Seth from South Korea, Dx november 2017

ASPS patients post updates here, including tales of success :)
Olga
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Re: Seth from South Korea, Dx november 2017

Post by Olga »

Seth - I apologize for using your topic for other conversation:)
Dadoona - this is Ivan's topic:
http://www.cureasps.org/forum/viewtopic.php?f=4&t=66
read the last posts.
This is his up-to-date experience with Keytruda and what was done:
http://www.cureasps.org/forum/viewtopic.php?f=76&t=1506
Yes he had SBRT. He is already 6 months on Keytruda and so far the result was very good.
The article was like probably this one (I am not sure):
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4167629/
There is no radiosurgery between the compared modalities but it would be closer to the heat based ablations ()versus freezing based as the cryoablation):

Review
Table 3
Cytokine Levels and Leukocyte Count Fold Change Following Thermal Ablation
Ablation Type
we are interested in IL-6 changes as this is the first step for PD-1 chain activation
cryoablation produces a whooping 54 fold increase but its variability is scary ± 85, i.e. there are going to be the patients with the fall of 85 fold (for -)
Olga
seth94
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Re: Seth from South Korea, Dx november 2017

Post by seth94 »

Yesterday, i took a regular lung ct scan and brain mri.
Lung ct : still no change in size and no new met. Thanks to pazo.
Brain mri : no met in brain. Skull met that was operated is clear (no recurrence). Skull met that was cyberknifed is partial response! It’s being attacked.

And Olga, thank you for your thoughtful explanation about abscopal effect!!
D.ap
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Re: Seth from South Korea, Dx november 2017

Post by D.ap »

seth94 wrote:Yesterday, i took a regular lung ct scan and brain mri.
Lung ct : still no change in size and no new met. Thanks to pazo.
Brain mri : no met in brain. Skull met that was operated is claer(no recurrence). Skull met that was cyberknifed is partial response! It’s being attacked.

And Olga, thank you for your thoghtful explanation about abscopal effect!!

Seth

Good news with all reports !
Will you be re treating 2.5 skull met , soon if it shows regrowth?
I would venture to say there is edema around the tumor ?
Good to hear from you. : )
Debbie
seth94
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Re: Seth from South Korea, Dx november 2017

Post by seth94 »

My doctor said effect of cyberknife will maintain almost one year.
If it regrow, then i will take a cyberknife again(maybe it’s possible).

I don’t know there is edema. I don’t have any symptom besides slight headache sometimes. Before cyberknife, it was round shape and dense. After cyberknife, it is jelly(?) shape and has many holes. Size of met does not changed.
D.ap
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Re: Seth from South Korea, Dx november 2017

Post by D.ap »

Seth,
Have you had to take any steriods ?
How often will your brain be scanned ? Every 3 months maybe ?
The radiologist will look for” lit up “ activity and growth , if my memory serves me correctly.
It was 3 years ago that we had to treat a 1cm brain tumor, on our son. We began with SRS and ended with LITT(neurablation) of the 1 cm tumor had not been stopped with the SRS (radiation) treatments , as it was interpreted by the team of doctors .

The LITT was used to do 2 things. The first to directly inset a wire into the tumor, with the aid of a MRI ,to kill it by heat in the event it was growing .
The second idea was to destroy it to the point that the necrotic tumor would break down and move out of the brain more fluently . In the event it was the brain tumor causing necrosis / swelling .

Treated brain tumors
can be life threatening . And it’s not always apparent by the scans what is actually causing swelling , after radiation treatments.

https://www.oncolink.org/cancers/brain- ... ain-tumors

The brain is very tricky to deal with when dealing with foreign and infectious type matter, if that makes sense .
That’s one of many reasons ,why edema can possibly happen.
A really good doc / radiologist team needs to be able to read and plan with scan results . To whether there is growth and or necrosis , causing swelling .

Here’s the SRS
https://www.radiologyinfo.org/en/amp/stereotactic.html

Here’s a link to LITT(the tool used )
And or the procedure neuroablation.

It’s a relatively new procedure so a lot of oncs aren’t aware of it.


https://www.hopkinsmedicine.org/healthl ... erAblation


Hope I haven’t overwhelmed you with info .
: /
Debbie
seth94
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Re: Seth from South Korea, Dx november 2017

Post by seth94 »

Yes I took a steroid 10 days after cyberknife.

My first brain scan was 3months ago, and my next scan will be in 6months later.

My neurosurgeon and radiologist had same opinion to my skull met(it’s under the brain) that is being treated. And i think if there was edema, my neurosurgeon or radiologist would mention about edema. My neurosurgeon showed my brain scan to me and explained very minutely.

Thank you for your thoughtful explanation about LITT.
Is it possible to skull met? I think this ablation is only possible in USA. Newspaper report said there is no equipment for LITT in Korea...

If i have more information, the chance that i live longer will high!! So, thank you for your information!!
D.ap
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Re: Seth from South Korea, Dx november 2017

Post by D.ap »

Hello again Seth
I don’t know if LITT would be able to be used on bone?
Did your docs stop steroids because there is no swelling?
I’d not wait 6 months to re-scan . You need to know if swelling / growth is happening so you can retreat the tumor. 3 months max . ASPS can and will grow very fast in the brain .

Olga and or others familiar with cyberknife, could answer how long between treatments before it could be retreated.
Debbie
D.ap
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Re: Seth from South Korea, Dx november 2017

Post by D.ap »

Brain mets discussed

The metastatic Brain section of the forum
http://www.cureasps.org/forum/viewforum.php?f=8


Postradiation imaging changes in the CNS: how can we differentiate between treatment effect and disease progression?

http://www.cureasps.org/forum/viewtopic.php?f=8&t=1373
Debbie
seth94
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Re: Seth from South Korea, Dx november 2017

Post by seth94 »

My doctor stopped steroid because there is no symptom of swelling.

And 7/27 scanning result said there is no interval change in size of met with 4/3 scanning. After cyberknife, there are many holes in met. So my neurosurgeon and radiologist judged met is being dead.

I wish that ‘size increase because of swelling’ + ‘size decrease because of effect of cyberknife’ = ‘no change in size’.

My met is not in the brain but in the skull(right under the brain). There is no met in brain. So my doctor said 6 months after scan is ok.

Am i too naive that thinking 6 months after scan is ok?

And thank you again Debbie sharing your point of view and information!!
Last edited by seth94 on Mon Jul 30, 2018 5:14 pm, edited 1 time in total.
arojussi
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Re: Seth from South Korea, Dx november 2017

Post by arojussi »

To me holes in the met sounds radiation damage, rather than tumor growth. But I am not sure.
seth94
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Re: Seth from South Korea, Dx november 2017

Post by seth94 »

‘Radiation damage’ means met is damaged by radiation,
right?? Thank you for your opinion Jussi!!
arojussi
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Re: Seth from South Korea, Dx november 2017

Post by arojussi »

Basically yes.
Olga
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Re: Seth from South Korea, Dx november 2017

Post by Olga »

Seth, so far the situation with the skull met is not a concern - it was treated, getting smaller and you are feeling well. I would ask to be scanned once in 3 months for few times as it was a bit to big for the radiosurgery and there is a risk that some viable tissue could be left there, some alive tumor cells. So they should carefully watch it (brain MRI with the contrast) and re-treat if needed. The brain metastases are rarely single, so they need to watch for something else to appear and radiosurgery it on a smaller size - the best size to treat it using radiosurgery is just few mm.
Olga
arojussi
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Re: Seth from South Korea, Dx november 2017

Post by arojussi »

Scanning often is very smart as treating tumors as smallest possible size is much cheaper and changes of success are better. So I would have brain mri every 3 moths. As scanning often actually saves money in the long term, I believe smart doctor will agree to order scans.
D.ap
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Re: Seth from South Korea, Dx november 2017

Post by D.ap »

I once again agree , 3 months and sooner if heaches are uncomfortable .
Debbie
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