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NSCLC Lung adenocarcinoma (Stage IV A)


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I forgot to mention he has been undergoing WBRT and is on Day 8 tomorrow out of 10 days.

I have been reading long-term survival stories and get encouraged. But hearing today of no mutations, I thought this may be worse news.

If only I can get him to read some of these posts. Thanks, again!

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Hi @islandgirls, yes, it's a terminal illness but one that can be managed for many of us for some time with today's treatments. Lots of Stage IV folks are surviving and thriving for years. 

I will admit that for me chemo (carboplatin and taxol) and radiation were a huge challenge, but I recovered and for 11 months now have been doing well on a targeted therapy for an EGFR mutation (I am 67 and Stage IIIB), similar to what your boyfriend's doctor is apparently planning for his HER2 mutation. Research and clinical trials are ongoing for HER2 inhibitors, so that mutation is getting lots of attention. 

My friend's husband decided not to treat his lung cancer, but that was several years ago, before the new therapies were developed. My friend is amazed at how I'm doing today. I'm very grateful to have the options available to us these days.

Whether or not to have treatment is a personal choice, but hopefully your boyfriend will make his decision based on today's information and not Dr. Google. 

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Great news! One way to reduce the chances of getting discouraged by side effects, etc., is to connect with a palliative care specialist. Palliative care is NOT hospice--anyone being treated for cancer, at any point, any stage, can get medical help to deal with the effects of treatment. Palliative care can help improve the quality of life while you're being treated with therapies that can cause unpleasant side effects. 

Hopefully, though, he will do well with the triplet and have minimal/tolerable side effects. 

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@islandgirls, my biggest regret is that I didn't know to engage palliative care at the beginning. I eventually had a great team. Like LexieCat says, they have lots of tricks up their sleeves to manage pain and other unpleasant side effects, and they really listen to their patient. It is not hospice care. You may also want to consider integrative medicine (which may include acupuncture), but they are likely not covered by insurance. 

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Why would she do that? Still time for him to change his mind again. I would think his oncologist would be trying to get him to do what needs to be done. 

I cannot fathom someone, anyone, trying to convince me to not get treatment that is both tolerable and effective.

So sorry

Tom

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Can you get him to take a look at the posts here? If he opts out of treatment altogether, he has probably a matter of months (and he's likely to have poor quality of life in the meantime, as the cancer progresses). On the other hand, if he treats it, he COULD have 10 years or more of good quality life. Maybe even longer. No guarantees, but at least it's a chance.

You don't have to badmouth his daughter, just tell him you've been so encouraged by the experience of so many people with advanced lung cancer, who are MANY years out from their diagnoses. I get your hesitance to overstep your place as a non-family member, but this is a matter of life and death. And it seems to me he is hearing bad information.

And just in case the idea of getting the port upsets him, I can't say enough great things about my port. It makes getting my chemo, and blood work, as easy as pie and virtually painless. 

 

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I agree with Lexi.  Send him some posts and he can even join one of the virtual meetups if he would like to ask questions of lung caner patients and survivors.  There is a lot of hope and the statistics online are all from five years ago.  So many advancements have been made since then!

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Yes, just to elaborate a bit on what Kristin said: If you notice, when you read survival statistics, they all talk in terms of the number of people who survive five years after diagnosis. What THAT means is that all of those people were diagnosed AT LEAST five years ago--before immunotherapy, for instance, was even on the scene--which is helping people live for YEARS longer than they once could. Many of the discoveries and drugs that target specific mutations are also VERY new.

The statistics also represent averages. Many people live significantly longer than the "average. And, of course, some live a shorter period of time, but remember, lung cancer patients as a group are also more likely to suffer from heart disease and COPD, and often are older. Folks who are younger and in better health to begin with often do better, as well.

And the other thing for him to think about is that IF the treatments become too difficult to bear and are doing no good, he can ALWAYS stop them. He still has that power if he chooses to use it. But under the circumstances, it's foolish not to give it a try and see how it goes. OTOH, if he waits too long to begin treatment, the cancer will continue to advance and it may be too late for it to work.

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I’ve spent last night in a panic and today in tears.

I called his oncologist’s nurse (knowing that I am not on his HIPAA and made that clear upon starting the conversation), and said it was my understanding that I could tell her information, but I could not receive info that she confirmed.

I told her what had transpired. She was rather curt with me and said she knew who I was, and that they were aware of his daughter’s position. When he was hospitalized the daughter kept balking at treatment for “financial reasons” and it took the whole team to reiterate that radiation was standard care to squash that roadblock... I voiced my concern privately to his Hospitalist and she was so grateful that I did, as the team could not fathom why he was balking at treatment. The daughter! That is why!!

I said to the nurse that I understand the prognosis is not great with a PD-L1 expression of 0, and only the HER2 mutation. To which she replied, “Yes that is not good at all.”

Ummm, excuse me but no one has a crystal ball and is it truly not worth a shot? He can always stop if treatment is hindering his quality of life. So that got me nowhere.

As of now his appointment for the port placement and infusion has not been canceled. So maybe he’ll go through with it.

We do not live together and his daughter is INSISTING that he move in with her (!), so he is at her house on lockdown now, for sure. 

As if this diagnosis is not stressful enough, now we have this power struggle and discord happening. This is LIFE or DEATH. I am at a loss... just trying to sit back and stay out of it until I get him alone. If that happens, I will show him every post on here.

Thank you all so much!

 

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No other children. He is not close to his brothers and sisters, but does have a few close friends that could maybe talk some sense into him. His next scan is not until March 31st. That seems far away... I was hoping one round of chemo/immunotherapy may show some regression so that she may get on board for future treatment. Still not giving up!

 

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Islandgirls,

Sorry I am late to this string of posts. I've been snowed upon and without power for 4 days....

I've survived 17 years after my diagnosis with late stage non small cell lung cancer. I've had 3 major surgeries, a host of minor procedures requiring anesthesia, 30 sessions of fractional radiation, 18 infusions of taxol and carboplatin, and 3 sessions of CyberKnife precision radiation. All this was before the advent of the many effective targeted treatments and immunotherapy. My point in reciting my treatment experience is that if I can live, so can your boyfriend.

Send him this, and this and this.

Stay the course.

Tom

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Thanks everyone!

Today is my last hope to show my boyfriend data on why to seek treatment. He just said to me, “The outcome is the same with or without the chemo. Can you please just let it be?”

I told him to hold off canceling the port appointment until I get over there to show him this forum.

I started a new topic in General about needing backup. Please repost over there if you don’t mind. I’m hoping for an outpouring of support on the side of treatment. He is just so uninformed, as is his daughter. Praying something one of you says will be the spark he needs.

Thank you!

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FYI....I do not see your other post.

I wish you luck and I hope your successful. We all leave this earth in the end.  Question is when. I will do my damndest so it isnt soon and until the treatments actually get so bad it's not worth it I will not stop. Fir sure I won't stop till I atleast give that last potential treatment a shot.

I do not fear death I more fear how my death will effect others...like my wife, kids and dear friends.

Peace

Tom

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@TJM, exactly my thoughts. Last year when I almost died I didn't think about myself, I was only worried about the ones I leave behind. As I told the psychologist who visited me in the rehab facility, we all die at some point and I've made peace with it.

However, like you and the other warriors, I'm giving it all I've got first. I've gotten a second chance at life and I'm not going to waste it. 

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