Jenny Apple #3 Dying for $$$?

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Saydee

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Thanks to @Make sense of it! for thread title.

Recap: Kyle posted to say they are in San Diego with kids and Jenny’s sister. Jenny is struggling with side effects of Proton Beam therapy
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@Marchonegypt im replying to you here because the other thread will be closed shortly :)

Jenny’s brain and spinal fluid is far more important to tackle. Pleural effusions can be managed to a degree. A second lung drain could be fitted if needed. Heart fluid (pericardial effusion) that can be drained in an emergency. Neither are ideal, but the brain is less forgiving! If radiotherapy wasn’t started quickly, Jenny would start having seizures like Sarah did. Timing is critical! There was no time to waste.
 
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Saydee said:
Thanks to @Make sense of it! for thread title.

Recap: Kyle posted to say they are in San Diego with kids and Jenny’s sister. Jenny is struggling with side effects of Proton Beam therapy
---
@Marchonegypt im replying to you here because the other thread will be closed shortly :)

Jenny’s brain and spinal fluid is far more important to tackle. Pleural effusions can be managed to a degree. A second lung drain could be fitted if needed. Heart fluid (pericardial effusion) that can be drained in an emergency. Neither are ideal, but the brain is less forgiving! If radiotherapy wasn’t started quickly, Jenny would start having seizures like Sarah did. Timing is critical! There was no time to waste.
Click to expand...
Thanks Saydee 💚
 
There is someone who wrote comments on MKLovlif's latest video, the one mentioning that Jenny's channel has reached 100,000 subscribers, who seems convinced that proton beam therapy will actually serve to reduce rather than increase Jenny's time.
Is there any truth to this based on previous medical cases?

Maybe people think that 'stirring things around' near the brain causes more damage than good. Even though proton beam therapy is less damaging than photon therapy (traditional radiation) because the proton beam stops at the tumor(s) and doesn't go beyond it as occurs with traditional radiation, the proton beam still has to traverse tissues to get to the tumor(s). Those tissues will be damaged (hence, the hair falling out in the regions where the proton beam is directed). Since the cancer is in the fluid right below the scalp, most likely the proton beams don't go into the brain itself, as the beam must be calibrated (energy, intensity) so as not to reach further into the brain itself.

Also, from the limited knowledge I have of proton beam therapy, it seems that the beam needs to be directed at the tumor(s) specifically. This is where I am confused because Kyle said that the entire fluid around her cranium will be treated. Proton therapy involves very high energy beams, so I wouldn't naturally think that the entire head would be irradiated but that the beam would focus on the actual tumor(s). True, or false?
 
TryingMyBest said:
It's fluid not solid tumors. She is also getting spine proton therapy since it's spinal fluid. She does have brain mets but they didn't say those are being treated.
Click to expand...
Ok, but then that doesn't correspond with images I've seen of proton beam therapy whereby it is directed at a tumor. So, the proton beam is directed to the entire fluid region in the perimeter of the cranium is what you imply. How that doesn't damage other cells in the fluid is a mystery to me.
 
c.sabatier said:
Ok, but then that doesn't correspond with images I've seen of proton beam therapy whereby it is directed at a tumor. So, the proton beam is directed to the entire fluid region in the perimeter of the cranium is what you imply. How that doesn't damage other cells in the fluid is a mystery to me.
Click to expand...
ya got me.... usually proton therapy is targeted at a solid tumor. Saydee probably knows. They keep saying it's in the fluid but maybe it's the meninges that the beam is targeting.
 
Everyone stop worrying -- thanks to gynnakray3801, Jenny is now CURED!

Screen Shot 2023-08-02 at 7.31.17 PM.png


Anyway, I watched a minute of Kyle's video and he says she's sleeping 99% (or 60% in his correction) of the day. I'm assuming that they only expect her to be asleep practically all the time just during this radiation process, right? In the video where she announced her prognosis and they talked about possible effects to her brain, Jenny said she doesn't want to be alive if she's not mentally "here." So I'm assuming that they're expecting her to sleep less once the proton therapy is done?
 
TryingMyBest said:
ya got me.... usually proton therapy is targeted at a solid tumor. Saydee probably knows. They keep saying it's in the fluid but maybe it's the meninges that the beam is targeting.
Click to expand...
Whether it's the fluid or the meninges that are targeted, the question is whether the proton beam is targeted at a specific area where tumor cells are, or is the proton beam directed on the entire fluid or meninges as a whole? If it is the latter scenario, how isn't the fluid or meninges adversely affected as a whole?
 
c.sabatier said:
Whether it's the fluid or the meninges that are targeted, the question is whether the proton beam is targeted at a specific area where tumor cells are, or is the proton beam directed on the entire fluid or meninges as a whole? If it is the latter scenario, how isn't the fluid or meninges adversely affected as a whole?
Click to expand...
Hmmmm.... well if the fluid is carrying the cancer than wouldn't it need to be "cleaned" too along with the meninges?
 

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@c.sabatier
Change leukemia cells to secondary lung cancer cells in this piece and you will then have your answers. We all, you,me and Jenny have this fluid (cerebrospinal fluid) except in Jennys case, lung cancer cells have invaded the fluid and are present. The spinal tap will have confirmed the presence of them.




What benefits do patients have from using proton radiotherapy?

Due to the limited possibilities of systemic treatment, irradiation of the entire CNS area is advantageous. This consists in irradiation of the brain, spinal cord, spaces where cerebrospinal fluid (CSF) circulates, craniospinal axis. The aim is also to get to the hard-to-reach leukaemia cells, as well as those that are no longer sensitive to chemotherapy or biological therapy.

Patients who benefit the most from proton radiotherapy are the ones who, despite intensive systemic treatment, have

  • a positive finding of leukemic cells in the cerebrospinal fluid;
  • a positive cerebrospinal fluid at the time of diagnosis;
  • leukemic lesions in the brain or spinal cord.
protontherapy.ie

Proton Therapy for Central Nervous System Leukaemia | Proton Therapy IRL

Interview with Dr Kateřina Dědečková on the possibilities of treatment of hematologic diseases with proton radiotherapy. According to the latest recommendations of the International Lymphoma Radiation Oncology Group (ILROG), radiotherapy is also suitable for some patients diagnosed with...
protontherapy.ie protontherapy.ie
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c.sabatier said:
Ok, but then that doesn't correspond with images I've seen of proton beam therapy whereby it is directed at a tumor. So, the proton beam is directed to the entire fluid region in the perimeter of the cranium is what you imply. How that doesn't damage other cells in the fluid is a mystery to me.
Click to expand...
If Jenny wants to extend life, this is the only option due to the protective blood brain barrier.
Think of it as some patients have one single brain tumour and the bean is directed right at that brain tumour.
In Jenny's case the entire area will be targeted. Treatments can't penetrate the blood brain barrier, therefore radiation is required.
Due to the limited possibilities of systemic treatment, irradiation of the entire CNS area is advantageous. 'This consists in irradiation of the brain, spinal cord, spaces where cerebrospinal fluid (CSF) circulates, craniospinal axis.'
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girlwhowrites said:
Everyone stop worrying -- thanks to gynnakray3801, Jenny is now CURED!

View attachment 2352724 q

Anyway, I watched a minute of Kyle's video and he says she's sleeping 99% (or 60% in his correction) of the day. I'm assuming that they only expect her to be asleep practically all the time just during this radiation process, right? In the video where she announced her prognosis and they talked about possible effects to her brain, Jenny said she doesn't want to be alive if she's not mentally "here." So I'm assuming that they're expecting her to sleep less once the proton therapy is done?
Click to expand...

No amount of money would have allowed me to deal with those types of subscribers.
I noticed Kyle said 99% of the time but the text changed to 60% of the time. Therefore Jenny is sleeping around 14 hours per day, this will pass when PB therapy ends. Any radiation to the brain is heavy duty stuff.
@c.sabatier raised a good valid point earlier about the damage brain radiation can do? We have to remember that her doctors aren't looking to cure Jenny. All brain radiation is 'palliative', used to extend life, not cure. Without intervention, Jennys brain would swell, inflammation would go haywire, high dose steroids would be needed. Most have us have witnessed what Sarah from the POG family experienced. What Emily Haywood experienced. Tiredness/Fatigue is to be expected, but if treatment is successful..... it will pass.
 
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TryingMyBest said:
Is his channel monetized? This video has 150k views so nice chunk of change. Having her get the bad prognosis is paying off for his channel.
Click to expand...

I unpaused my AdBlock for one of his videos, and immediately a video commercial played and banner ads appeared next to the video, so he's most likely monetized. He met the requirements a long time ago (1K subscribers and 4K watch hours), especially since his videos are long. His second video alone would've gotten him over 4K watch hours, so he probably joined the partner program ages ago.
 
Saydee said:
@c.sabatier
Change leukemia cells to secondary lung cancer cells in this piece and you will then have your answers. We all, you,me and Jenny have this fluid (cerebrospinal fluid) except in Jennys case, lung cancer cells have invaded the fluid and are present. The spinal tap will have confirmed the presence of them.




What benefits do patients have from using proton radiotherapy?

Due to the limited possibilities of systemic treatment, irradiation of the entire CNS area is advantageous. This consists in irradiation of the brain, spinal cord, spaces where cerebrospinal fluid (CSF) circulates, craniospinal axis. The aim is also to get to the hard-to-reach leukaemia cells, as well as those that are no longer sensitive to chemotherapy or biological therapy.

Patients who benefit the most from proton radiotherapy are the ones who, despite intensive systemic treatment, have

  • a positive finding of leukemic cells in the cerebrospinal fluid;
  • a positive cerebrospinal fluid at the time of diagnosis;
  • leukemic lesions in the brain or spinal cord.
protontherapy.ie

Proton Therapy for Central Nervous System Leukaemia | Proton Therapy IRL

Interview with Dr Kateřina Dědečková on the possibilities of treatment of hematologic diseases with proton radiotherapy. According to the latest recommendations of the International Lymphoma Radiation Oncology Group (ILROG), radiotherapy is also suitable for some patients diagnosed with...
protontherapy.ie protontherapy.ie
---

If Jenny wants to extend life, this is the only option due to the protective blood brain barrier.
Think of it as some patients have one single brain tumour and the bean is directed right at that brain tumour.
In Jenny's case the entire area will be targeted. Treatments can't penetrate the blood brain barrier, therefore radiation is required.
Due to the limited possibilities of systemic treatment, irradiation of the entire CNS area is advantageous. 'This consists in irradiation of the brain, spinal cord, spaces where cerebrospinal fluid (CSF) circulates, craniospinal axis.'
---


No amount of money would have allowed me to deal with those types of subscribers.
I noticed Kyle said 99% of the time but the text changed to 60% of the time. Therefore Jenny is sleeping around 14 hours per day, this will pass when PB therapy ends. Any radiation to the brain is heavy duty stuff.
@c.sabatier raised a good valid point earlier about the damage brain radiation can do? We have to remember that her doctors aren't looking to cure Jenny. All brain radiation is 'palliative', used to extend life, not cure. Without intervention, Jennys brain would swell, inflammation would go haywire, high dose steroids would be needed. Most have us have witnessed what Sarah from the POG family experienced. What Emily Haywood experienced. Tiredness/Fatigue is to be expected, but if treatment is successful..... it will pass.
Click to expand...
So she truly is not only getting whole brain radiation but her entire spinal column treated? That's a lot of real estate to irradiate. No wonder she is tired. I wonder if it also will create radiation burns like regular rads. She did say she had to be naked and she needed to do some lady maintenance. I was thinking that would be last worry at that point.
 
Time for some much needed comic relief ... but it comes with a dose of controversy LOL.This is a slick ad for a proton center in New Jersey which includes the testimonials of 3 prostate cancer patients (I'm pretty sure "James" is a prostate cancer patient as are the other 2 guys). But I was laughing at patient "Bill" who was amazed that the staff called him by his name and not a number, and who could still go hiking after getting zapped by the magic beam. 😁 Patient "James" testified that it SEEMED like the staff knew what they were doing and that the doctors SEEMED concerned. 🤣🤣 Heck, James liked ringing the bell so much he rang it 5 times !! 🔔🔔🔔🔔🔔 And look .. the other guy was told he was cured as soon as he finished treatment !! Wowza!! That is one heck of a magic beam !!!

My comments: using proton therapy for early stage prostate cancer is a controversial issue. It costs a lot a lot a lot more than conventional radiation therapy for one thing and the outcomes don't warrant the extra cost. But look!! There's a fireplace in the lobby and James is ringing that dang bell again 😁
 
mayday mayday said:
Time for some much needed comic relief ... but it comes with a dose of controversy LOL.This is a slick ad for a proton center in New Jersey which includes the testimonials of 3 prostate cancer patients (I'm pretty sure "James" is a prostate cancer patient as are the other 2 guys). But I was laughing at patient "Bill" who was amazed that the staff called him by his name and not a number, and who could still go hiking after getting zapped by the magic beam. 😁 Patient "James" testified that it SEEMED like the staff knew what they were doing and that the doctors SEEMED concerned. 🤣🤣 Heck, James liked ringing the bell so much he rang it 5 times !! 🔔🔔🔔🔔🔔 And look .. the other guy was told he was cured as soon as he finished treatment !! Wowza!! That is one heck of a magic beam !!!

My comments: using proton therapy for early stage prostate cancer is a controversial issue. It costs a lot a lot a lot more than conventional radiation therapy for one thing and the outcomes don't warrant the extra cost. But look!! There's a fireplace in the lobby and James is ringing that dang bell again 😁
Click to expand...

I'm sorry but my mind must be that of a middle school boy because I'm laughing about the prostate proton center's president's last name. Perfect!
 
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Sorry if this has already been posted - sounds like it's worth it?

"The study involved MSK patients with lung or breast cancer whose disease had spread to the fluid and tissues around the brain and spinal cord. They were randomly assigned to receive either proton therapy or conventional radiation treatment. People who received proton therapy had a median progression-free survival of 7.5 months compared with 2.3 months for those receiving conventional radiation. Those who received proton therapy lived a median of 9.9 months, compared with just 6.0 months for those receiving conventional radiation. Side effects were similar between groups"

www.mskcc.org

Proton Therapy for Leptomeningeal Metastasis Could Be a Major Advance

Learn how proton therapy can be an effective new treatment for leptomeningeal metastasis.
www.mskcc.org www.mskcc.org
 
Elpis said:
Sorry if this has already been posted - sounds like it's worth it?

"The study involved MSK patients with lung or breast cancer whose disease had spread to the fluid and tissues around the brain and spinal cord. They were randomly assigned to receive either proton therapy or conventional radiation treatment. People who received proton therapy had a median progression-free survival of 7.5 months compared with 2.3 months for those receiving conventional radiation. Those who received proton therapy lived a median of 9.9 months, compared with just 6.0 months for those receiving conventional radiation. Side effects were similar between groups"

www.mskcc.org

Proton Therapy for Leptomeningeal Metastasis Could Be a Major Advance

Learn how proton therapy can be an effective new treatment for leptomeningeal metastasis.
www.mskcc.org www.mskcc.org
Click to expand...
Almost 10 months vs 6 months is great but I guess that also depends on the progression of the actual disease in the lungs. I think her oncologist told her 6 to 9 mos.
 
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