Living with lung cancer - Introduce yourself & come say hi

Hi Merry. I did go to the ER for 7 hours! They did a chest X-Ray and chest CT and EKG but could not come up with a good reason for the pain. They tried their best to keep me isolated. Finished my second round of Chemo on Friday and still not feeling well, bloating, nausea, coughing. They started me on the Granix shots. I have gotten two and need 3 more. Not sure if that is adding to the unwell feeling. Doctor has me set up for another PET scan on 3-8. If there is no improvement I am not sure what he will advise. He gave me the impression there is no protocol fir this. I would probably see if I could get in to see Wakelee at Stanford again. I see that MD Anderson has partnered with Scripps down by San Diego. My daughter lives down there but do I want to travel, start all over and inconvenience them? Will wait to see what the PET shows. Thanks for checking on me.

Good Day, everyone. I just found this group. My parents were big fans of the Mayo Clinic. My wife is from Minnesota and her parents have been to the clinic more than once, so I'm a fan, too!

At the young age of 58, I was diagnosed with Stage 2b non-smoker's lung cancer in June 2018. The CT scan showed a 2.7 cm cyst in my upper right lobe. Had surgery to remove the lobe. Pathology showed the cyst was 3.0 cm, hence 2b instead of 2a. It also showed the cancer had spread to the nearest lymph node. It also showed the cyst was closer to the cut line than the CT scan had indicated. When they stained that line, it showed the presence of cancer cells. That bought me 33 radiation treatments. Acting out of an abundance of caution, I also got 4 rounds of chemotherapy.

I did go to the City of Hope for a second opinion. My treatments were already underway by then, but they said they would have recommended everything my doctor had done. I do believe I am lucky that my Oncologist is very good. He's one of these young overachievers who has certifications in Hematology, Oncology and Internal Medicine. RN friends of mine who have worked with him say that he is the smartest doctor they have ever met and, if they or anyone in their family ever needed an Oncologist, they would see him.

Some things went smoothly. Some not so much. The surgery was performed with the latest model Da Vinci robot and was a breeze. I was discharged from the hospital 1.5 days after the surgery. My doctor did have me get a port, which I was very happy to do. (A friend's veins were pretty much destroyed by getting her chemo directly in her arm.) My chemo was concurrent with my radiation, which caused the problem. My Neutrophil count was down to 283 18 days after the first round! We stopped radiation and delayed the 2nd round for a week. Everything came back up. Continued to struggle with very low Neutrophil counts after each round of chemo, but didn't have to delay any more chemo treatments. DID halt radiation for another week which did the trick.

I took all the low Neutrophil precautions, even wearing a mask at work. It was close to Halloween, so I told people I was preparing my costume. Some co-workers knew what it really was. Never got sick. Not even the trace of a fever. After it was all done, my doctor speculated that I might have a rare condition where the Neutrophil cells are actually there, just not mixing around in the blood flow. They're more like the wallflowers at a high school dance that just stick near to the wall and don't move out to the middle of the room.

Tomorrow I have my first 3-month CT/PET scan to verify that I am still cancer free. The only "criticism" I have of my doctor is that I wish he had talked more about this lack of physical stamina that I still experience. I'm still sleeping 8 to 8 1/2 hours a night, which is a good hour to an hour and a half more than what used to be fine for me.

I should mention 2 more things. One, after a friend died of lung cancer 5 years ago, I've been raising money for the American Lung Association every year. I am the team captain of "The Lung and the Breathless", a team of people who climb the 1,400 steps of a local skyscraper to raise money. So it's ironic that I contracted lung cancer! Oh yea, at the time I and my siblings knew of no cancer anywhere in our family history. Since then we've learned that our mother's father died of side effects of colon cancer.

The other irony is how we caught this so early. I am the luckiest person to ever be diagnosed with multiple blood clots in both legs and multiple bilateral pulmonary embolisms. Lucky first because my co-worker and friend died of a pulmonary embolism 8 months before my diagnosis. Lucky second because my Hematologist had just switched to 6-month blood testing when the marker he was watching spiked. That led to the biopsy that revealed lung cancer.

As the Grateful Dead say, "What a long strange trip it's been!" Glad to meet everyone. If you have any questions about my experience, or if I can help you with your experience in any way, just let me know.

P.S. I AM training for this year's stair climb. I'm just starting week 4 in the 9-week program. I don't know if my body will let me finish, but I'm trying! I will be a speaker at this year's event, even if my body isn't up for the climb. I'm hopeful because there is no time limit. As long as I finish the climb the same day that I start, I win!

@margot69- Hi!! Isn't the ER a joy? I hate going there but sometimes it's the only alternative. What does your Oncologist say about your chest pain? Is it the cancer? I'm sorry that you aren't feeling better. Chemo is pretty grueling, tiring and chancy. But you are hanging in there and I'm glad! The Granix helps keep your white blood cells from dipping to low.
I found this about the side effects that you might incur from it; https://www.rxlist.com/granix-side-effects-drug-center.htm

I know that you don't want to travel, and that it's even more difficult when you feel ill, but please reconsider this. You have cancer Margot- you can inconvenience your daughter for it. I'm sure that this feeling is only on your side. I don't think that it would be starting all over. Your present dr. will transfer your info and the new dr will go from there. Isn't it worth it? Of course you can chose not to do anything, you do have options. But I know that you don't want to do that, well at least I'm hoping that you don't. Please let me know the results of the PET scan!

@flusshund- Good afternoon and welcome to Mayo Connect. I am a lung cancer volunteer mentor here at Connect. I have had lung cancer on and off for 22 years. I have what is called multifocal adenocarcinoma of the lung. What cell type of cancer do you have? I sympathize with your fatigue. I have had chemo and it's hard to describe to anyone what it feels like. Did your doctor not say anything about your low stamina prior to your lung cancer journey? You are recovering from a lot of chemicals and surgery and radiation. It can take upwards of a year, maybe even a bit more, to feel like yourself again. Rest and sleep when you need it. It sounds as if you have a lot of plans, that's just terrific.
A lot of non-smokers get different types of lung cancers.
Here is my blog, about my lung journey if you care to read it. https://my20yearscancer.com/
How is your breathing? Have you been assigned a pulmonologist?

Will introduce myself. I am a senior woman who has recently been diagnosed with a cancerous nodule in my lower right lung. Am schedule for a VATS lobectomy on 3/6/19. Doctors don't think I'll need chemo, or radiation since the nodule is less than one centimeter and a needle biopsy did not indicate spread to lymph nodes
. Anyway, for that I"m grateful, but find myself bouncing from one emotion to another--times of fear, anxiety, relief that the thing was found so soon, etc. I guess that is normal. Am with a great medical team in my city and trust them. I am really interested in what people have experienced with eh VATS surgery--after the procedure during the hospital stay, recovery at home, and then handling the needed CT scans, PET scans, or whatever to make sure the patient is free of cancer. Don't know what else to say, but I appreciate any and all comments. So glad to have found you.

@a. I'm glad that you found Connect too!lamogal635- Thank you. Your moods will be all over the place for sometime, but I'm glad that you can still work, if you are up to it. Why were you put on effexor? Has it always made you feel lethargic?

Greetings, Merry. Should have mentioned the type. Lung Adenocarcinoma, Stage IIB. PD-L1 strong expression. But . . . Exon 19 EGFR mutated. My doctor did talk about fatigue during treatment, but didn't mention the lingering effects. Or maybe they thought that was implied.
A Pulmonologist was part of the team when I first had my pulmonary embolisms. When my more recent blood level spike and PET scan indicated a biopsy, I made an appointment with my Pulmonologist. He said he'd get back to me in 2 weeks after he had consulted with my surgeon and Oncologist. 3 days later he called and said "Get it done.", so I did. My hospital has a Tumor Board that meets every Friday at lunch and discusses gray area cases like mine originally was. My Oncologist, Pulmonologist and Surgeon are all on that board. My Oncologist is actually the head of that board as well as the Head of Oncology at that hospital. Lung cancer is his specialty.

@flusshund please meet @alamogal635- @@alamogal635 has surgery for lung cancer next week.

@merpreb I am on Fluoxetine ( Prozac) not Effexor. I figured the odds would be wild. Thank you.

@alamogal635- I felt exactly like you did when I was put on it years ago.