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

[arojussi]

So I messed things up really bad. I was supposed to have opdivo and first avastin infusions last seek. But out of the blue my dad mentions my 1.5 cm subcutaneous lesion. I believe it is just a big pimple as they are both vascular lesions. However I was unusually sleepy and agreed to have surgery to remove the lesion. When I heard about full anesthesia for operation, that I have done myself with local anesthesia in heath centers I lost all fait to this plan. My oncologist and my parents believe strongly, that molecular profiling for this lesion will work better, than molecular profiling in my asps before I have no idea why. Before surgery cediranib was stopped and naturally brain swelling turned worse. I ended up in the er. Just vhen I was supposed to have avastin and nivolunab combination for the first time. again. Cortisol was started for brain swelling. Of course cediranib will fix both problems, low blood pressure and brain swelling with diarrea, that can be controlled with dried blueperries. Ideally I get out of the er today. Re-start cediranib immediately and start avastin, aspitin and nivolumab. With that there is a bleeding risk, but it is more present than brain swelling or cortisol. So I have wasted time and experienced some unnecessary suffering, but maybe it is not too late. Really hope I get out of the er today and can start solving this mess I caused. I blame my dad a little as I know he can take it.

[D.ap]

Hello Jussi
I’m sorry to hear of your ER visit :(
Is the swelling from a tumor or from the Opdivo ?

[arojussi]

Swelling is from the tumor, but when I looked the scan the tumor didn't look bigger. Swellling was definitely new. It wasnt there 2 weeks ago. It is possible, that I have mixed response, where smaller tumors disappear first and bigger tumors grow and all we have to do is wait and start cediranib and avastin to kerp me alive during brain swelling. No problem as this was already our plan pretty much. I rather have avastin and cediranib, than dexametaxon as dexametazon increases neutrophil count and cediranib lowers it. One common crage 3 side-effect from cediranib is indeed neutrophenia, plus I really hate dexametasone`s side-effects.

Good news doctor Kononen actually came up a good plan to increase immunotherapy`s reponse rate. Radiating heart met itself as Ivan suggested. Naturally radiation cant be lethal, but it can attract t-cells like ut did for my subcutaneous met. Subcutaneous met was 15 mm in diameter, so it could have been too small target, to achieve systemic abscopal effect. Lets see if I remember numbers correctly. For asps disease control rate was 78 %. For any cancer patient with rheumatic immunotherapy related side-effects response rate was 85.6. These are not bad numbers.

My heart rate still goes under 70 after cross-trainer. As radiation to heart met will most likely damage the heart permanently I would still like to see one more scan before adding it. So for tomorrow plan is to add avastin to cediranib and Opdivo.

Interestingly subcutaneous lesion, that I consider as acne is important here as it has turned softer and little smaller, so if it is a met all is going good and it is just happening slowly. If it is acne, then this lesion tells us nothing. I have added local acne cream to lesion lately.

[D.ap]

Jussi
Was bloodwork performed to check white blood counts at the ER?

[arojussi]

Neutrophil:lymphocyte ratio is 2. Had first avastin with nivo. We wait a moth if no response we add radiation to heart met itself. It will definitely damage coronary arteries, but petter than dead.

[Olga]

Probably PET could be informative in this situation, to assess the cardiac tumor response.

[arojussi]

That actuallly might help as radiation damage from pet-scan is meaningless at this Point.

There is no certainty in my situation, but as my heart rate is staying normal. Today morning 75 and neutrophil/lymphocyte ratio was 2 I find it hard to believe, that growth would be true progression. Basically heart function has improved radically and white blood cell counts fits perfectly to treatment response and we are still seeing immunological swelling in the scans. As these rype of responses are not rare in asps, pseudoprogression fits petter than true progression. With any other cancer I wouldnt be this optimistic. Er-trip was caused by epileptic seisure. So in theory same thing that happened in my heart met, before heart rate turned normal is now happening in brain mets. Apparently I have very weird response, but it still makes more sense, than growth.

[D.ap]

Hi Jussi
Two things
1) PET can in actual time show delivery of meds to heart and the hearts reaction to said delivery , is my understanding .

http://jnm.snmjournals.org/content/50/1/88.full

2) are you prone to epileptic seizures or was this the result of the swelling ?
Are you now on an anti seizure Med ?

[arojussi]

I imagined, that pet shows metabolic actity more accurately than regular ct. That is why it might add information to cardiac mri. Unfortunately pet isnt gated scan, so alone it isnt very usefull. So I would start with cardiac mri, brain mri and chest ct and add pet if neccessery.

Seisure was caused by effusion caused by left parietal met. Effusion came back after I stopped cediranib for subcutaneous lesion surgery, that I cancelled. Reallly stupid. Well cediranib was restarted after I left er and avastin was added. Also antiseisure med was started just in case.

[arojussi]

The beauty of this situation is that adding avastin should achieve at least some response visible in regular scan either shrinkage or hole in the tumor. Allowing us to continue immunotherapy, avastin and cediranib before immunotherapy kicks in. As tki acts fast, but responses wont last and opdivo is the opposite adding both makes sense.

[D.ap]

Jussi
Please check your get on board with your pharmacy folks to make absolutely sure there is NO interaction with ANY of your meds you are taking .
Love

[arojussi]

Question is is there severe enough interacttion, that I should change or drop some medicines. I didnt find any severe interactions yet. Risks are big, but this is safer than doing nothing and way safer than radiating heart met.

[D.ap]

Jussi
Can I pm you ?
Look out for possible side affects,down the road .

[Olga]

I do not think that the combination of avastin and cediranib were tested for safety. I am not sure it makes sense to take both of them - they both are used to alleviate edema in brain tumors and one of them is usually enough?

[arojussi]

Basically you are correct, but cediranib can cause neutropenia and increase blood pressure, both which I want, so using avastin and cediranib is experimental treatment and legal risk for hospital giving the treatment, but as my blood pressure has improved after starting this combo and neutrophil:lymphocyte ratio is 2, I really consider continuing with this safer, than stopping cediranib. Diarrea can be managed with dried blueperries. Heart rate was 72 tonight. As things are going really well I really dont feel confonrtable changing medications just because combination is experimental. Of course if I will experience devastating side-effects I could completely change my mind. As if this doesnt work back-up plan is to radiate heart tumor itself I really hope, that can be avoided. Compared compared to heart met radiation this is safe.