Jenny Apple

[TryingMyBest]

So sorry that you go through the quarterly scan anxiety
Do you think CoH will search all US trial databases?
My experience of the UK is not all oncologists search all databases. I mentioned a trial for my husband to an oncologist and he shrugged his shoulders and said he had no knowledge of it, but would refer us to the trust carrying out the trial if we wanted that. Suffice to say we quickly moved hospitals.
It amazes me that any of Jennys team watch her videos. I don't disbelieve it, but do find it odd that any of them would watch their patients videos in their private time!

I do think that CoH would have all the latest info on treatments. Her oncologist is a well known specialist in lung cancer.

I am in a colon cancer clinical trial and my cancer center has info on all trials and treatments available in the US at least.

 

[mcl92]

Me too. I'd say well yes its def not for her children to see, but the fact is that her children already see Jenny like this because they live with her
Kyle will be looking for filler content to bulk out a video and to keep their channel going.
She just looks far too weak now to withstand treatment. The last treatment really has taken its toll on Jenny hasn't it
I look at Jenny in the mums day video (taken between infusions 1 & 2) and jenny current day. Such a decline.

Do you think there is a chance some of the weakness is from over medication and not having rehab after her hospital stay? We don’t see everything that is going on, but very surprised Kyle and Jenny are not screaming at anyone to build up Jenny’s strength.

 

[Saydee]

I think one reason she looks so bad lying down and also talking at the end is that Kyle had just done his drainer duties.

And I would never judge someone based on their pain tolerance I was just making an observation. I have a high pain tolerance but that doesn't make me superior to Jenny or someone with a lower tolerance but then I don't put myself out there for thousands of people to view either.

The "drainer". What a term. Really hope he doesn't get the t'shirt. Imagine that convo... "what does that mean matey?" kyle "I am the drainer of my wifes malignant pleural fluid"
Maybe its his coping mechanism, who knows!

 

[Puffy Pox]

I think this video is def the worst that I have seen Kyle & Jenny put out.
At this stage I am not sure I would want a spouse to go through more treatment which may help, but likely won't.
Jenny is either highly medicated or declining quickly. Seeing her laid on the couch towards the end of the video? The amount of times she says "i'm tired", she literally cant do anything for herself anymore
We learnt that Jenny went for an eye test and managed to have some scans & tests.
I don't think Jenny will be with us very long.
As much as I have followed Jenny for such a long time, I now feel its time for me to stop watching. I feel like I am seeing things which I don't think should be made public.

When does it stop being informative/interesting & start becoming exploitative? That's how I feel about Sarah Pog. She's still quite "off" & has aphasia (yet is able to hawk her merchandise). For me, Jenny is still consensual although as a viewer it is beginning to feel awkward to watch. I was happy to see Jenny in better spirits & I don't think that's due to the pain meds. Her emotions still break through the fog of opiates & benzos. What's telling is her fatigue. Having to take naps at appointment & on car rides. Her pain meds certainly could be contributing, but I agree - I think she's declining. I really don't think either Jenny or Sarah will be able to proceed with treatments & if they are approved what is the risk/benefit. We'll see what Jenny's scans showed.

 

[c.sabatier]

I think this video is def the worst that I have seen Kyle & Jenny put out.
...
We learnt that Jenny went for an eye test and managed to have some scans & tests.
...

I have a different perspective: I think this video was one of the better ones since Jenny has been on oxygen. She and Kyle both seemed upbeat, and, amazingly, she has 20/20 vision! Kyle mentioned he had bad vision instead. They were organized and mentally prepared for the long day of tests and scans. At the end of a busy day like that, it is normal to be tired. Also, I don't know if there is a heat wave there or not, but extreme heat is also fatiguing. Kyle mentioned that the car got quite hot while they were filming.
Actually, I got the impression Jenny's body is very resilient and resistant. Other people might be worse off than she is with the same diagnosis. I was surprised that Jenny was able to complete the day of scans without quitting and saying she is too tired to continue.

 

[mcl92]

So sorry that you go through the quarterly scan anxiety
Do you think CoH will search all US trial databases?
My experience of the UK is not all oncologists search all databases. I mentioned a trial for my husband to an oncologist and he shrugged his shoulders and said he had no knowledge of it, but would refer us to the trust carrying out the trial if we wanted that. Suffice to say we quickly moved hospitals.
It amazes me that any of Jennys team watch her videos. I don't disbelieve it, but do find it odd that any of them would watch their patients videos in their private time!

I hope COH will search the trial databases. Jenny and Kyle imo believe they probably do.

Agree with comment about team watching videos. Also, if the team were “really” watching wouldn’t Jenny and Kyle talk about the feedback from the team.

 

[TryingMyBest]

I have no experience with being a YouTuber but I wonder if maybe after getting all the comments with concern and love and prayers, etc do at least some of the YouTubers feel a responsibility to keep vlogging and letting their viewers know how they are doing?

Obviously lots of it is financially motivated but even Joe Plater vlogged to the very end of his life and it was sad and horrifying to me.

 

[riley123]

This situation bothered me. I haven't watched all of Jenny's old videos so I don't know her dogs but recently (my page says 2 mos ago) she posted a video that included them going for a neighborhood walk. (Title: Weird cancer stuff....) She showed herself with their 19 yr old dog Shiloh in a carrier because Shiloh became blind and was afraid to walk by himself so she was carrying him. She also showed him going to the bathroom in the grass. The very next video a few days later was all about them putting Shiloh to sleep.

I think I reacted to that negatively because we had just put our 11 yr old lab to sleep due to cancer. Why pretend that Shiloh is ok in the walking video and then post a sad goodbye video a couple days later. I understand that not many dogs live to be 19 but I just found it strange that she didn't say anything about him at the end of his life during the walk. Again, I probably had a more emotional reaction since our dog just died.

 

[TryingMyBest]

This situation bothered me. I haven't watched all of Jenny's old videos so I don't know her dogs but recently (my page says 2 mos ago) she posted a video that included them going for a neighborhood walk. (Title: Weird cancer stuff....) She showed herself with their 19 yr old dog Shiloh in a carrier because Shiloh became blind and was afraid to walk by himself so she was carrying him. She also showed him going to the bathroom in the grass. The very next video a few days later was all about them putting Shiloh to sleep.

I think I reacted to that negatively because we had just put our 11 yr old lab to sleep due to cancer. Why pretend that Shiloh is ok in the walking video and then post a sad goodbye video a couple days later. I understand that not many dogs live to be 19 but I just found it strange that she didn't say anything about him at the end of his life during the walk. Again, I probably had a more emotional reaction since our dog just died.

Sorry to hear about your sweet doggie. I've had 4 cross the bridge in the last 4 years and it never gets easier.

Jenny is too absorbed in herself to pay much attention to her animals. At 19 years old there's a lot going wrong that I'm sure she couldn't cope with since she's in such a horrible place herself.

 

[Miriam3]

Do you think there is a chance some of the weakness is from over medication and not having rehab after her hospital stay? We don’t see everything that is going on, but very surprised Kyle and Jenny are not screaming at anyone to build up Jenny’s strength.

I don’t think her strength is going to get better and that’s why no one is ordering physical therapy. Her prognosis is poor and she likely is going to be declining from here. If J & K are reading bad news here before they’re hearing it anyplace else (or accepting it) that represents a much bigger problem than anything on this website. I’ve seen lung cancer patients in hospital who are in terrible shape whose oncologists are still telling them they are going to start a new clinical trial targeted to their mutation and a hospitalist or even a resident has to say “That’s not going to happen.” Patients are often grateful to have someone tell them the truth. If anyone isn’t telling Jenny of her prognosis or even that she’s declining, it’s probably because they get shut down or they’re just afraid to given her level of anxiety.

Her pain level is compounded by anxiety and fear. In one video (title mentions shingles, pleural effusion) she says she’s on two different anxiety medications and that was 11 months ago. This is the first video which mentioned pleural effusion in the title but I didn’t rewatch the whole video. Not sure if this was first diagnosis of malignant pleural effusion but here’s an article stating from first diagnosis of MPE prognosis is 3 - 12 months. I know the pulmonologist told her not to pay attention to old data but this data is from February 2023. I’m unaware of any new treatments for this since February of this year. The relevant part of the article is the first paragraph under Epidemiology.

Malignant Pleural Effusion - StatPearls - NCBI Bookshelf

 

[mayday mayday]

My sister just told me about her son's friend's 70 year old grandmother, who was in perfect health until she recently had shortness of breath and went to the hospital. She was diagnosed with a malignant pleural effusion and a Pleurx was placed before she was discharged. A home health nurse came by to show her how to drain the effusion. I wonder why Jenny had to suffer so long before her Pleurx was placed. As for the 70 year old patient the docs have been unable to determine her primary site of cancer. She is having a PET scan sometime this week which will read stat so that her oncologist has the results for her appt later that day. But back to my question, I wonder why Jenny's Pleurx was not placed earlier, I wonder if that would have prevented the months of pain she endured as well as prevent the current loculation.

 

[Puffy Pox]

I don’t think her strength is going to get better and that’s why no one is ordering physical therapy. Her prognosis is poor and she likely is going to be declining from here. If J & K are reading bad news here before they’re hearing it anyplace else (or accepting it) that represents a much bigger problem than anything on this website. I’ve seen lung cancer patients in hospital who are in terrible shape whose oncologists are still telling them they are going to start a new clinical trial targeted to their mutation and a hospitalist or even a resident has to say “That’s not going to happen.” Patients are often grateful to have someone tell them the truth. If anyone isn’t telling Jenny of her prognosis or even that she’s declining, it’s probably because they get shut down or they’re just afraid to given her level of anxiety.

Her pain level is compounded by anxiety and fear. In one video (title mentions shingles, pleural effusion) she says she’s on two different anxiety medications and that was 11 months ago. This is the first video which mentioned pleural effusion in the title but I didn’t rewatch the whole video. Not sure if this was first diagnosis of malignant pleural effusion but here’s an article stating from first diagnosis of MPE prognosis is 3 - 12 months. I know the pulmonologist told her not to pay attention to old data but this data is from February 2023. I’m unaware of any new treatments for this since February of this year. The relevant part of the article is the first paragraph under Epidemiology.

Malignant Pleural Effusion - StatPearls - NCBI Bookshelf

Her activity tolerance is too poor for PT. Doctors order PT for advanced cancers regardless of prognosis but in Jenny's case her pulmonary status won't allow for it. She may be walking a bit in the house but appears to be wheelchair bound when not at home.
---

My sister just told me about her son's friend's 70 year old grandmother, who was in perfect health until she recently had shortness of breath and went to the hospital. She was diagnosed with a malignant pleural effusion and a Pleurx was placed before she was discharged. A home health nurse came by to show her how to drain the effusion. I wonder why Jenny had to suffer so long before her Pleurx was placed. As for the 70 year old patient the docs have been unable to determine her primary site of cancer. She is having a PET scan sometime this week which will read stat so that her oncologist has the results for her appt later that day. But back to my question, I wonder why Jenny's Pleurx was not placed earlier, I wonder if that would have prevented the months of pain she endured as well as prevent the current loculation.

Pleurx catheters come with risks (ie infections) so will only be placed when the effusion "fills back up" too quickly for outpatient thoracentesis.

 

[Miriam3]

I’m still wondering about her last hospitalization and whether or not it was caused by amivantamab or whether the amivantamab was stopped because of her worsening condition due to progression.

I remember that they were already planning the PleurX cath placement and that her fluid was increasing before that drug. Maybe it just increased enough due to progression and it coincided with the latest treatment. She had no recurrence of the mouth sores after the second infusion. Not sure if that’s relevant but it seems as if she were having a worse reaction the skin issues would have come back as well.

I find it hard to believe that her current condition is due to that drug, even in part. It may have a long half-life but I think it was stopped because of her condition.

Oddly enough, **one of the disqualifications of her possible upcoming trial is having been treated with amivantamab. Not sure if that means long-term treatment or what. Her doctors must think that it’s not an issue for her, maybe because she only had two infusions. Or maybe it just needs to be completely out of her system.

Edited to add: **I reread the exclusion criteria and this only applies to module A and module B groups. She may be in the module C group.

 

[Doherty557]

When does it stop being informative/interesting & start becoming exploitative?

Unfortunately I think we have reached that point

I always followed Jenny due to having the same disease and I found her informative to watch and I learnt a lot from her. In the US the treatment plan has been quite different to what I have in the UK.

However, I have not been able to watch since the video of her attending Winnie’s dance recital. I found it clearl she’s going down hill and it’s now at a point her videos are triggering rather than comforting.

I always thought Jenny would be okay for a few more years, this decline has been quick and that’s what has always scared me so much about this disease. One day you feel fine and the next you are getting the news that you have months to live

I probably shouldn’t even be reading things on this thread but I like checking in to see if she’s okay. I do think it’s time they said they want to live out the next few months privately.

That being said, if Jenny enjoys her YouTube and making videos, it seems harsh to take that away from her. I think it makes her feel useful and needed at a time she really should just be resting. Its not a good situation either way you look at it

 

[Marchonegypt]

So sorry that you go through the quarterly scan anxiety
Do you think CoH will search all US trial databases?
My experience of the UK is not all oncologists search all databases. I mentioned a trial for my husband to an oncologist and he shrugged his shoulders and said he had no knowledge of it, but would refer us to the trust carrying out the trial if we wanted that. Suffice to say we quickly moved hospitals.
It amazes me that any of Jennys team watch her videos. I don't disbelieve it, but do find it odd that any of them would watch their patients videos in their private time!

I think that's the last thing they'd do in their spare time

So sorry that you go through the quarterly scan anxiety
Do you think CoH will search all US trial databases?
My experience of the UK is not all oncologists search all databases. I mentioned a trial for my husband to an oncologist and he shrugged his shoulders and said he had no knowledge of it, but would refer us to the trust carrying out the trial if we wanted that. Suffice to say we quickly moved hospitals.
It amazes me that any of Jennys team watch her videos. I don't disbelieve it, but do find it odd that any of them would watch their patients videos in their private time!

 

[Turaj]

I’m still wondering about her last hospitalization and whether or not it was caused by amivantamab or whether the amivantamab was stopped because of her worsening condition due to progression.

I remember that they were already planning the PleurX cath placement and that her fluid was increasing before that drug. Maybe it just increased enough due to progression and it coincided with the latest treatment. She had no recurrence of the mouth sores after the second infusion. Not sure if that’s relevant but it seems as if she were having a worse reaction the skin issues would have come back as well.

I find it hard to believe that her current condition is due to that drug, even in part. It may have a long half-life but I think it was stopped because of her condition.

Oddly enough, **one of the disqualifications of her possible upcoming trial is having been treated with amivantamab. Not sure if that means long-term treatment or what. Her doctors must think that it’s not an issue for her, maybe because she only had two infusions. Or maybe it just needs to be completely out of her system.

Edited to add: **I reread the exclusion criteria and this only applies to module A and module B groups. She may be in the module C group.

Very difficult to know if that reaction was really 100% reaction to the trial or progression.From what we see in the videos I would think mostly progression. I think they could very well not find her a good candidate for the new trial...I hope I am wrong.

 

[Marchonegypt]

Very difficult to know if that reaction was really 100% reaction to the trial or progression.From what we see in the videos I would think mostly progression. I think they could very well not find her a good candidate for the new trial...I hope I am wrong.

We won't know about the state of progression until they stop sitting on the scan results!

 

[ScrattyRatty]

We won't know about the state of progression until they stop sitting on the scan results!

They are not sitting on scan results, as was shown by my timeline of the videos. I assume you have blocked me and haven't seen my posts - would someone else please be so kind as to quote my comment of yesterday regarding the dates so we can stop this particular bit of nonsense.
For everyone else - the scans were Thursday last week.

 

[Turaj]

They are not sitting on scan results, as was shown by my timeline of the videos. I assume you have blocked me and haven't seen my posts - would someone else please be so kind as to quote my comment of yesterday regarding the dates so we can stop this particular bit of nonsense.
For everyone else - the scans were Thursday last week.

Even YT vloggers may not rush to post scan results if not good.I would think they would need time to process them. We will learn the results this week.

 

[ScrattyRatty]

Even YT vloggers may not rush to post scan results if not good.I would think they would need time to process them. We will learn the results this week.

Seriously, calling Jenny and Kyle pretty vile things for something they have not done stinks. There has been no delay, the delay is in the heads of a few people who seem to want to find something, anything, to cast aspersions about the channel. I'm beginning to think there is some ulterior motive.