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PCW

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Hi Everyone,

I am a 60-year-old new retiree, have just been diagnosed of adenocarcinoma in my right lung. Malignant cells were found in my pleural fluid. My oncologist said base on that finding I have stage 4A . I’m now waiting for results of my biopsy, pet/ct and MRI of my brain. I have very mixed emotions, sometimes angry, resentful. I feel terrified of the prospect of losing my independence as an individual.

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Hello!  I am 61 and was diagnosed with Stage 3A in Fall 2019.  Also had a mass in my right lung and one of my lymph nodes in my chest was enlarged.  Went through 6 treatments of carboplatin and taxol chemo treatments and 30 treatments of radiation.   These were done concurrently.  If you get radiation, that really DOES HELP!  The worst negative with radiation was the esophagitis (inflamed esophagus) that occurred about halfway through.  Very difficult to swallow.  Chemo caused some stuff, especially water, to taste metallic and some things just didn't taste good or they were bland.   I also had fatigue but I think it was a "pleasant" mixture of the radiation and chemo.  I received a couple of anti-nausea meds at the beginning of each chemo treatment so nausea wasn't really an issue.  6 weeks sounds like a long haul but it really did go fast.  The esophagitis does subside within 10-14 days after your last zapping.  Treatments can be harsh but you will recover from them.  Your oncologist can provide you with a sheet of "survival tips" plus the good folks on this forum are a priceless resource.    

I did enjoy about 6 months of being "NED" (no evidence of disease) but then some miniscule blips were found on my adrenal glands (which is a very common place where lung cancer likes to go).   So I, too, am Stage 4.  I just finished up with 4 treatments of 3 different chemo drugs and have a scan this Friday and am hoping that this did the trick.  I'll probably be on maintenance in order to either keep the stuff gone, inactive, contained or whatever. 

A piece of advice that I want to give you is absolutely do not pay any attention to any statistics you see on the internet, no matter where you see it (we call it "Dr. Google" on this forum ;) ).  Those are based on old data and don't include those of us who are blessed to have all these new treatments available to us.  Lung cancer is starting to be treated more as chronic disease.  Horrid to have to co-exist with but lung cancer patients are living longer than ever and even thriving!  There are a lot of long-term survivors and thrivers on this forum....and some are old-school who did not initially have the treatments that us newer ones have available.  

I went through the same emotions that you are going through.  I was at a point where I had started looking forward to retirement in 5 years, for example, to wondering if I was going to see retirement.  You know what?  I'm STILL planning for retirement.....because I'm going to be here!  And so are you!  :)  Hang in there and know that we are here for you!   

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I can echo Sandy N. I was diagnosed with Stage IIIB in October 2019 at age 66 (a little more than a year after I retired) and had the exact same radiation and chemo regimen. My esophagitis was worse but it eventually cleared up. 

It's important for you to get biomarker testing of your biopsied tissue. I was found to have an EGFR  mutation and have been on a targeted therapy since March 2020. I'm doing very well today. I walk my dog for an hour each morning and do everything I used to do before treatments (except for Covid-restricted activities).

Waiting for all your results and treatment plan can feel interminable, so hang in there. You'll hear from others here with Stage IV disease who are also thriving with today's modern treatments. 

Your emotions are normal and understandable. You have an awful lot to absorb and no path forward just yet. Take it one day at a time. You can get lots of info from this site and the GO2 Foundation in lieu of Dr. Google. 

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Hi, there, and welcome.

I was diagnosed with Stage Ib back in 2017 and had surgery (upper left lobectomy). I was doing well until three years later when my followup scan and further testing showed it had spread to some lymph nodes and to a single spot on my sacrum, which made me Stage IV. Since then, I've had chemo and immunotherapy that shrunk the cancer to virtually nothing and am continuing on a chemo and immunotherapy regimen as maintenance.

I was on my post-retirement career but have had difficulty continuing to work due to fatigue and brain fog (I have a pretty intense legal-research-type job), so I'm out on disability. BUT I live alone and VERY rarely need help with anything--at least not that would be attributable to the cancer. The effects impact my ability to do that job (or similar work) but it's not crippling or anything. So I wouldn't worry about losing your independence. Chances are you'll continue to be able to do whatever you were doing before, even if you have to pause some activities while you're on active treatment.

You'll know more and figure things out as you get your test results back and your doc has a treatment plan. You're lucky to be in NYC, where you've got a ton of great cancer treatment places.

Oh, one other thing. People with Stage IV lung cancer are automatically eligible to receive Social Security Disability (SSDI). The advantage of that is that it pays a benefit equivalent to what you would get if you filed for retirement benefits at your full retirement age. I was hoping to postpone collecting Social Security until I hit age 70 (I'm almost 65 now) but the SSDI gives me a bit of a boost to what I'd get at full retirement (66 and 4 months). It's easy to apply online and I was approved about a week after applying. There is a 5-month waiting period (6 months till you get a check), but it does help. Also, anyone on disability is eligible for Medicare after 2 years, regardless of age, so that might be helpful for you too, depending on your health insurance situation.

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Hi!

Thank You all for sharing your experiences and valuable info. I am anticipating my oncologist’s  appt tomorrow. Hopefully ,with all results,  I can have my treatment plan and a deep look into the pros and cons with a lot of emphasis placed on the quality of life. I don’t have any genetic info regarding my cancer yet. My parents both lived till 90, died from dementia and CHF. I never smoke and ‘drank’ more than a couple of beers occasionally. But I am mad at myself for not being protective to myself. Before retirement, I had spent a couple of decades mixing chemo preparations as a chemo pharmacist. At the time, regulations were more relaxed. Half opened hoods were utilized where approximately 30% of the recirculated air would escape out of the hood. I have just been advised by my psychiatrist not to contemplate the possibles causes of my cancer since that can only bring on negative feelings. Once again, big thanks to all your replies!

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PCW, I totally get your regret because I have it too, but for a different environmental reason. I'm a member of the 9/11 survivor community, and I although I couldn't get to my job in Lower Manhattan that fateful day, I did return to work the following week when everything reopened. I continued working in the exposure zone for more than a year. My lung cancer is presumed to have been caused by the toxic dust we all inhaled, mask-free. (I am enrolled in the 9/11 Victims Compensation Fund.) 

Initially, I berated myself for not changing jobs at that time and working in Midtown. But I've had to let the guilt go, or otherwise it could consume me. I hope you can find your way too. The reality is that anyone with lungs can get lung cancer, so don't blame yourself. Hope you have an informative appointment tomorrow.

BTW, the genetic (biomarker) testing refers to an acquired (not inherited) genetic mutation. There are instances of inherited gene mutations, but more common are the acquired mutations that randomly occur and cause cells to grow out of control. 

P. S. I see you're from Brooklyn. My good friend lives in Bay Ridge, and she told me that debris from the WTC rained down on her neighborhood for weeks afterwards. You may want to check to see if you lived or worked in the exposure zone, as explained at www.vcf.gov.  If so, you too could be eligible for the 9/11 Victims Compensation Fund and the World Trade Center Health Program. 

Edited by Judy M2
Added P. S.
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PCW,

Welcome here! I was diagnosed in February 2004 and am one of those "old school survivors" among the forum participants. I was 53, in the prime of my life with a dream job, two uber-fast Mercedes in the garage, and a beautiful woman who for some strange reason loved me. Then came the mayhem of lung cancer, but I've lived through every form of treatment except immunotherapy and my bottom line is if I can live, so can you.

Lexie's SSN application advice is sound. Sandy's suggestion for avoiding Dr. Google and survival statistics is wise. If you feel the need to do some research, this is a good place to start. Here are my suggestions for smoothing your course to survival. Questions? This is absolutely the place for those. While oncology professionals know all about the disease, few understand how it feels to have it. We have that expertise in spades!

Stay the course.

Tom

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Hi Everyone,

Judy, thanks for your advice. Tom, thanks for your ‘booster shot of hope’. Just got back from oncologists appt: doesn’t look good at all. We are still waiting to see if I have EGFR mutations. Other than that, my malignant cells are moderately differentiated. It basically means that my cancer is moderately aggressive. But alas! It has metastasized every where: my adrenal glands, liver, spine, sacrum, nymph nodes and my left lung. MD said without treatment I would have approximately 6 months to live. So far my brain is intact, that’s why I’m writing this message to you guys now? There’s a strong possibility that I’ll be on Tarceva if i have EFGR mutations and I doubt if it’ll help . I’m also considering palliative care so to escape the debilitating effects of chemo. My mind is so overwhelmed now, been thinking a lot about moving to Oregon. Pardon me for  any typo or grammatical error, I’m just typing anything that comes out of my mind.

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I know all of this is pretty overwhelming, but I don't think you need to be throwing in the towel just yet. First, you mention EFGR mutations, but you could have others that are actionable. And I'm not sure why you think Tarceva wouldn't help. And in addition to targeted therapy (e.g., Tarceva), chemo and immunotherapy can both be highly effective, even with metastases. Palliative care is a good idea, but you do realize that's not the same as hospice, right? You can have palliative care to help mitigate the side effects of treatment and improve the quality of life even while you are getting treatment.

I had very little trouble with chemo. The same is true for many others here. I don't think you should be thinking about foregoing treatment until you've given it a chance. You could have many years ahead of you--you won't know until you try. 

Incidentally, my cells are "poorly differentiated." I've had a good response to treatment.

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PCW

Sorry to hear the news, but listen to what Lexi said. There is always hope and the treatments are (so far) always much easier to bear than I feared.

Small world. My sister in law (from Oregon) also lives in Brooklyn. I assume you have ties to Oregon? If they are in Portland be prepared to be shocked. The city has fallen apart over the last year...to a degree I never would have imagined. I'd rather be in Brooklyn than Portland!

Wishing you the best

Peace

Tom

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Hi TJM,

I’m afraid to offend anyone here, but I need to clarify this: the reason I want to move to Oregon is that ‘physician assisted suicide’ is legal there.

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I'm not offended at all--I think it's good to have the option when it makes sense to use it. But immediately after a diagnosis, exercising that option really doesn't make sense, to me. I'm not suggesting anyone live a life of misery for the sake of extending it. What I'm saying is that you don't even know yet how you will feel while undergoing treatment, nor how successful that treatment will be. 

I just think you should slow your roll and see how you make out with treatment before making plans to pack it in.

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Hi Everyone,

Lexie, thanks. Your advice makes a lot of sense. Two years ago, I got an episode of major depression, caused by various factors. One contributive factor is my decreased right eye vision due to Macular pucker, which  led to my early retirement .  I suddenly realized the importance of  good health in order to have good quality of life.  Right now, my most debilitating symptoms are shortness of breath and persistent cough. I actually have had a few episodes of coughing syncope due to overstimulation of the vagal nerve .  Now my coughing is somewhat under control with the non narcotic combo promethazine/dextromethorphan and a beta blocker. Unfortunately   My cancer has metastasized to multiple organs. A couple of months from now, I might be paralyzed or wheelchair bound. Cancer is in my ilium, sacrum and spine. Or It might spread to my brain, and a sound mind is one of the criteria to seek “physician assisted suicide’.  It’s also in my liver and adrenal glands. This is just a reality check and I’m just wondering if a pill of Tarceva is enough to stop its progression. I feel like I’m at a point where I have to make a decision, with no turning back.....

BTW, ‘poorly differentiated cells’ tumor is more treatable by comparison.

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No, "poorly differentiated" tumors are more aggressive: https://www.mypathologyreport.ca/definition-poorly-differentiated/ : "In most parts of the body, well and moderately differentiated cancers tend to grow more slowly and are less likely to spread to other parts of the body. In contrast, poorly differentiated and undifferentiated cancers are aggressive tumours that grow quickly and spread earlier to other parts of the body. Your doctors will use this information to help plan your care."

Either way, though, those of us who have been dealing with this disease for a while have learned that even though statistics and pathology reports, etc., can be somewhat informative, every person and every cancer is unique. You can have two people with similar test results and similar treatment and one will do great and the other will have progression. There is still a lot not understood about how cancer and drug treatments work.

So my biggest point is that it's worth taking a chance. Member Tom Galli was researching hospices after several unsuccessful treatments, when he was offered the precision radiation treatment that saved his life. He's just been pronounced "cured" after 17 years. He'd tell you he doesn't feel as well as he did before cancer, but he's on the Board of Lungevity and, up until the pandemic, taking regular cruises with his wife. A lot of us start off with one kind of treatment and then have to switch to something else that works better. Sometimes more than once. And sometimes that second or third treatment is the one that turns the tide.

I'd also add that when lung cancer does advance in spite of treatment, it's usually slow enough that you would have time to make decisions and relocate if that were your choice. 

There is a lot of uncertainty with this disease, but there are enough people here who are long-term survivors, and enough new discoveries and treatments coming along, that it makes sense to have hope that you'll be one of the ones with that kind of experience. I sometimes say the key to surviving lung cancer is to stay alive long enough for the next big scientific development. If you stick around here, we can help you navigate this thing.

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I'm piling on with Lexie. I'd also recommend engaging a palliative care team now, so that if you do have pain, they'll be familiar with your case and can treat you quickly, rather than figuring out that aspect when you're feeling rotten. 

Let's see if you do actually have an EGFR mutation. Tagrisso is a 3rd generation drug that is very effective and well tolerated by many (including myself). There are other mutations that have their own targeted therapy. You need your biomarker test results. Take this one step at a time. Hang in there. 

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16 hours ago, PCW said:

Hi TJM,

I’m afraid to offend anyone here, but I need to clarify this: the reason I want to move to Oregon is that ‘physician assisted suicide’ is legal there.

It is also legal in Washington State. Do not at all think you offend anyone. In the spirit of full disclosure, the laws are a sham. In order to "preform" assisted suicide the physician must follow strict rules with no exceptions. The dumbest rule is the method. It requires you to swallow an ungodly number of what I call "horse" pills.  I figured out fairly quickly, as my brother approached the end, that he wasn't physically capable of swallowing those pills. I have a dear friend whose husband (an actual brain surgeon) is nearing the end as well. He also is unable to follow the proscribed method because his digestive system has completely failed. In his case I know he would choose that path at some point....but it is not possible.

Not being pro or con assisted suicide, but damn, if we are going to allow it then let's make it humane. We treat our pets, hell convicted murderer's, better than we do seriously ill individuals who consent.

So, for me the option is off the table. By the time I might consider it, it will be to late. That's ok. I will have backup plans if needed. But it really is totally unfair. We on the left coast tend to "talk the talk" exceptionally well on most things....yet we suck at "walking the walk" on almost everything.

Peace

Tom

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Hi there, I just wanted to share some information on EGFR treatments: https://lungevity.org/for-patients-caregivers/lung-cancer-101/treatment-options/targeted-therapy

Are they testing for more than EGFR?  Comprehensive Biomarker testing is important because it tests for all biomarkers, not just the most common: https://lungevity.org/for-patients-caregivers/lung-cancer-101/diagnosing-lung-cancer/biomarker-testing

Lung cancer treatments and breakthroughs are changing daily.  There is no reason not to be hopeful.  A lot of people live with lung cancer just like they would any other chronic condition.  A lung cancer diagnosis now is not the same as it was years ago.  We are here to support you.

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Either way sounds like you will have to go through something.  Thanks TJM, I had not looked into the laws and how dumb is that to have to swallow pills?

I would say depending on the uptake you have in other places can maybe help you determine to do treatment or not?   My husband was given 3-4 months at diagnosis with no treatment.   Treatment extended his life-with a good quality to 7 months.  His was a much more aggressive cancer than yours.  His decline was during the brain radiation, so to me, if it's not in your brain yet, I would try treatment.  Just my .02.  Sorry, I know it's a devastating diagnosis, but you're still alive.

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I'm also going to jump on the "don't throw in the towel just yet" team. All of this sucks. It does and no one can tell us otherwise. Thoughts of chemo and radiation and fatigue are just too much. But some of these treatments can provide some relief from symptoms and give you more time to make all the plans and decisions you need to make. Whatever you decide, we're here for you so lean on us.

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Hi Everyone,

Thank you all so much for your up lifting messages. Special thanks to Lexie, I just made a phone appt to apply disability benefit. I’m entitled to almost the same amount of benefit as  the social security benefit when I turn 62.  That would be a big help with the cost of chemo or target agents since my insurance doesn’t cover the entire amount. I still haven’t got the result of my EGFR mutations yet, Mount Sinai is taking its time. My oncologist through the help of a radiologist assured me that there’s no sign of breakage in my spine and bones,  yet. After consideration, I think I owe it to myself to give it another try. I ‘ll  probably seek palliative care along with my prescribed treatment, all on hold waiting for the result.  I’m not complaining, but  the most distressful symptom is my Shortness of breath; I walk the pace as a 90 year old, can’t climb a flight of stairs without whizzing. I anticipate worse symptoms to come but I’ll try my best 🙂 to deal with them. Regards to you all..

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Your shortness of breath may clear up quickly with treatment. I'm fortunate that I've never had any symptoms directly related to my cancer (e.g., no coughing or sob), but I've heard from others who got quite a bit of relief once the tumors started to shrink.

Keep us posted--we've got your back.

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A lot of those pesky side effects can go away quickly once treatment is started, especially if you get radiation. I coughed like crazy and once my tumor was removed, the coughing stopped. Seriously - I haven't coughed much in the last 5 years!

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Hi Everyone,

kristin, my oncologist just prescribed hydrocodone and methyl prednisone for my SOB and cough. Hope these will do the trick. At the pharmacy, outta curiosity, I inquired the cost of 30 pills of Tarceva: $18000 per 30 pills😬?! 

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