New Member- T2N1 AdenoCarcinoma Rt Upper Lung

[JimP]

Hello: I was first diagnosed with a 2.8 cm nodule in my rt upper lunng on 8/4/23.  Prior to that I had some flu like symptoms including a dry cough.  I thought maybe it was COVID, but my test was negative.  The symptoms went away except for the cough.  So a couple of weeks later I went to an urgent care that had an XRay machine.  They saw the nodule, and recommended I get a CT Scan.  I did that and got the results of the 2.8 cm nodule.  The thought it might be non-small cell adenocarcinoma. I was referred to a local San Antonio oncologist.  However, my sister, a breast cancer survivor now for 25 years, and brother in law, a non hogkins lumphoma survivor for probably 15 yiears recommended that I go to MD Anderson in Houston.  For those that don't know, MD Anderson is about a 3-4 hour drive from San Antonio.  I opted to go there.  I called immediatiately and was scheduled to meet a surgeon, get another CT Scan, a Pet Scan, lab test, meet with a radiologist, and a medical oncologist.  Initially they thought I had caught it early, and probably had stage 1 lung cancer.  This they said could be treat with 4 treatments of radiation from a particular device, that. would cure the cancer.  That DX was put to rest by the Pet Scan, which showed spread to a lymph node nearby.  I was then scheduled for a biopsy, where they confirmed the lymph node spread, along with the nass of 3.2 cm in the upper right node.  There was also some small 5mm nodes along the bottom of my lung in the pleura, too small to biopsy.  After discussion they thought that there were probably not malignant and would just watch those over time.

At that point, I left Houston, but was resceduled to meet with the surgeon following their meeting.  He wanted to meet me again in person.  It seems that when you get old enough (I'm 78) you may not be in good enough to have surgery.  I've always prided myself on athletics and exercise.  These days I primarily exercise.  I belonged to a gym for years, but it was shut donw during COVID.  So we bought an elliptical machine and a weight system that we installed in our house.  These days I do the elliptical most days for about 35-40 minutes, and I do some weight lifting 3 times a week.  When the surgeon interviewed me he asked alot of questions about my exercise, and in the end told me that he was impressed with my physical condition and that most 78 year old did not exercise.  He told that his plan would be to use. a bout of chemo therapy, and immunotherapy to shrink my tumor, then do surgery.  He said that this could get me to a 'cure".  Naturally I was all for that, without asking many questions about the "cure".  He did tell me the surgery was risky, I had a 3 % chance of death.  I also have a pacemaker in my right upper chest, which complicates the surgery, he was worried about that (as am I).  Siince returning home I've done some reading about the surgery, and at this point I have alot of questions, like what type, etc etc.

So my chemotherapy has started.  I had my first cycle about 3 weeks ago.  They gave me Carboplatin and pemetrexed, along with Nivolumab which is the monoclonal antibody used for immunotherapy.  All in all I would say that the first cycle went fairly well based on how I read it could have gone.  During the infusion they also gave me alot of steroids.  Apparently that helps with things like nausea.  I was also prescribed several drugs like ZOFRAN, to be used if I start to get nausea.  Dexamethasone, which I took for a few days after the chemo, and a drug named olanzapine which I took for several days following the chemo.  It has some off-label uses for cancer. They also prescribed folic acid daily.  They had also given me a shot of a drug 24 hours after the chemo that boosted my white blood cells.  So following this first regimen there were two things that stood out:  first, the first few nights I only slept 3 1/2 hours per night.  Second, I ate like crazy, especially things like chocolate chip cookies, cake, and ice cream.  I'd leave the house at the crack of dawn to get over to the local pancake house.  I managed to put on 10 pounds.  And funny enough, I had always thought I was 6'3".  When a doctor would weigh me they always asked me how tall I was, and the last time I was measured was probably when I was in the military, years ago.  Well apparently over the years I lost 3".  I was shocked!  I made them measure me again because I thought they'd made a mistake.  Nope 6'.  I had lost 3" over the decade.  So the combination of losing 3" and gaining 10 pounds is a disaster for your BMI!  Toward the end of my first cycle, I was exhausted.  I had been able to sleep5 hours, but I was having trouble exercising.  One day I could only do the elliptical 5 minutes.  Another day I just skipped.  The morning of my second infusion I did do 20 minutes on the elliptical, and felt ok, but was again exhausted later.

So yesterday I did my 2nd infusion.  I've been pretty tried since then as well.  A few times I felt a little nausea starting but I popped a pill, drank some ginger ale, and it went away.  But as I write this at 2AM, I'm wondering how much sleep will I get. 

Honestly folks, the chemo as been easier than I expected, so far.  I'm only going to have 3 cycles of chemo, and then if it went OK and shrunk the nodule they will do the surgery.  I feel optomistic up to now, and if I can break thru this fatigue, get back to some steady exercise I think that will help me with the surgery.

Finally I thought I would mention that I am a Vietnam Veteran.  I was exposed to Agent Orange.  Lung cancer is a presumed to have been caused by Agent Orange.  My first summer job when I was 16, I bagged asbestos.  Ouch.  I remember leaving the plant and could hardly breathe.  No one thought anything of it.  But as far a MDAnderson is concerned my heavy smoking for 35 years is all they needed to hear.  Apparently the fact that I quit for 20+ years did not make much difference.  And when you get right down to it, I have lung cancer regardless of cause.

 

 

 

[LouT]

Jim,

Welcome to our forums and thanks for all the detail, I read the whole thing.  I also want to thank you for your service and tell you that my best friend fell victim to Agent Orange with mortal consequence, so that is a very real thing.  Okay, now on to your topics.

Your sister is one smart cookie.  MD Anderson is a great place for you to be getting treatment.  I can't comment on your specific treatment as my treatment was surgical.  But our family here has many survivors with just about any experience you can name and I know you'll be hearing more from them soon.

When the time comes for you to get your surgery I have "Tips and Tricks" to share with you to help you prep for it, get through it, and recover well.  But in the meantime I do want to share some other information.  Some is general, but pretty important once you've been launched on this journey of Lung Cancer.

1. One of our members (also a Vietnam vet) was diagnosed with Stage 3 LC (lung cancer) then with Stage 4.  He's still here 19 years later to share his wisdom and learning.  Please take a look at his work "10 Steps to Surviving Lung Cancer; From a Survivor". (just click on the link).

2. For some information more focused on your present treatment please take a look at our "Chemotherapy" forum, as well as our "Immunotherapy" section.

3. Finally you can take a look at our section for "Veterans".  There aren't many posts there, but some of what is there may be of interest to you.

Also, please stay away from Dr. Google as many of the predicted outcomes are based on 5-year averages, don't take into account individual factors (e.g., your workouts), and also don't account for the new treatments that are constantly being used today. 

I look forward to seeing you on the forums.  Please feel free to ask questions and we'll do our best to answer from personal experience.

Lou

[JimP]

Thanks for your comments Lou.  I didn't realize how much I had actually written.  Sorry to put you through all that.  I have a question that I would like to ask you.  I'm currently attempting to decide what Medicare Part D plan I should get.  The process to use the Medicare tool to enter drugs that then give you back several companies who would have a formulary that would fit those drugs, along with costs, etc.  The problem I have is that I don't have a clue what drugs I might need in the future given my cancer circumstances. I do have the VA.  But I have found that their formulary is fairly restrictive already.  My primary care physician seems to want to be cooperative, but has had to change a few prescriptions which I then had to buy myself....hence my desire to look into the Part D plan.  I wonder if you have a few ideas of drugs that my be necessary at some point down the road.  I stress the word "might' because neither of us. could possibly know for sure.  I'm just trying to put some type of list of potential drugs for the future that might give me a clue as to which plan might be appropriate.  For instance, one drug I was prescribed by MD Anderson was Trelegy Ellipta.  It's a mixture of 3 drugs used as an inhaler for COPD.  The VA was unable to prescribe it.  I can pay cash for it through HEB for about $700 per month.  So I have added it to a list.  But there are likely other drugs that could possible come up.  Pain pills?  Medicare Part B pays for drugs that are infused.  They don't pay for pills that cannot be infused.  That's how I understand.  Just wondering if you or someone might have a few Ideas.  We're in the selection period now to decide for next year.  Thanks in advance for any ideas.

Jim

[Tom Galli]

Jim,

I'm a veteran and a lung cancer survivor who's navigated the complexity of VA medicine. I also have a "PhD in inhalers" with three different types in my inventory. MD Anderson is a super hospital and attending physicians always prescribe the latest and greatest medication on the market. And new inhalers proliferate. Here is my suggestion. Take your MD Anderson prescriptions to your VA hospital and ask your assigned VA physician for a consultation with a VA pulmonologist. The VA pulmonologist should be able to prescribe an inhaler (or combination of inhalers) in the VA drug system that works just as well as the Anderson-prescribed Trelegy Ellipta.

Of course, the hard part of the aforementioned is waiting for a VA physician appointment but free drugs might be worth the wait.

Stay the course.

Tom

[LouT]

Jim,

I think Tom nailed the answer for you.  Please let us know how this works our for you.  

Lou