Need Backup For Why to Seek Treatment

[islandgirls]

My boyfriend (age 55) was diagnosed stage iv with brain Mets (innumerable) and has undergone 10 days of WBRT. He has tolerated treatment very well, with his only side effect being tiredness.

His PD-L1 is 0 and the only mutation found was HER2.

Oncologist has recommended the triplet, however I suppose in the presentation it was interpreted that with or without treatment he only has months.

Hearing from survivors on this board, I feel that this may not be accurate information. I know that currently at MD Anderson there is a clinical trial for HER2 underway RIGHT NOW. So my thought is, if a round or two of the triplet can give him some mileage, then perhaps a breakthrough could happen for his mutation as has happened with previous ones.

This all being based on his quality of life not being destroyed by seeking treatment.

If any of you have similar circumstances and can weigh in on the positives of not just throwing in the towel, PLEASE chime in! I am going to see him today and want to show him the responses.

Many thanks!

[LexieCat]

The way I look at it, LIFE is a terminal disease. No one on this planet gets a pass on dying someday. The goal is to have a good life for as long as you can.

I've got Stage IV adenocarcinoma. No brain mets, but it has spread to my bones. Will I someday die of this disease? Maybe--maybe even probably. BUT if the treatment I'm on gives me another 5-10 years (or even more--we have survivors of advanced cancer 15-20 years out) of good quality of life, I'll take it. The survivors who do well on treatment aren't bedridden and suffering--they are enjoying life, traveling and having fun and spending time with family and friends (or they were before COVID).  

When you look at statistics for survival, they are based on 5-year survival. Meaning anyone counted was diagnosed 5 years ago or longer--before immunotherapy and other targeted cancer treatments came along. I sometimes think the whole trick to living a long life with lung cancer is to stay alive long enough for the next treatment and discoveries to come along. 

I'm was on the triplet. I had four rounds of Carboplatin, Alimta, and Keytruda. It was quite tolerable--the side effects, while annoying, were minor. I never lost my appetite or suffered with serious nausea, nor did I lose my hair. There are treatments to prevent a lot of the more unpleasant side effects. I'm now on maintenance therapy, which consists of just Alimta and Keytruda. The plan is that I will continue with that indefinitely. I have fatigue and some brain fog, but nothing terribly serious. 

There COULD come a time when there are no treatments left to try, and where continuing to try to treat the cancer will cause more harm than good. If that day comes, yeah, it can make sense to stop treatment. From where I sit, though, it makes no sense not to try. Nobody can say for sure whether I or anyone else will be one of the people who responds perfectly to treatment and winds up a long-term survivor. To me, it makes sense to try whatever available treatments there are, as long as they are tolerable. When/if they become Intolerable, I can always stop them. Anytime. 

[TJM]

I dont know if I am a 15 year survivor or a 1 year survivor.  What I do know is my cancer has a high probability of coming back. But right now, other than my damn ankle being broken, I feel good.

I'm not yet even 60. My wife and kids need me to be around. I am already trying to figure out next line options. I will try whatever treatments might help. If they dont work, they dont work. If my quality of life deteriorates to the point it's not worth it I will stop..but not till I try it. And I also think we are on the cusp of more major breakthroughs, so delay, delay, delay is also my strategy.

Finally I believe you said he has just finished radiation? Radiation kicked my arse. The fatigue was really surprising. But it went away and I would do it again if it is called for.

Peace

Tom

[Judy M2]

I got the shock of a Stage 3b diagnosis in October 2019 at age 66. My primary doctor, who delivered the diagnosis, said that lung cancer is no longer a death sentence. Of course, I did not believe her at the time. 

I am a member of the 9/11 survivor community. I could have died on that day but happened to be in the right place at the right time. However, this disease is my "souvenir" 18 years later. 

For treatments, I went through 30x of radiation and 6x of chemo. At the time I didn't know to engage a palliative care team, so when I developed severe, painful esophagitis from radiation, I was kind of on my own. I feel like what happened to me was extreme and a failure of my team. But over the next 8 months, I persevered and recovered. 

I have an EGFR mutation, so I've been on a targeted therapy for 11 months now and doing "amazing" according to my oncologist. I mostly feel good and can walk my dog (wearing a KN95 mask) for our usual 45 minutes each day and have resumed my normal life, with Covid restrictions. 

I know that someday I will get progression, and I'll deal with that if and when it happens. But for now I am grateful for any additional time I'm given. Plus the research that is happening now gives me hope for the future. My oncologist believes that hope is the best treatment out there. 

For me, I am giving it all I've got. We are lucky to be living in a time of so many scientific breakthroughs. I'm sure our predecessors would wish they had had our options. Best of luck. 

P. S. I have health care proxy for my father, whose health  recently declined (not due to cancer). Although he is 99 and has been under hospice care since August 2019, I recently had to sign a DNR regardless of any health condition he might have. Because he has a written advance health directive, I know I did the right thing. But it is guilt-inducing nonetheless. To have control over whether someone lives or dies is, for me, overwhelming.