1. < Cancer

Mom-Advanced Cancer - Phrenic Nerve Damage

Posted by mattchi @mattchi, Sep 27, 2022

Quite the story here....any thoughts/comments are welcome.

79 y/o Mom with Emphysema was diagnosed with gastric cancer that metastasized to around her lungs and lymph nodes around the lungs.

7 days ago - started 1st session of chemo - oxaliplatin plus infusional fluorouracil - no issues or side effects.
5 days ago - woke up in the early morning (3:45 AM) with severe chest pain and admitted to the ER. She was given some pretty strong pain meds to alleviate pain
4 days ago - chest pain went away (not sure if from pain meds or just relieved) - but then she started to have some difficulty breathing, continued to be difficult to breath and kept getting worse.
3 days ago - ended up almost code blue - O2 level dropped to 60s and she was intubated and put on a ventilator
Yesterday - doctors told us that she has a paralyzed diaphragm from a tumor damaging her phrenic nerve. She is still intubated on the ventilator. Not sure if she can breath on her own or not. Or ever will...

Why could she walk to a football game 10 days ago but now she can’t get off the ventilator? Why can someone often tolerate having a paralyzed diaphragm but she can’t? Due to her Emphysema on top of possible bronchial compression?

Any comments and help is appreciated.

Interested in more discussions like this? Go to the Cancer Support Group.

Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Sep 27, 2022

Hello @mattchi and welcome to Mayo Connect. I am so sorry to hear of your mom's health problems, but I do appreciate your reaching out and seeking information to help her. Having an advocate looking out for you is so important to anyone who is ill, and you are doing a good job at seeking the best for your mom.

It sounds as if your mom has a combination of lung issues, and the paralyzed diaphragm is just one of the issues. Is that your understanding as well?

On Connect, there are several discussion groups regarding a paralyzed diaphragm, here are the links. As you will see, the last link deals specifically with Phrenic Nerve Danage,
– Paralyzed Diaphragm https://connect.mayoclinic.org/discussion/paralyzed-diaphragm/
– No cause found for recurring right hemidiaphragm paralysis https://connect.mayoclinic.org/discussion/no-cause-found-for-recurring-right-hemidiaphragm-paralysis/
– Phrenic Nerve damage https://connect.mayoclinic.org/discussion/phoenix-nerve-damage/

Please know that it is always your right to seek a second opinion for your mom. A virtual appointment might be wise since she could not physically attend another appointment right now. Have you considered this possibility?

What suggestions are the doctors making regarding the possibility of her condition improving? Is she aware and able to make her own decisions at this point?

REPLY
1 reply
mattchi | @mattchi | Sep 27, 2022
In reply to @hopeful33250 "Hello @mattchi and welcome to Mayo Connect. I am so sorry to hear of your mom's..." + (show)
@hopeful33250

Hello @mattchi and welcome to Mayo Connect. I am so sorry to hear of your mom's health problems, but I do appreciate your reaching out and seeking information to help her. Having an advocate looking out for you is so important to anyone who is ill, and you are doing a good job at seeking the best for your mom.

It sounds as if your mom has a combination of lung issues, and the paralyzed diaphragm is just one of the issues. Is that your understanding as well?

On Connect, there are several discussion groups regarding a paralyzed diaphragm, here are the links. As you will see, the last link deals specifically with Phrenic Nerve Danage,
– Paralyzed Diaphragm https://connect.mayoclinic.org/discussion/paralyzed-diaphragm/
– No cause found for recurring right hemidiaphragm paralysis https://connect.mayoclinic.org/discussion/no-cause-found-for-recurring-right-hemidiaphragm-paralysis/
– Phrenic Nerve damage https://connect.mayoclinic.org/discussion/phoenix-nerve-damage/

Please know that it is always your right to seek a second opinion for your mom. A virtual appointment might be wise since she could not physically attend another appointment right now. Have you considered this possibility?

What suggestions are the doctors making regarding the possibility of her condition improving? Is she aware and able to make her own decisions at this point?

Jump to this post

Hello Teresa.

Thank you for your quick response. Much appreciated. Right now. Unfortunately. It feels like the doctors are stating that the paralyzed diaphragm is the main (and only) reason for her difficulty breathing and being on the ventilator. We are hoping and thinking that there could be other contributing factors involved. We are hoping to explore other options and ideas such as:

1. Could the compression of the phrenic nerve be more an inflammatory response related to the recent chemo treatment?  

2. Any chance this could settle down more quickly than we would expect given the onset appeared so sudden?   

3. Is there any value for the role of IV steroids if any of this is related to inflammation?  

4. Any chance she has had a paralyzed diaphragm for a while and we were unaware?

5. Possibility of diaphragm pacing system.

We have yet to see a pulmonologist yet.

The only real thing they have told us thus far is that we can attempt to give her more chemo/immunotherapy/gene therapy to attempt to shrink the tumor to relieve the pressure on the phrenic nerve. But they feel this would most likely require a trach and external ventilator for breathing support.

My mom is on some sedation medicine right now. So she is somewhat aware and responsive. And can give yes and no answers. But we know as her children, she does not want machines keeping her alive. It is difficult.

Thank you again for any support. We are hoping to talk more with the doctors and gather more information to help make the best decisions moving forward.

REPLY
3 replies
logandenita | @logandenita | Sep 27, 2022
In reply to @mattchi "Hello Teresa. Thank you for your quick response. Much appreciated. Right now. Unfortunately. It feels like..." + (show)
@mattchi

Hello Teresa.

Thank you for your quick response. Much appreciated. Right now. Unfortunately. It feels like the doctors are stating that the paralyzed diaphragm is the main (and only) reason for her difficulty breathing and being on the ventilator. We are hoping and thinking that there could be other contributing factors involved. We are hoping to explore other options and ideas such as:

1. Could the compression of the phrenic nerve be more an inflammatory response related to the recent chemo treatment?  

2. Any chance this could settle down more quickly than we would expect given the onset appeared so sudden?   

3. Is there any value for the role of IV steroids if any of this is related to inflammation?  

4. Any chance she has had a paralyzed diaphragm for a while and we were unaware?

5. Possibility of diaphragm pacing system.

We have yet to see a pulmonologist yet.

The only real thing they have told us thus far is that we can attempt to give her more chemo/immunotherapy/gene therapy to attempt to shrink the tumor to relieve the pressure on the phrenic nerve. But they feel this would most likely require a trach and external ventilator for breathing support.

My mom is on some sedation medicine right now. So she is somewhat aware and responsive. And can give yes and no answers. But we know as her children, she does not want machines keeping her alive. It is difficult.

Thank you again for any support. We are hoping to talk more with the doctors and gather more information to help make the best decisions moving forward.

Jump to this post

This is a most difficult time for which, in my experience, there is no escape.
I hope everyone is able to be present and express their goodbyes.
I am in Texas and here most hospitals have a social worker on staff to guide families at this time and to help explain options and resources.
Holding your family in my heart.
Your friend in Texas

REPLY
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Sep 27, 2022
In reply to @mattchi "Hello Teresa. Thank you for your quick response. Much appreciated. Right now. Unfortunately. It feels like..." + (show)
@mattchi

Hello Teresa.

Thank you for your quick response. Much appreciated. Right now. Unfortunately. It feels like the doctors are stating that the paralyzed diaphragm is the main (and only) reason for her difficulty breathing and being on the ventilator. We are hoping and thinking that there could be other contributing factors involved. We are hoping to explore other options and ideas such as:

1. Could the compression of the phrenic nerve be more an inflammatory response related to the recent chemo treatment?  

2. Any chance this could settle down more quickly than we would expect given the onset appeared so sudden?   

3. Is there any value for the role of IV steroids if any of this is related to inflammation?  

4. Any chance she has had a paralyzed diaphragm for a while and we were unaware?

5. Possibility of diaphragm pacing system.

We have yet to see a pulmonologist yet.

The only real thing they have told us thus far is that we can attempt to give her more chemo/immunotherapy/gene therapy to attempt to shrink the tumor to relieve the pressure on the phrenic nerve. But they feel this would most likely require a trach and external ventilator for breathing support.

My mom is on some sedation medicine right now. So she is somewhat aware and responsive. And can give yes and no answers. But we know as her children, she does not want machines keeping her alive. It is difficult.

Thank you again for any support. We are hoping to talk more with the doctors and gather more information to help make the best decisions moving forward.

Jump to this post

@matttchi

Yes, it is very difficult. I'm glad that you and your siblings understand her wishes about end-of-life measures. That is a help.

When will you be talking with other specialists, such as a pulmonary doctor, etc.?

REPLY
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Oct 18, 2022
In reply to @mattchi "Hello Teresa. Thank you for your quick response. Much appreciated. Right now. Unfortunately. It feels like..." + (show)
@mattchi

Hello Teresa.

Thank you for your quick response. Much appreciated. Right now. Unfortunately. It feels like the doctors are stating that the paralyzed diaphragm is the main (and only) reason for her difficulty breathing and being on the ventilator. We are hoping and thinking that there could be other contributing factors involved. We are hoping to explore other options and ideas such as:

1. Could the compression of the phrenic nerve be more an inflammatory response related to the recent chemo treatment?  

2. Any chance this could settle down more quickly than we would expect given the onset appeared so sudden?   

3. Is there any value for the role of IV steroids if any of this is related to inflammation?  

4. Any chance she has had a paralyzed diaphragm for a while and we were unaware?

5. Possibility of diaphragm pacing system.

We have yet to see a pulmonologist yet.

The only real thing they have told us thus far is that we can attempt to give her more chemo/immunotherapy/gene therapy to attempt to shrink the tumor to relieve the pressure on the phrenic nerve. But they feel this would most likely require a trach and external ventilator for breathing support.

My mom is on some sedation medicine right now. So she is somewhat aware and responsive. And can give yes and no answers. But we know as her children, she does not want machines keeping her alive. It is difficult.

Thank you again for any support. We are hoping to talk more with the doctors and gather more information to help make the best decisions moving forward.

Jump to this post

Hello @mattchi

It has been a couple of weeks since you last posted about your mom's post-surgery issues. I was thinking about her and your family.

How is she doing? Were you able to get a second opinion?

REPLY
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