Help with understanding late stage lung mets

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Help with understanding late stage lung mets

by Claity on Fri Dec 07, 2018 12:50 AM

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I have pancreatic cancer that has spread to my lungs. This will probably in all likelihood cause my death and I am trying to understand what that will look like. Will I be gasping for air? Will there be pain? Very few pan can people live to get mets in their lungs, so that’s why I’m asking on this thread. I’m pretty sure the end result is probably the same for both diagnosis. Is there anyone out there who has walked someone thru this dying process who can give me a heads up on what the expect the next few months to look like? My oncologist is pretty vague “oh you will feel unwell.” Duh. Many thanks....

RE: Help with understanding late stage lung mets

by PunkyD on Mon Dec 24, 2018 07:02 AM

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Dear Claity,

I'm sorry to hear about your diagnosis but it's amazing that you have beat cancer's butt for 10 years! Unfortunately, I lost my Mom to PC 5 years ago.  She lived with PC for 4+ years (and they said that this was a long time), and felt pretty good most of the time. Her cancer was diagnosed very early, by chance (she was in the hospital for something else), so we were very lucky. She had a distal pancreatectomy and was fine for a while. Then she had a something on her lung (a lesion), and had another surgery to remove it (not sure if it was related to the original cancer). In any case, she was amazingly strong and brave. She simply lost weight, became weaker, and eventually (her last 2 weeks) became bedridden, but she was such a trooper the entire time. The last two weeks hospice helped us and we gave her drugs to keep her comfortable and out of pain, and she passed away peacefully at home. 

Are you having treatments (chemo) now? I wish you many more years of feeling good. 

Punky

RE: Help with understanding late stage lung mets

by ToddlerFather on Tue Dec 25, 2018 07:29 PM

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Because I have lung metastases as well, although from a different primary cancer, I asked my doctors the same question... 

1) They seem to believe that lung metastases are only a path towards brain metastases, and those would indeed be deadly. 

2) A pulmonologist helped me estimate the total volume of metastases, and asked for a pulmonary function test that had calculations of torax expansion during breathing. That led to a critical volume number that, when metastases eventually get larger than that, breathing capacitiy will be smaller. 

But soon after determining that number and making a growth projection based on tumor markers, my metastases stabilized and my tumor markers are either stable or declining... so don't be so sure it will cause your death. As you mentioned, you survived when most didn't, and this can still hold true, although a little extra could help. 

I was trying to do high dosage vitamin D (5000 UI a day) and that didn't help by itself; but when I added LDN (Low-Dose Naltrexone), and went thru the full ramp-up up to 4.5mg a day, things changed. I suggest reading about LDN:

https://www.ldnresearchtrust.org/

http://www.lowdosenaltrexone.org/

And while I recently started alpha-lipoic acid as well, it's too soon to tell whether it helps or not. Just be careful with taking it, as it requires a heavy meal already in your stomach for it not to hurt (after all, it's acid).

RE: Help with understanding late stage lung mets

by Claity on Wed Dec 26, 2018 07:34 PM

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Your mom sounds like someone I would have liked to have known and I’m sorry that you lost her. Thank you so much for sharing your time with me. I’m not on chemo and don’t know if I will go on it. Do you think it made her last days better or was she really ill because of it? I’m wondering if a few more months of life is the worth the trade off of being sick the whole time. I have growing pan can mets in my lungs and they’re not huge - 4-5 cm, two of them, one in each lung. I did have surgery to remove the left tumor but it just grew back and I should still feel ok according to my oncologist but I don’t. Last visit my oncologist suggested I look into hospice care. My goal is to pass just like your mom, at home and peacefully. So it’s very good news to me that it’s a possibility. Thank you for your wishes, but I think my days a fewer and fewer and that doesn’t really bother me a whole lot. We all die and I’ve been dealing with that possibility for so long now that death almost seems like an old friend. I’m just hoping my death is a good one. Thanks for the support.

RE: Help with understanding late stage lung mets

by Claity on Wed Dec 26, 2018 07:41 PM

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Such good news for you that they are shrinking. Thanks for such a detailed reply, those help so much. Is the pulmonary function test just a diagnostic tool or is there some intervention/treatment that it leads to? I did research low dose naltrexone when I was first diagnosed but haven’t thought of it in years. Will your doctor prescribe it or did you have to go elsewhere? I certainly would like to be more comfortable and if that would help, it would be welcomed. Thanks so much.

RE: Help with understanding late stage lung mets

by ToddlerFather on Wed Dec 26, 2018 08:03 PM

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On Dec 26, 2018 7:41 PM Claity wrote:

Such good news for you that they are shrinking. Thanks for such a detailed reply, those help so much. Is the pulmonary function test just a diagnostic tool or is there some intervention/treatment that it leads to? I did research low dose naltrexone when I was first diagnosed but haven’t thought of it in years. Will your doctor prescribe it or did you have to go elsewhere? I certainly would like to be more comfortable and if that would help, it would be welcomed. Thanks so much.

It's mostly diagnostic. It can be used to assess current state of your lung function, and when you do it again, compare to see if something (either metastases or not) is making you breathe less. It can also lead to some treatments like oxygen, hyperbarics or both. 

In my case it was prescribed by my psychiatrist, who happened to know LDN. My oncologist haven't heard of it, but he is now very interested after seeing the results it had on me. 

Note that it might do more than just make you comfortable; if it stops the lung metastases from spreading, it might completely stop this path to death. 

Your cancer can find a new one, of course, but the lungs are a low-hanging fruit due to blood circulation. If you survived this far, chances are you survive much more; most PC patients die much sooner, and for whatever reason, your PC acts more like less aggresive forms of cancer. 

RE: Help with understanding late stage lung mets

by PunkyD on Sun Dec 30, 2018 07:37 AM

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On Dec 26, 2018 7:34 PM Claity wrote:

Your mom sounds like someone I would have liked to have known and I’m sorry that you lost her. Thank you so much for sharing your time with me. I’m not on chemo and don’t know if I will go on it. Do you think it made her last days better or was she really ill because of it? I’m wondering if a few more months of life is the worth the trade off of being sick the whole time. I have growing pan can mets in my lungs and they’re not huge - 4-5 cm, two of them, one in each lung. I did have surgery to remove the left tumor but it just grew back and I should still feel ok according to my oncologist but I don’t. Last visit my oncologist suggested I look into hospice care. My goal is to pass just like your mom, at home and peacefully. So it’s very good news to me that it’s a possibility. Thank you for your wishes, but I think my days a fewer and fewer and that doesn’t really bother me a whole lot. We all die and I’ve been dealing with that possibility for so long now that death almost seems like an old friend. I’m just hoping my death is a good one. Thanks for the support.

Dear Claity,

Sorry to not have answered sooner, but I'm only seeing your reply today. Regarding chemo, and whether or not it helped more or hurt more........it is such a tricky balancing act. I really don't know what to tell you. I'm not really sure which had a harsher effect on my mom, the cancer or the chemo. I think it was a just a continuing gradual weakening and weight loss (cachexia and ascites) that took her. Basically, until the last two weeks, she functioned normally and was able to do things. Yes, we are all dying, just for some people, the subject is more in the foreground. I wish you many days of feeling good. Surround yourself with good people, take one day at a time, and enjoy the small things. Our hospice team was amazing in that they gave support, information, timelines, and pain meds, when you feel that you are ready to bring them on board. 

I'm here if you want to talk.

Punky

RE: Help with understanding late stage lung mets

by Claity on Tue Jan 29, 2019 09:32 PM

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Hi Punky. Thanks for the reply, and you don’t ever have to apologize again - look how long it took me to answer you back. What you have said is very helpful, so hard to balance whether chemo is worth it. From the outside, I don’t think so, but I sure do understand those people who just want a little longer. I am talking with Hospice at the moment and waiting for scans and bloodwork in a month or so. Then we shall see. I appreciate you being here. My Dad used to call me Punky when I was little, so I always smile when I see you’re on a thread. Thanks for helping...all of us. Claire

RE: Help with understanding late stage lung mets

by Claity on Tue Jan 29, 2019 09:34 PM

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Thanks, sorry for the long time in replying. I thank you so much for the info, but truly I am just too tired to try to fight for it, which I would have to do. But i’m Happy it worked to you. Claire

RE: Help with understanding late stage lung mets

by PunkyD on Wed Jan 30, 2019 08:00 AM

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On Jan 29, 2019 9:32 PM Claity wrote:

Hi Punky. Thanks for the reply, and you don’t ever have to apologize again - look how long it took me to answer you back. What you have said is very helpful, so hard to balance whether chemo is worth it. From the outside, I don’t think so, but I sure do understand those people who just want a little longer. I am talking with Hospice at the moment and waiting for scans and bloodwork in a month or so. Then we shall see. I appreciate you being here. My Dad used to call me Punky when I was little, so I always smile when I see you’re on a thread. Thanks for helping...all of us. Claire

How cool!  Another Punky!  I'm glad if I make you smile. Claire, you sound like an amazing person. I will be rooting for you all the way!  

I think that as long as you are feeling decent and the chemo is doing its job, it may be helpful. When the chemo makes you so sick that you can't bounce back, and it bumps you down a notch, then I guess it's not. 

May I ask how old you are? Hang in there, and feel good. 

Punky

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