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

Those who lost their battle with ASPS :(
D.ap
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Re: Jussi from Finland - Dx 2008

Post by D.ap »

Thank you for the explanation Jussi ..

Could the abscopal effect be creating a different immune response ? Maybe lymphocyte antigen response ?
Been reading on immuno(abscopal) responses, for a lack of medical a term ,that response from the inside out rather than outside(surface) inward .:)
Could the antigen created by the radiation be causing a different attack on your various different tumors located thru out? Not typical to just ICI by itself ?
I’d maybe stay with the ced till the mri .
But oh course you and the doctor should make that desicion.
Last edited by D.ap on Sat Oct 27, 2018 8:25 pm, edited 1 time in total.
Debbie
D.ap
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Re: Jussi from Finland - Dx 2008

Post by D.ap »

And I wanted to also say I truly agree with you that you have improved ,and I feel it’s because you are having a good response to all you’ve chosen to do to treat the heart tumor. : )
Debbie
arojussi
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Re: Jussi from Finland - Dx 2008

Post by arojussi »

Heart mri would only allow us to measure growth exactly. I trust, that thoracs ct alreary proved tumor growth with effusion still being gone.
D.ap
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Re: Jussi from Finland - Dx 2008

Post by D.ap »

Jussi

Still looking forward to the MRI report.
Keep us posted .
Good Night from the USA .
Debbie
arojussi
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Re: Jussi from Finland - Dx 2008

Post by arojussi »

So as my circadian rytm is still messed up during doctor`s appointment I agreed to have surgery to remove clinically meaningless subcutaneous met. Size 1.5 cm. So doctor can use this met and tissues near it to figure out why I am not responding to immunotherapy or response is being so slow. I dont have much fait in molecular profiling, so I think I made a mistake. Surgery 2 days. From now. Of course surgery could create abscopal effect, but it will increase crp and netrophil court. Especially if lesion is just acne pimple. I am 90 percent sure about that and surgery to remove small abscess will increase neutrophils for no reason at all. Lesion is surrounded by acne in my back also I had as big and deep lesion before and it was just acne, so I believe this is too. So now that I thought about it I would like to wait and see if lesion grows for now. It is indeed subcutaneous lesion in my back size of 15 mm It has zero clinical meaning.
Last edited by arojussi on Mon Oct 29, 2018 1:14 pm, edited 2 times in total.
arojussi
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Re: Jussi from Finland - Dx 2008

Post by arojussi »

My ekg shows either pericarditis or benign early repolarisation. Machine suggested lateral ischemia, but as it is asymptomatic during exercise I dont think that is it.
Last edited by arojussi on Mon Oct 29, 2018 2:57 pm, edited 1 time in total.
D.ap
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Re: Jussi from Finland - Dx 2008

Post by D.ap »

Jussi
What did your echo report on your left side blood flow ?
Do you have an appointment with a cardiologist ?
Possibly move up MRI appointment huh
I trust bloodwork was performed as well ?
Debbie
arojussi
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Re: Jussi from Finland - Dx 20

Post by arojussi »

I have been really annoying today as I realised I was almost sleeping during doctor`s appointment I was sure I ended up agreeing to terriple option. But lets be honest here my response to immunotherapy has been slow and inconsistent, so have to try to create abscopal effect again. Ablation, radiation and surgery have all used succesfully for this purpose in asps and we dont know yet which way is the best, so surgically removing this subcutaneous met makes perfect sense. Assuming that lesion is met and it can be removed without antibiotics. As I have removed similar lesions myself without antibiotics it shouldnt be difficult surgery.
jenhy168
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Re: Jussi from Finland - Dx 2008

Post by jenhy168 »

Is there evidence that surgical removal of a met can create abscopal effect?

Also if you're not sure if it's a met or not, a scan of some sort can't show if it's truly a met?
arojussi
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Re: Jussi from Finland - Dx 2008

Post by arojussi »

Yes. In theory as it is right under the skin we should be able to tell just by looking at it. But people get pumps all the time. So As my dad and oncologist are confident, that lesion is a met if plastic surgeon shares that vision I am just going to move ahead with surgery.
arojussi
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Re: Jussi from Finland - Dx 2008

Post by arojussi »

There is at least one asps-patient, who achieved radical systemic response after removal of subcutaneous met. It is rare, but it does happen.
D.ap
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Re: Jussi from Finland - Dx 2008

Post by D.ap »

Jussi
Will you go under anesthesia or will you be given local
anesthesia of the area ?
Debbie
arojussi
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Re: Jussi from Finland - Dx 2008

Post by arojussi »

I really would prefer local.
D.ap
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Re: Jussi from Finland - Dx 2008

Post by D.ap »

Maybe talk to your onc/ and surgeon .
To try the least immunosuppressive local anesthesia ?

https://translational-medicine.biomedce ... 018-1389-7
Let us know how you are doing . : )
Love
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Olga
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Re: Jussi from Finland - Dx 2008

Post by Olga »

Where did you see the abscopal effect to a surgery? I didn't, but the ASPS patient had a regression of the met while on the Keytruda clinical trial in the following circumstances - Brittany had all the mets responding except the small subcutaneous one, so they decided to sample this met (a biopsy), and it had regressed after the biopsy. I think the biopsy attracted the immune cells to that met and they noticed it is a tumor there! It was in her diary.
I really have no clue what is the point of this surgery at all? Besides Ivan had a pretty large inflamed pimple in his back while on Keytruda. To have a surgery just to find it was a pimple would be such a mistake. Even simple ultrasound would add some info re. its origin.
Olga
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