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

[D.ap]

Jussi
Dr. Breelyn Wilky , who is one of the clinical oncologist running the pembro / axitinib Asps trial in Miami Florida here the the USA , wrote this a year ago on twitter

http://www.cureasps.org/forum/viewtopic ... lol#p10408

[D.ap]

Jussi
I think it important to talk of you taking ibuprofen , as propranol interacts with COX 2 inhibitors ?
According to the above medical write up.
Possibly along with and not against ?
I tend to agree with Olga. Take it a litte easier wit your exercise regiments ? Maybe lower impact exercise . : )

It’s because we are moms and care about you . : )

[arojussi]

Propranolol b-blocker most likely interact with ibuprofen. Based on quick look ibuprofen can inhibit b-blockers effect to reduce blood pressure. As my blood pressure is already low. This is positive interaction. As I use b-blockers mainly to prevent arrytmias using low dose ibuprofen when needed feels relatively safe.

Of couse I need to start exercise again very carefully. Because I use exercise as painkiller stopping it would be extremely stressfull. Something I dont have enough willpower to do, so I might start slowly doing crosstrainer exercises tonight.

[D.ap]

How is your chest pain these days Jussi ?
Is it constant even with ibuprofen ?

[arojussi]

So as usual I am using google trying to convince myself that ventricular tachycardia didnt cause any permanent heart damage. One electrical shock brought sinus rytm back. Next day ekg showed around half of a mm st depression. Very unspesific finding. It is barely visible change at all and less than half mm ekg depressions are nothing. So I most likely didnt had full infarct. And ischemia is usually transient. Definitely need another ekg to make sure, but it is hard to believe that this st-depression would kill me. With propranolol my heart rate first increases, but soon drops. Now as long as I keep my heart rate below 115 I have no problems. So for exercise I can only walk keeping my heart rate the same it is during rest.

[arojussi]

I I have always been a very old soul, so I want to tell that my heart rate is at the moment great. 84. Also till no sign of heart failure. No tiredness, no angina or any swelling in limbs or anywhere. So my heart is definitely still able to keep sufficient blood volume circulating. Only scary thing is that during exercise my heart rate drops quickly if my heart rate goes above 110. As beta blockers eliminate adrenaline`s effect naturally beta blockers will cause dramatic effect in my heart rate. Initially my dad believed that beta blockers would just prevent my heart rate from going up in the first place. and that might be the case. lets be optimistic and hope that knocking out adrenaline isnt exact science and reactions to beta blockers can vary greatly between individuals. Electrical system in my heart is definitely messed up after tachycardia, but that should settle over time.

[D.ap]

Good news Jussi with heart rate :)

What dose( extended , oral and /or liquid) and what day are you on in taking the propranol ?

[arojussi]

Propranolol:10 mg twice daily. Very small dose.

it took a lot of internet search, but it looks like ventricular tachycardia itself doesn't cause damage. But that is a risk. Ventricular tachycardia is naturally very dangerous situation, but looks like I survived mine without permanent damage.

[D.ap]

You are doing a great job .
It’s a process of introducing the new Med .

[arojussi]

New and growing tumors in brain and lungs. Also I have pancreatic tumor. Hear has 2 tumors slight growth radiologist considered heart stable. This doesnt make any sense to me.

[arojussi]

Pericardial effusion is still gone.

[D.ap]

Hi Jussi

ICI related growth as well as abscopal effect?
They were discovered thru MRIs of the head and pelvic areas?

It took 4 months on Opdivo for our already detected pancreas/kidney tumors to show an effect from the ici.
We chose to wait till the next 3 month scans to make a decision to which way to go. Treatment of tumors and or discontinuing Opdivo .
That was over 2 years ago.

Our scans were scheduled out at about the 4 month mark to hopefully allow opdivo to go through its course of attacking, inflammation, then having the scan show reduction of Joshua's brain, lung, adrenal, pancreas, kidney and liver tumors.

http://www.cureasps.org/forum/viewtopic ... 1297#p9919

Lots of data points to pseudo issues being part of the process at the beginning of taking ICIs.

How big is the brain inflammation ? Possible tumor .



I’m sure sorry you are having to discover and having to deal with , these added image looking growths.

[Bonni Hess]

Dear Jussi, I have been closely following your many posts and the responses, but have not written because I must admit to unfortunately lacking any helpful knowledge to contribute about the subjects which have been discussed regarding ICI combination treatments, the abscopal effect, etc. I am so deeply sorry to hear that your most recent scans show new and growing tumors in your brain and lungs as well as a pancreatic tumor, but am holding VERY tight to Hope that these are the result of ICI pseudo progression which will Hopefully ultimately resolve as has happened with a couple of ASPS ICI patients who I follow including Mario. As always, I am very grateful that you are so knowledgeable, well informed, and proactive and that you have the ongoing faithful and dedicated support of dear Mikko and your father. You are a very strong courageous young man and I Hope that you will continue to fight this insidious disease with your usual inspirational determination and perseverance. Holding you especially close in my heart and most caring thoughts and sending healing wishes, love, and continued Hope across the miles, Bonni

[Olga]

It might be a pseudoprogression as Deb said, they had it with Josh at 4 months scans, other patients had it at 2-3 month scans.
Here is the basic articles for the scanning problems:
Immune Checkpoint Inhibitor Cancer Therapy: Spectrum of Imaging Findings.
https://www.ncbi.nlm.nih.gov/pubmed/29131763

This is the newer artcile with the free full text:
Pitfalls in the radiological response assessment of immunotherapy.
https://www.ncbi.nlm.nih.gov/pubmed/29983829


also read some article to see if any clue:

Serial pseudoprogression of metastatic malignant melanoma in a patient treated with nivolumab: a case report
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5696908/
The liver metastases showed an initial transient increase in size (+119%) in the CT obtained at the 3-month assessment (Fig. 2b), whereas at the 5-month assessment, CT showed shrinkage of the liver metastases with a change of their density (Fig. 2c), fulfilling the definition of early pseudoprogression.

[arojussi]

It was nice when both me and my oncologist were both prepared to win the same fight about pseudoprogression. At the moment I cant think any other medicine,that could achieve long lasting response and that is the only thing I am willing to fight for. So hopefully I can continue immunotherapy until Idie. It can be very soon as I didn't react to keytruda last time it is hard to believe that it would work this time.

My dad has been certain that I permanently damaged my heart during tachycardia. It was nice that cardiologist considered my heart to be the same as last time.

So apparently I didn't get miracle fast response to immunotherapy, but there is not yet guarantee that I wouldn't react at all. And at the best case I still must survive pseudoprogression alive.