Sarah & Josh (POG family)

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Sarah has been off treatment meds since April 27th. It's too bad they didn't just go straight to this new treatment instead of messing with the clinical trial. Even if she had gotten into one it wasn't the one they wanted. It seems like that was just an expensive useless ordeal.

I hope she has at least a little more time with her family with this new plan and that it isn't too debilitating.
 
I came here from the Jenny Apple thread b/c a few of people had mentioned this channel. I don't follow this family but watched this last video. Sarah seems remarkably articulate at the moment and looks better than Jenny.
Is there a reason why she can't stay on steroids? I understand that isn't a long-term solution but it sounds like her time left is sadly quite short.
 
lucyricardo said:
I came here from the Jenny Apple thread b/c a few of people had mentioned this channel. I don't follow this family but watched this last video. Sarah seems remarkably articulate at the moment and looks better than Jenny.
Is there a reason why she can't stay on steroids? I understand that isn't a long-term solution but it sounds like her time left is sadly quite short.
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Because she needs to be off steroids to have the immunotherapy, which is the way they have decided to go. It is risky for her, it's true.
 
oldandgrey said:
Sarah is to be given a double dose of immunotherapy that she has had previously, without which her life expectancy is a few weeks. With the immunotherapy she may get a few months, but may also have side effects from the treatment. The situation is dire for her. I hope they can keep her comfortable for whatever time she has left.
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It's not an easy choice.
 
The double immunotherapy is actually the immunotherapy that hospitalized my husband after just 2 doses. It causes pneumonitis (severe lung inflammation) which landed him in HDU, and then it attacked his colon and left him with colitis :( He required high-dose steroids for 12 months following his hospital stay.
The dual immunotherapy is called ipilimumab and nivolumab. Although melanoma and kidney cancer are complete different cancers, they are treated with the same treatments. Sarah has had solo nivolumab but ipilimumab will be new to Sarah.
These 2 treatments are known as Opdivo & Yervoy in the USA.
Steroids are nick named "the devils smarties" for a reason. They mask nasty symptoms and are extremely difficult to taper off. I hope Sarah manages but I think she is going to fall very unwell when she tries. :(
 
Saydee said:
The double immunotherapy is actually the immunotherapy that hospitalized my husband after just 2 doses. It causes pneumonitis (severe lung inflammation) which landed him in HDU, and then it attacked his colon and left him with colitis :( He required high-dose steroids for 12 months following his hospital stay.
The dual immunotherapy is called ipilimumab and nivolumab. Although melanoma and kidney cancer are complete different cancers, they are treated with the same treatments. Sarah has had solo nivolumab but ipilimumab will be new to Sarah.
These 2 treatments are known as Opdivo & Yervoy in the USA.
Steroids are nick named "the devils smarties" for a reason. They mask nasty symptoms and are extremely difficult to taper off. I hope Sarah manages but I think she is going to fall very unwell when she tries. :(
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We are as ever grateful for your insight.
 
Marchonegypt said:
We are as ever grateful for your insight.
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Hey, no problem. Happy to complete the picture a bit more if I can. Sometimes vloggers put out videos and don't really explain or go into too much detail.
Sarah will appear well due to the steroids which make people look well.
When my grandma died many years ago I was really confused because she looked well. The doctor that came to the house explained the dexamethasone masked what was happening. And like my husband, whenever my grandma tried to wean off them it caused her to stop eating and want to sleep 24/7. In the end they left her on steroids to give her an appetite and give her energy.
 
Saydee said:
Hey, no problem. Happy to complete the picture a bit more if I can. Sometimes vloggers put out videos and don't really explain or go into too much detail.
Sarah will appear well due to the steroids which make people look well.
When my grandma died many years ago I was really confused because she looked well. The doctor that came to the house explained the dexamethasone masked what was happening. And like my husband, whenever my grandma tried to wean off them it caused her to stop eating and want to sleep 24/7. In the end they left her on steroids to give her an appetite and give her energy.
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It does help having someone steering us through a bit although I'm sorry for how you gained the knowledge.
 
The last video seems so odd to me. Interested to hear others’ reactions. As a former hospice nurse, I see some reasons for concern, but what do I know. Living our lives in front of a camera or for a viewing audience, still hard to wrap my mind around for something like this….
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I don’t like it. I don’t like it at all. Asking for questions in the comments plug at the end? Feeling reminiscent of TT. Harder for him than for Sarah? Sarah clearly knows when her cognition is impaired and that is a scary awful feeling no doubt. I get that everyone deals differently, but having first hand observed many families in hospice, this particular way, in front of a camera creating content seems so “off” / inappropriate and seems to indicate a lack of understanding of how dire Sarah’s situation truly is.
 
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Odd is right. I've always found him to be extremely weird. Josh & the family are in denial of what's happening & what's soon to come.

He is deleting comments that suggest hospice. Despite having a dying wife at home he has plenty of time to ask viewers for questions, respond to comments & delete comments from well-meaning viewers that probably have a lot of healthcare experience. But, engagement = more money.

He said this was a "bigger" update. Nothing new was really said - which for Sarah no news is good news.
 
I don't know maybe I'm nuts but I kinda get what he's saying. He thinks since Sarah is spacey and that she isn't at least worrying like he is but just kind of in fog.

They don't get nearly as many views as Jenny Apple and so they aren't making the big bucks. They also don't get the bajillion comments that Jenny gets either. I don't think Jenny or Kyle even read the comments any more or at least they never respond.

I know nothing about melanoma end stage but I can see where the repetitive comments about hospice would start to piss Josh off since it should be a known fact after all this time that she can't go into hospice and actually try this new treatment. The hospice comment folks need to give it a rest.

She wants to try treatment. It's her life and her death. She gets to choose. If and when treatment totally isn't working or the side effects are horrible she will go into hospice care.

Jumping down off my soapbox now.
 
Does anyone think that Josh feels that Sarah will become more coherent for longer periods if she is doing immunotherapy? He states she is lucid 1 to 2 hrs a day. When awake at other times, she seems less coherent. He mentions asking her her birthdate to see if she can answer. It seems unfortunate to ask her questions that she may not be able to answer easily.
 
riley123 said:
Does anyone think that Josh feels that Sarah will become more coherent for longer periods if she is doing immunotherapy? He states she is lucid 1 to 2 hrs a day. When awake at other times, she seems less coherent. He mentions asking her her birthdate to see if she can answer. It seems cruel to ask her questions that she may not be able to answer easily.
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I'm sure he hopes she will get more coherent. He has to hope the treatment makes her quality of life at least a little bit better.

I don't know if it's cruel to ask her that question. I guess sent question could be considered cruel but I imagine he needs it wants to know her mental status and just saying are you okay isn't sufficient.

It's all just so horribly sad.
 
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