Jenny Apple #2

[TryingMyBest]

@Make sense of it!
Hubby is doing fine. He had one stent put in his heart. Sadly he's had stents put in both legs twice and they have failed so next week he finds out if he has to have bypass grafts in both legs.

Public Service Announcement!
DON'T SMOKE

Back to Jenny..... I laughed at how many times there were corrections on the screen in Kyle's video. It seemed just like whenJenny always corrects him in her videos. And obviously someone told him to start thanking people for donating. Maybe that cousin.

@Saydee
Since Jenny is also having radiation to her spine won't her side effects be even worse? Much larger field of radiation.

Her pain seems to be from her lungs so that won't be changing any time soon. So sad.

So she had the fitting 2 weeks ago on Thursday and then came back last Thursday and started the treatment?

I'm still horrified for her poor kids.
---

As much as Kyle refuses to acknowledge it, I'm afraid Jenny will soon be deemed "hospice-appropriate". The disease burden in her lungs is not being affected by the current radiation and now that she is suffering extreme fatigue (and not eating much) she will not be able to tolerate any more of those targeted therapies or immunotherapy. The hospice nurse would monitor Jenny's pain and anxiety levels ... Jenny's pain should be MINIMAL at this point in time !! Her sister the nurse should know this!! I really wonder the real reason that a palliative care/hospice team is not in place yet. My ex mother-in-law was still in relatively good functional status (still walking and eating) when her home health care nurse was transitioned to a hospice nurse.

I think we have to remember Jenny most likely has a very low pain threshold based on what we've previously seen. It's hard to medicate someone like that without putting them totally out. My mom was like that and her pain docs always said if she has no pain she will be so medicated she might not wake up. That's actually what finally did happen.

If she does get hospice care maybe they can get some counseling for those sweet scared little kids.

 

[Marchonegypt]

As much as Kyle refuses to acknowledge it, I'm afraid Jenny will soon be deemed "hospice-appropriate". The disease burden in her lungs is not being affected by the current radiation and now that she is suffering extreme fatigue (and not eating much) she will not be able to tolerate any more of those targeted therapies or immunotherapy. The hospice nurse would monitor Jenny's pain and anxiety levels ... Jenny's pain should be MINIMAL at this point in time !! Her sister the nurse should know this!! I really wonder the real reason that a palliative care/hospice team is not in place yet. My ex mother-in-law was still in relatively good functional status (still walking and eating) when her home health care nurse was transitioned to a hospice nurse.

I think Kyle is still hoping for a miracle and that this is all going to go away!

 

[TryingMyBest]

I think Kyle is still hoping for a miracle and that this is all going to go away!

I know it's just wishful thinking but it's giving him hope. That's really all he has at this point.

 

[Saydee]

@Make sense of it!
Hubby is doing fine. He had one stent put in his heart. Sadly he's had stents put in both legs twice and they have failed so next week he finds out if he has to have bypass grafts in both legs.

Public Service Announcement!
DON'T SMOKE

Back to Jenny..... I laughed at how many times there were corrections on the screen in Kyle's video. It seemed just like whenJenny always corrects him in her videos. And obviously someone told him to start thanking people for donating. Maybe that cousin.

@Saydee
Since Jenny is also having radiation to her spine won't her side effects be even worse? Much larger field of radiation.

Her pain seems to be from her lungs so that won't be changing any time soon. So sad.

So she had the fitting 2 weeks ago on Thursday and then came back last Thursday and started the treatment?

I'm still horrified for her poor kids.
---

I think we have to remember Jenny most likely has a very low pain threshold based on what we've previously seen. It's hard to medicate someone like that without putting them totally out. My mom was like that and her pain docs always said if she has no pain she will be so medicated she might not wake up. That's actually what finally did happen.

If she does get hospice care maybe they can get some counseling for those sweet scared little kids.

Really happy to hear your hubbie is fine!

I imagine radiation is really going to take its toll on Jenny and I don't expect that we will see her 'well' anymore. The admin owner of the group where I help out headed to London for Proton Beam Therapy, she is a tough lady but it really did knock her for six. She too had PB to avoid standard to the whole brain whole brain radiation. The radiation itself worked very well on disease, but Jennys got much more disease. My friend also suffered hearing loss after a few days which has never returned.
I really can't imagine Jenny qualifying for further trials or treatments for the lungs, but I do hope that she can perhaps turn a corner and try further treatment. The tablet form of chemo won't knock back that fluid in her lungs, but immunotherapy could! I know that she had a terrible adverse reaction to immunotherapy the first time round, but at this point? Well if I wanted a shot, I'd be begging and pleaing to try immunotherapy at a lower dose, or a different form of immunotherapy.
Kyle said he is having to help her now? Its really not a good sign.
The problem with Jenny is that both her and Kyle have tended to over report everything! Here is a perfect example of that. Both Kyle and Jenny recognised the nurse was pulling disappointed faces

 

[TryingMyBest]

Really happy to hear your hubbie is fine!

I imagine radiation is really going to take its toll on Jenny and I don't expect that we will see her 'well' anymore. The admin owner of the group where I help out headed to London for Proton Beam Therapy, she is a tough lady but it really did knock her for six. She too had PB to avoid standard to the whole brain whole brain radiation. The radiation itself worked very well on disease, but Jennys got much more disease. My friend also suffered hearing loss after a few days which has never returned.
I really can't imagine Jenny qualifying for further trials or treatments for the lungs, but I do hope that she can perhaps turn a corner and try further treatment. The tablet form of chemo won't knock back that fluid in her lungs, but immunotherapy could! I know that she had a terrible adverse reaction to immunotherapy the first time round, but at this point? Well if I wanted a shot, I'd be begging and pleaing to try immunotherapy at a lower dose, or a different form of immunotherapy.
Kyle said he is having to help her now? Its really not a good sign.
The problem with Jenny is that both her and Kyle have tended to over report everything! Here is a perfect example of that. Both Kyle and Jenny recognised the nurse was pulling disappointed faces

When I read the clinical trial findings about the proton therapy for LM one of the side effects was that 90% developed lymphopenia. I wonder if that might preclude any further immunotherapy. I would think it might keep her out of a clinical trial but then her performance score would keep her out anyway.

 

[Marchonegypt]

I know it's just wishful thinking but it's giving him hope. That's really all he has at this point.

It may make him make the wrong decisions for Jenny.

 

[Dollenganger]

Why are there trolls on YouTube saying that Kyle is cheating and he’ll be married to someone else within a year? If people are making stuff up because they think it’s funny to troll someone with cancer then that’s just sick.

Tbh, I also feel that when someone remarries quickly after losing their husband or wife, they should not be condemned for that either. It does NOT mean that they didn’t love that person. They are trying to find a reason to carry on living now they have lost that Person. They want to know that they, themselves are still alive.

 

[Daisychain4]

As much as Kyle refuses to acknowledge it, I'm afraid Jenny will soon be deemed "hospice-appropriate". The disease burden in her lungs is not being affected by the current radiation and now that she is suffering extreme fatigue (and not eating much) she will not be able to tolerate any more of those targeted therapies or immunotherapy. The hospice nurse would monitor Jenny's pain and anxiety levels ... Jenny's pain should be MINIMAL at this point in time !! Her sister the nurse should know this!! I really wonder the real reason that a palliative care/hospice team is not in place yet. My ex mother-in-law was still in relatively good functional status (still walking and eating) when her home health care nurse was transitioned to a hospice nurse.

Absolutely agree. Even Saydee has lamented the same thoughts quite some time ago regards the palliative/pain team and how effective they are when utilized in the correct and appropriate manner. I’m not sure why Jenny is so different or even perhaps resistive to full on pain/palliative interventions given her life could be assisted greatly in a very positive way.
I too believe a hospice admission is close.
The dialogue above of the children’s interaction regards mummy dying is heart breaking. Those children will carry such traumatic scars if professional help is not forthcoming. Please Kyle, if you’re reading here, please please seek some paediatric counseling for them

 

[mcl92]

Really happy to hear your hubbie is fine!

I imagine radiation is really going to take its toll on Jenny and I don't expect that we will see her 'well' anymore. The admin owner of the group where I help out headed to London for Proton Beam Therapy, she is a tough lady but it really did knock her for six. She too had PB to avoid standard to the whole brain whole brain radiation. The radiation itself worked very well on disease, but Jennys got much more disease. My friend also suffered hearing loss after a few days which has never returned.
I really can't imagine Jenny qualifying for further trials or treatments for the lungs, but I do hope that she can perhaps turn a corner and try further treatment. The tablet form of chemo won't knock back that fluid in her lungs, but immunotherapy could! I know that she had a terrible adverse reaction to immunotherapy the first time round, but at this point? Well if I wanted a shot, I'd be begging and pleaing to try immunotherapy at a lower dose, or a different form of immunotherapy.
Kyle said he is having to help her now? Its really not a good sign.
The problem with Jenny is that both her and Kyle have tended to over report everything! Here is a perfect example of that. Both Kyle and Jenny recognised the nurse was pulling disappointed faces

I hope they tell the doctors she is not eating so she can get IV nutrition etc. I fear she won’t be able to tolerate the full 10 days of radiation.

 

[Dollenganger]

Jenny’s videos were recommended to me on YT (I think) because I watched SJ Strum’s videos about her sister Naomi, who passed away from cancer recently.

She wanted to emphasise that she and her family had been scared of the word hospice. But she said that in the end it was an amazing place to go when you’re so unwell. And she said ‘if you get offered hospice, go - run’. This stayed with me. Her point was that hospices should not be seen as a place you go and die. But mainly somewhere that will help you live your best life if you’re very poorly. And really give someone with cancer what they most need.

 

[TryingMyBest]

I hope they tell the doctors she is not eating so she can get IV nutrition etc. I fear she won’t be able to tolerate the full 10 days of radiation.

When I read the clinical trial reports 95% had fatigue but none was debilitating like Jenny's. I think between her usual treatment issues, large doses of pain medicine, anti anxiety meds and the fatigue from the proton therapy this is just a recipe for disaster.

 

[PW212]

Pretty sure they have a palliative care team overseeing her pain regime. Its heartbreaking that such a young couple want to try and extend her life for even a few more days to be with the kids. The kids are likely traumatized watching this and kyle said himself that she is sleeping 99% of the time. Its going to be soon, if not already, that her sister the nurse is going to have a heart breaking chat with Kyle. Its time to focus on her comfort and care. For her sake and for the kids. The love and time together will never end. In their hearts. They have to lovingly let her go. Tell her its ok to go to sleep and rest. That they will always love and keep her with them. Its a talk that many nurses have to have with some families at the right time. I believe that time is near. I have had to have it with many family members. It is never easy and you are trying to relieve them of their burden and say its ok. You
did all that you could for her and your family. .

 

[TryingMyBest]

Pretty sure they have a palliative care team overseeing her pain regime. Its heartbreaking that such a young couple want to try and extend her life for even a few more days to be with the kids. The kids are likely traumatized watching this and kyle said himself that she is sleeping 99% of the time. Its going to be soon, if not already, that her sister the nurse is going to have a heart breaking chat with Kyle. Its time to focus on her comfort and care. For her sake and for the kids. The love and time together will never end. In their hearts. They have to lovingly let her go. Tell her its ok to go to sleep and rest. That they will always love and keep her with them. Its a talk that many nurses have to have with some families at the right time. I believe that time is near. I have had to have it with many family members. It is never easy and you are trying to relieve them of their burden and say its ok. You
did all that you could for her and your family. .

Jenny said she didn't want to prolong her life if she was basically no longer there. I still wonder if they investigated Oregon's end of life options while they were there. I know she wants every minute she has to be with her kids but unless she gets significantly better soon this isn't the kind of quality time she wanted with her children.

 

[PuzzlesAndWine]

I've been wondering about this therapy in another city. It's 2 weeks away from her kids? Is that correct? At least that's what I got since they were talking about staying there and her kids were with family and they would have to try and figure out the start of school etc. And if it doesn't buy her more time, that's around 2 weeks that she missed with them, I was just surprised they went for this. Were they told that it could extend her life for any significant time? It sucks all around, you want every second with them but to do that you have to get sicker and be away from them.

 

[skyeblue50]

On gmtv this morning around 8am Dr HIlary was talking about cancer therapies and name checked City of Hope because of their research !

 

[TryingMyBest]

I've been wondering about this therapy in another city. It's 2 weeks away from her kids? Is that correct? At least that's what I got since they were talking about staying there and her kids were with family and they would have to try and figure out the start of school etc. And if it doesn't buy her more time, that's around 2 weeks that she missed with them, I was just surprised they went for this. Were they told that it could extend her life for any significant time? It sucks all around, you want every second with them but to do that you have to get sicker and be away from them.

Kyle said in his update today that the kids and her sister are in San Diego with them. He said the kids are confused because it isn't like a regular vacation.

So basically they hauled those kids down to SD to watch their mother be in pain and sleep all day.

It is supposed to extend her life from the LMD (brain) for 6 mos to 9 mos. LMD often kills in just a few weeks. It won't extend her life from the lung cancer/ pleural effusions.

 

[c.sabatier]

I've been wondering about this therapy in another city. It's 2 weeks away from her kids? Is that correct?....

The children have gone along with them to San Diego. Jenny's sister and/or someone else in the family is there as well to help. It seemed as though they are staying in a hotel, since Kyle had mentioned Jenny joining them for a meal in the downstairs area or hotel lobby. It must be difficult for the children to see Jenny sleeping '90%' of the time, as per Kyle.

 

[Turaj]

Kyle said in his update today that the kids and her sister are in San Diego with them. He said the kids are confused because it isn't like a regular vacation.

So basically they hauled those kids down to SD to watch their mother be in pain and sleep all day.

It is supposed to extend her life from the LMD (brain) for 6 mos to 9 mos. LMD often kills in just a few weeks. It won't extend her life from the lung cancer/ pleural effusions.

yes kids are there watching this first hand...not in familiar surroundings but in hotel. She is sleeping most of the time. I thought this sounded like an okay idea if side effects were minimal...this fatigue sounds horrific and then there will be the loss of hair per earlier video. Again kids watching all of this. I question the idea as I heard his video today.....meantime the primary lung cancer is progressing and what is the real gain here?

 

[TryingMyBest]

yes kids are there watching this first hand...not in familiar surroundings but in hotel. She is sleeping most of the time. I thought this sounded like an okay idea if side effects were minimal...this fatigue sounds horrific and then there will be the loss of hair per earlier video. Again kids watching all of this. I question the idea as I heard his video today.....meantime the primary lung cancer is progressing and what is the real gain here?

I guess she won't have the horrible effects from the LMD like Sarah had but still she isn't going to get well.

 

[Marchonegypt]

The children have gone along with them to San Diego. Jenny's sister and/or someone else in the family is there as well to help. It seemed as though they are staying in a hotel, since Kyle had mentioned Jenny joining them for a meal in the downstairs area or hotel lobby. It must be difficult for the children to see Jenny sleeping '90%' of the time, as per Kyle.

Although Kyke said he cooked her spaghetti. Can you do that in US hotels?