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How long can stage 4 lung cancer patients live without treatment?
My husband was officially diagnosed with stage 4 lung cancer in Sept 2024. He went for one treatment in December and the last one on Jan 2 of this year. He decided then that he would not take any more treatments because they made him very sick. Shortly afterwards, I got Hospice involved. So since he no longer sees any doctors, I have no idea whether or not his cancer has spread or anything else that may be going on in his body. Guess that is how hospice works. They are the only ones he sees and those are nurses. No blood work or anything. This is all new to me and I am not sure how a person with this type of cancer should be. He only sits in his recliner and watches TV. He can walk to the kitchen and make his own coffee or microwave a meal. I would gladly make him food, but he just wants to do it himself. But other than that, he does nothing else except count his pills. He is obsessed with his pain pills. Oh, and he clears his throat constantly. He said he can't swallow the phlegm that collects in his throat. He has been taking more than he should and today the hospice nurse brought a lockbox but she also said that he did not need to use it. twice they have noticed that the pain pills have been short way before they should have been which is no surprise to me as he is and always a pain pill addict. I worry that he is going to keep taking more and then hospice will not help him anymore. The nurse told me that this morning. They keep a very close on his meds as they should. But back to my original question. How long can a cancer patient live without treatment? He only weighs 90 pounds and can only eat a little at a time. He does get confused as to dates, etc. I have heard of people who lived a long time with lung cancer but I don't know if they had done all the treatments or not, And how was their lifestyle? My husband does nothing pretty much. He can't go in the car or visit anyone. And I pray that he does not abuse his pills because I could not stand to see him suffer for months without pain meds. I realize that only God knows the days of our death, but I want to know what to watch for, how will i know if his kidneys start to shut down, etc., and how many months he has. A general idea would be great. It scares me and the day to day is hard. Any help would be greatly appreciated.
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Apologies. I have deleted a comment I added because I was responding to the original post instead of to the comment from bionicbeckyrocks. I have now added my comment as a response to bionicbeckyrocks. I think Denzie is right, the comment from bionicbeckyrocks should be a new discussion.
@bionicbeckyrocks
I took Tagrisso followed by the chem doublet (carboplatin and pemetrexed) and Rybrevant (amivantamab). The problem is that everyone’s reaction to treatment is specific to that person but here goes:
1. I took Tagrisso for 9 months, the first 6 weeks at 80 mg, then dropping to 40 mg because of side effects. Side effects were tolerable on the reduced dose.
Tagrisso did NOT work for me. The first 3-month scan after starting Tagrisso showed progression (ground glass nodules turned solid) and the 9-month scan (still on Tagrisso) showed metastasis to the mediastinal area between the lungs (the first time I had progression outside of the lungs themselves, although still within the chest cavity). I stopped Tagrisso.
2. I started the chemo doublet (carboplatin and pemetrexed) with Rybrevant (amivantamab). I had significant side effects (to me; my doctor kept telling me I looked good) but managed the first four weekly treatments and another treatment 3 weeks after the weekly treatments ended. I learned that my oncologist had been giving me the Rybrevant at a dose intended for patients who weighed 175 pounds or more. I weighed 124 pounds when I started the chemo/Rybrevant treatment but dropped to 103 pounds. The doctor agreed to stop Rybrevant but wanted me to continue the chemo doublet.
3. Before I could decide whether to do additional chemotherapy as recommended, I developed sepsis/septicemia. I spent three weeks in the hospital, followed by twice daily self-administered infusions of antibiotics at home for a month. It took almost six months before I felt like myself.
4. The kicker: the treatment worked. The growth in the mediastinal area resolved and nodules in the lungs either shrunk or resolved. I did not start maintenance treatments (usually pemetrexed and continued amivantamab/Rybrevant, possibly Lazertinib, every three weeks). I was still recovering from the sepsis and I was extremely reluctant to return to any treatment.
5. Six months later, I again have progression, into the mediastinal area again as well as increased size of the growths in the lungs. I am in the same spot you are: do I do treatment? If I do treatment, which treatment?
Datroway (datopotamab deruxtecan), also known as Dato-DXd, has been recommended as my next treatment. Recently, it seems that it is being recommended as the next treatment after failure on Tagrisso (https://egfrchannel.onclive.com/nccn-releases-nsclc-guideline-update-dato-dxd-designated-as-a-preferred-second-line-regimen-in-egfr-mutated-disease/ ), so it is a recommended option to Amnivantamab (Rybrevant). Datopotamab and Amnivantamab have different primary side effects. (Although Datopotamab lists hair loss as a side effect, I have read that it is more thinning than total loss. I did not have hair loss on amnivantamab.)
These decisions are very unsettling. I am not sure my experience can help but I’m too close a match to your situation not to respond, although I do not have metases to the bones, which would add to the urgency of your decision. I might even have made things worse by introducing another option to Rybrevant.
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5 ReactionsThank you so much for breaking down your experience. I just sit at home every day and ache everywhere. The headaches are terrible. I don’t know if the traditional chemo is the right route for me but I know it will cover the new mutation. Any help with nausea? Zofran and reglan aren’t working. Any ideas would be helpful
@lijda thank you for sharing your experience navigating these difficult treatment pathways. I can imagine how hard it must be to consider more chemo after having sepsis. hugs! I saw in a previous post you said that you have multifocal lung cancer. I also have 20-30 nodules and have the genetic T790M EGFR mutation. I was wondering if you have something similar?
Hi,
My boyfriend has stage 4 nsclc and this past week decided to discontinue his treatments also. My first thought was why hospice and not palitive care?
With palitive care he can still see doctors and get treatment if he chooses. Not to mention, he is Not locked into hospice, he can request to go into palitive care and stop Hospice. When the time comes for hospice, you will know!!
If he has (or had) a pain management doctor they can prescribe his pain medicine for him if he's in palitive care and your husband's primary care or oncologist can order a PET scan every 3 months so you can keep track of the cancers progress. But remember if he ever begins to get severe headaches, the PET scan won't show if the cancer has moved to his brain. He will need an MRI.
PLEASE DO NOT be too judgemental on the use of his pain pills as we don't actually know the extent of their pain.
Some days are better then others. There's a possibility that they may need to increase the strength or change what he's taking to help his pain.
At the present time, my boyfriend isn't in either palitive care or hospice. His oncologist has recommended him for palitive care so that if he changes his mind he can continue treatments or just keep an eye on the progression.
Keep the faith and enjoy the time you have with him. Love him through it and be there for him.
Hopefully this helps a little...
Sylvia
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5 ReactionsSylvia, @shellfinder . I'm sorry to hear that your boyfriend is facing this difficult decision. He's fortunate to have you by his side. I'm sure your guidance and love are helpful. Hugs.
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1 Reaction@mamajite
I have the exon 21 L858R mutation. I poked around a little bit about it versus T790M but the landscape is littered with rabbit holes and I haven't absorbed enough to be articulate. Treatments for both are similar. I too had 20 or so nodules.
I thank you for your question. I also poked around a bit about multifocal; Mayo has done a lot of work with multifocal and some of it sounds encouraging. Maybe I should get treatment again. (I have appointments next week with both my local and my consulting oncologists.)
Which of course brings us back to the quality of life issues. I recently came across the following quote: “Manageable toxicity is not a label — it is an oxymoron.” Good luck to us all!
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3 Reactions@lijda the way I understand it, my inherited T790M mutation makes it easy to develop lung cancer, but it still requires an activating co-mutation. Patients like me tend to have a lot of nodules, so I was curious if you might have a similar diagnosis. I have/had 3 known primary tumors, one of which has L858R and it responded well to Tagrisso. Most people acquire the T790M mutation as resistance to first line treatment, so their situation is a bit different than mine. Today is actually my first day of a treatment pause after 2.5 years on Tagrisso - so your quote is apt!