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

[arojussi]

Doctor Kononen once said that, traditional radiation might be better, than stereotactic radiation for abscopal effect. Now doctor from private hospital said, that small dose diffuse radiation in healthy tissue around tumor might be most effective. Supporting doctor Kononen`s opinion. If I understood correctly.

Private hospital doctor also stated, that we should stay in safe doses as there is no evidence that bigger doses are better. I know that for abscopal effect there need to be relatively high dose like 6-8 gy fractions. As 8 gy in 3 fractions seems to be most studied I go with that. There is no safe amount of radiation, it is always a risk. High dose single fraction would most likely be counterproductive. Using cortisol for side-effects is relatively safe, but antibiotics are much more risky.

Around 24 hours after my first opdivo yervoy infusion My cough turned way worse. I consider it as nivolumab`s side-effect, but it drives my dad crazy. I don't have cough, when I run. I mostly cough when I eat.

[D.ap]

Been reading on lymphatic vessels being important avenues to aid ici attack( lymphocytes ), as well as cleanup when tumor benign or cancerous , involvement are being attacked after usage of Ici and then having anti-CTLA MAB on board . Lowering CD levels ?
Correct me if I’m wrong , creating lower CD levels?

What degree possible lymphatic vessel damage can be projected by your team ?

[arojussi]

So I spent whole night thinking if we should radiate subcutaneous met or not. I red Ivan`S story and blog, that Olga linked.
Yes radiating subcutaneous met will kill white blood cells, that are fighting the tumor, but it is not clear, what this means clinically. However there is clear scientific evidence saying, that adding fractioned radiation to immunotherapy is helpfull. I dont have time to wait until they figure biological mechanism behind this out. As heart met can kill me at any moment we really dont have time to see how it reacts to immunotherapy alone. Based on current scientific evidence I believe my changes are better if we radiate. This is definitely gamble, but I try to place my bet as wise as possible.

[Olga]

Few questions:
1. Do you have any means to objectively estimate if there is a reduction in the size of this subcutaneous tumor?
2. Did you see if there was a description of the met locations allowed for the inclusion into the SBRT+immunotherapy trials? You can ask the clinical trial investigators if it is not listed. Perhaps they did not allow to irradiate the mets when the skin damage would be expected?
3. What is the expected dose to the skin and subcutaneous layer and what is the expected size of the wound.
I briefly reviewed the irradiation damage to the skin and they say it is at max 30 days after the radiation end?

When we consulted Dr.Razak, the oncologist from Toronto who has treated ASPS patients on clinical trials and off label with immunotherapy drugs, he said to have first round scans, to see if there is a response and if not, add the SBRT. To non-responding met.
We would need to consult an immunologist to figure out what is going to happen if the responding met is irradiated, and if the wound can interfere with the immune system at work.

[Olga]

Just to add. I have contacted one clinical trial investigator in Dec.2017 when we started Keytruda and were struggling with figuring out the radiation addition. My question back then was - if we have 2 heart mets, 2 pancreatic mets, one soft tissue met and some lung mets - which one would be more likely to produce the immune signal if irradiated/what dose-regimen to use - he said we just do not know yet, pick the safe location.

[arojussi]

So as I have subcutaneous met right under the skin, around 3 lung mets and 4 possible brain mets. Brain lesions are most likely just pseodoprogression from previous radiation. As brains are definitely very radiation sensitive none of these mets opviously isnt a safe target. Skin`s radiation sensitivity is intermediate. As 2 oncologist seems to believe, that standard radiation is better than stereotactic for apscobal effect, I consider subcutaneous met to be safest Target. I really dont understand, why everybody mostly my dad, is so scared of the skin damage. Based on the fact, that Ivan had soft tissue met radiated and he gained mirage-response to immunotherapy I would like to use similar approach.

Sorry I couldnt find out, what was Ivan`s soft tissue met`s size after first infusion, but before starting fractioned radiation. I really doupt, that immunologist can give me anything more than educated quess, about how radiating responsive lesion will affect to my immunological response. Multiple studies supporting radiation immunotherapy combination, beats educated quesses. As Dr Kononen is strictly man of science I have some respect for he`s opinions. Actually we both considered targeting subcutaneous met for abscopal effect, if I would need to try immunotherapy again. This was before we knew about heart Met. Now I am in immediate danger, so obviously I am very scared and want to go with the plan we made back them when I wasnt affected by fear.

[arojussi]

So private hospital`s head of radiation signed paper saying: up to five 8 gy fractions are save. Some redness is almost certain, but severe skin dmage is very unlikely. If worst happen and damage to the skin is severe dosent of radiation oncology (head of radiation in private hospital docrates) believes it can be managed with local treatments and we have world class plasic surgeon Erkki Tukiainen in our corner, so if skin damage is severe we can deal with it without antibiotics. As lesion is very superficial, changes of dangerous infection spreading to muscles and bones after radiation are minimal. As local infection in skin most likely isnt life treatening, it most likely doesnt need systemic antibiotics.
There was one trial about combined radiation and immunotherapy for breast cancer with subcutaneous metastases, so I dont believe skin damage caused by radiation will effect to Immunotherapy.

So I strongly believe, that radiation is best, as best responses are achieved by patient`s who had some radiation before or during immunotherapy. If we a chieve radical response, then Imight not need surgery for heart met. If we achieve some small response, then I definitely will have heart surgery if it becomes posdible.

[Olga]

Ivan's soft tissue met was deeply located 25 mm nodule, far away from the skin and any other structure. He did not have any skin damage at all as the treatment was done stereotactically with the rays coming from the different angles - that unit moves around.

[arojussi]

I dont have energy to read any more studies. I have decided to go ahead with the radiation 8 gy in 3 fractions.cediranib is still stopped, as it gives me red rash to everywhere where skin rubs against something and as we plan to radiate area in front side of my elbow joint, where skin rubs agains skin. I stopped Cediranib for savety. Also diarrea is improving. Of course if doctor tells me something devastating tomorrow, before starting radiation we must rethink everything again. So today is the last change to convinge me not to go ahead with radiation. Tomorow morning it will be too late.

[Bonni Hess]

Dear Jussi, I am sorry that I have been absent from the radiation/immunotherapy/abscopal effect discussion which I have been following with great interest, but Brittany has no personal experience with this very promising new treatment approach so I have not had any anecdotal information or knowledge to contribute and share. Because the abscopal treatment approach is relatively new and there is little documented information currently available about it, it makes the treatment decision very difficult, but Olga, Ivan, and Debbie have offered some excellent precautionary advice and insights and you seem to be very well researched about the issues involved so it seems that you are making the best decision possible based on available information and your personal opinion. As always, my most caring thoughts and very best wishes are with you for a very successful treatment outcome, and I will be anxiously awaiting your updates. Holding you very close in my heart and thoughts with deepest caring, healing wishes, and continued Hope, Bonni

[D.ap]

Jussi

Like Bonni, I truly wish the best with your treatment .
How quickly will you resume the cediranib , after your radiation treatment ?

Love and prayers ,

[arojussi]

I would imagine at least week or 2 break before restarting it after radiation. Maybe longer.

[Olga]

It looks like we have more questions than answers anyway. So you can just decide whatever you feel better, with about the same probability it is going to work. I usually take more time for researching and consulting, but if you feel you do not have time for that, probably you have a valid reason to feel that way, as the subjective way the patient feels, often has an underlying objective reason. Good luck. It is good that the radiation oncologist is confident there is going to be no big damage to a skin. Latest clinical trial combining the radiation with Keytruda uses 3*8 spaced out 48-72 hours in between treatments.

[Jorge]

Hi Jussi,
I recall radiologist prescribe some kind of cream to use on the skin before radiation, but I don't know the exact name. You can ask your radiologist or dermatologist for it and prepare for how to protect the skin after radiation.

Good luck,
Lynette

[arojussi]

I checked, that basic moisturising cream after radiation and before sleep can be beneficial. I suppose cortisol creams can be tried if I develop severe redness. I had first 8 gy today, cardiologist and echo tomorrow, 2. Fraction day after tomorrow and final fraction in friday. If I develop sevre skin damage then final fraction will be moved to monday.

Pro-bnop has increased from 1050 to little over 1200. Could be just random change or taking break from cediranib can affect to swelling around heart. As ti can reduce swelling in the brains why not around heart as well. Doctor was still able to hear some abnormal sound from my heart, but it might just be the sound of blood flowing.


Alea iasta est.