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

[arojussi]

It is extremy high dose. I only ate that much, because it was the only way to control ceriranib associated diarrea. Now that I am of cediranib I eat just 150 - 200 mg daily. Diarrea is the nain reason why I hadnt re-started cediranib yet.

[arojussi]

Effusion in my pericardium is practically gone. Tumor is so big that cardiologist cant analyse if it has shrunk during cardiac echo. (Mistakenly wrote cardiac mri. Corrected it to echo.)

The radiated skin is very red and skin is little broken. Nothing suprising and as long as there is no infection there is no problem. Basically we just keep wound clean with saline solution and cover the skin between washes. T-cell avtivation in radiation site is definitely achieved, but I dont know if this means anything to systemic response. Week ago I was worried if skin wasnt red enough for t-cell activation.

[D.ap]

Hi Jussi
The fluid being down is excellent news. : )
So you’ve been having an echo performed to view the tumor?

[arojussi]

Yes echo from my giant tumor and I suppose there is heart somewhere under it also. Also 3 infusion

[Olga]

Are any other scans going to be done to figure out the response? Are you going to have a cardiac MRI or not (have you already had it or it was a cardiac echo I am confused now:)) Do you have other tumors that can be measured?

[arojussi]

Yesteday I just had cardiac echo as it is easy and quick, so it was convinient to have it at the same day as infusion. First cardiac mri was done around moth after starting immunotherapy. So we dont really have baseline cardiac mri to compare my results. As opdivo and yervoy were started at the same day ct confirmed my cardiac met 6 weeks ago. Because my phaseline scan was shest ct I agreed to have another chest ct in third day of september.

[arojussi]

Using other mets to monitor my response is really hard. My brain mets were all treated with radiosurgeries. Before starting immunotherapy there were growth in 4 radiated mets, but they were still smaller than before radiation. So growth can be just radiation damage. There is still few lung mets left. I think exact number is 3 all smaller than 1 cm. My subcuraneous lesion shrunk at least 3 mm before starting radiation. To me it looks like I am responding, but I am not sure yet. So using 7 cm heart tumor to monitor my response is easist solution that I can think of. Of course chest ct and brain mri will give little more information.

[D.ap]

Hello Jussi
How is the fluid build up/ fluid depletion being monitored ?
Are you watching your extremities etc ..
How’s your cough these days ?

[arojussi]

Cardiologist simply performs ultrasound from heart and compares it to previous studies. There is no fluid build up anywhere in my body expect effusion in pericardium. Cough is improving. Rest heart rate is 10 to 20 beats lower than before starting immunotherapy. If this is just placebo effect then effusion in pericardium is completely unrelated to giant heart tumor. It is possible, but it doesnt seem likely. After 3. infufusion my shoulders are very tense. I have been having severe tension headaches my whole life as I have very poor posture and I live relatively stressfull life, but the fact that this problem just turned way worse after starting immunotherapy doesnt seem likely. Good thing I like my physical therapist, so extreme musclepain is solvable problem.

[D.ap]

Jussi
I truly believe ICIs accelerate and affect a persons whole body, causing the aches.

It also has been shown to possibly intensify or create any predisposed autoimmune issues , pertaining to a patients genetics and or inheritable family history . Arthritis /diabetes /MS etc.

Josh has incorporated massage therapy/yoga into his life to help offset some of those side effects .

[D.ap]

Jussi

Of course always ,always let you doc know of any concerning symptoms .
Does this shoulder tension happen right after your
infusion ?

I’m reminded of this article that gives a physiological/ psychological ( pathological ) explanation of ICIs


“Psychological side effects of immune therapies: symptoms and pathomechanism”

http://www.cureasps.org/forum/viewtopic ... 441#p11101

[arojussi]

Infusions of yervoy and nivolumab were given wednesday and unusually severe muscle tension this friday. If there would be vomiting I would suspect brain swelling, but there is just extreme muscle tension.

[D.ap]

Jussi
I was considering infusion related issue?
The 24 hour possiblity?
Or could 72 hours be considered infusion related ?

[arojussi]

As you know I have been hoping,that shoulder tension would be immunotherapy related side-effect and now it looks even more likely.

[D.ap]

Jussi

I’m sure not wanting to make waves.:/
Can infusion be renegotiated ?
I wonder if abscopal effects could cause an increase of immune response ?
Bolstered effects?
You have multiple meds AND have the radiation sending antigens throughout your system.

I hope I used the correct term. :/
As I’m sure not a doctor.