yervoy ) and or the cediranib added? Tki?
Jussi you are still on cediranib ?

[Ivan]

I think a cardiac MRI would be timely to do soon. Pseudo progression typically lasts for a limited time, so things should start moving in the shrinking direction shortly with a response.

How long have you been on the current protocol now, Jussi?

[arojussi]

Opdivo, cediranib and avastin little over a moth.

[Ivan]

6 weeks to 3 months mark is what some guidelines name as reasonable controls for pseudo progression if I'm not mistaken.

[arojussi]

Lets take this from the start first scan two moths after starting immunotherapy and radiation for subcutaneous met: growth in part of the heart met. I believed that, this was true progression and lost hope. 31 hours later my heart started beating normally 80 beats per minute. Few days kater 69 beats per minute. Radical improvement from over 110 beats per minute when immunotherapy was started. 2 moths later brains mixed response. 2 moths later all in brains shrunk. lungs mixed response. Heart stable. Now my heart rate just was 78 beats per minute and blood pressure 110/73. I dont believe, that it is physically possible for my heart to function this well if heart tumor has truly grown. So if cardiac mri shows heart met growth I simply believe it is still pseudoprogression. In this situation I wont allow radiating of the heart met as it will result in devastating mortality. Ablation of the lung met would be safe, but we need nonresponding lung met. As immunereaction is more visible in bigger mets. It is not weird for me to see mixed response as bigger lesions appear bigger while smaller lesions shrink. So I dont believe I can make decisions based on cardiac mri. Of course there is no radiation and contrast doesnt slowly build up to body, so there is no downside in cardiac mri, but as I dont see how cardiac mri affects my treatment at the moment I see no reason to hurry with it. As I dont believe cardiac met can grow without causing effusion to pericardium I believe lesion to be necrotic tissue and lymphocyte infiltration. If echo shows effusion returning heart met is most likely growing and we need a cardiac mri to confirm. But as long as there is no effusion I dont believe there is growing cancer.

[arojussi]

So interesting lab results crp 20. Normal would be less than 3. But I have been having little flu, but no systemic symptoms. Also rheumatic disorder caused by immunotherapy could explain elevated crp. I have been having severe muscle tension fitting with polymyalcia rheumatica. Interestingly leucokytes were normal. Total leucokytes 4.35. Neutrophils 2.22. So basically crp is elevated but I cant find a reason for it. Even rheumatic disorder would most likely affect in white blood cell count. Heart ultrasound hasnt changed. Most obvious explanation would be new tumor growing somewhere, but as I had scan like a week ago is doesnt seem likely. Thyroid is starting to detoriate. Tsh 13. But as hypothyroid is more pleasant than hyper, we dont react to it yet.

[Olga]

Is the albumin level measured as well?
You might be having a case of the cytokine release syndrome - IL-6 should be measured to rule it out. It is an adverse effect caused by the ICI drugs. It was recently found that there is correlation of IL-6 and CRP with the development of an irAE in after PD-L1 blockade.
There is a case of ASPS patient having that, I corresponded to the author before, they treated it with the interleukin-6 inhibitor tocilizumab and corticosteroids, but she really felt sick and was admitted to a ER, may be you are having a mild case.
Severe cytokine release syndrome in a patient receiving PD-1-directed therapy.
ttps://www.ncbi.nlm.nih.gov/pubmed/28544595
other causes are cardiac related or other inflammatory processes in the body, there should be other blood work abnormalities to rule out other possible causes

[arojussi]

Thanks. Mild cytokine release syndrome actually makes most sense.
I forgot to mention pro-bnp has gone way down. From 1200 to under 700.

[D.ap]

Jussi
Hope you are feeling better as time goes on.
When will your next infusion be sched ?
Are you on a 3 week sched ?
Are you still on thyroid Med?

[arojussi]

So crp has increased to over 80. Pro-bnp 1900, of course week break from cediranib will increase heart rate as blood pressure goes down. This will elevate pro-bnp and tnt. Si there is definitely heart muscle damage, but in theory it can be caused by cancer growth or immunological reaction in the heart. Tomorrow avastin and nivolumab. I started cediranib again today as I couldnt take week break as planned. Crp can be from heart damage or immunesystem attacking my shoulder muscles. Yes I know my changes are not good. Two weeks ago pro-bnp was below 700 and tnt was 5. Asps growing this fast doesnt seem likely, but it is possible.

[arojussi]

As TnT is very spesific for heart muscle damage I didnt believe there vould be any other explanation. Now I found one finish case study, where elevated TnT was caused by myosiitti, muscle inflammation. Possible side-effect of immunotherapy. So it is possible, but common diseases in rare forms are more common, than rare diseases in usual form, so I cant be certain. But as my shoulders are hurting badly symptoms fit better to some kind of muscle inflammation. As heart rate has mostly stayed between 80-90.

[D.ap]

Hi Jussi

What’s your oncs spin with your bloodwork reports ?
How are you feeling overall wise ? Less flu like ?