Hello, my survivor friends. My latest CT scan showed a RUL nodule that has increased in size from 6 mm to 8 mm since three months ago. Also the subcarinal lymph node(s) increased in size from 1.6 cm to 2.7 cm in the same time period. They will be attempting a needle biopsy of the nodule next week.
I am anticipating the strong possibility of chemotherapy in my near future. I ask for your advice on what questions to ask and generally what to expect. I will relay the results of the biopsy analysis once I have it. I am getting my medical care at the VA hospital in Tampa. Once I get the biopsy results, I intent to go to the Moffitt center for their second opinion.
My LLL lobectomy in March, 2017 left me feeling pretty good as I then had NED. This apparent setback has me worried. I may be going into a new scenario as I deal with a new reality. I welcome your comments.
Thanks,
Rick
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Well crap! Sorry to read this. I’m glad they had moved you up to three month CTs then. Which means that, if this is cancerous, they caught it early.
With your exposure to agent orange, tobacco and who knows what all, there’s a strong possibility that you will have a large tumor burden. And by that I mean there may be multiple mutations within your cancer, which would make you a good candidate for immunotherapy.
They will be checking your tumor for a variety of mutations as well as the PDL-1. Treatment will likely be a combination of chemotherapy and immunotherapy. You should also inquire about radiation.
Until you have the biopsy there will be more questions than answers. Do ask what mutations they are testing for and ask about stereotactic radiation.
Thank you, Denzie. I anticipate asking many questions in the near future. Hopefully I'll get some meaningful answers. I will be scouring the internet for all the latest info.
First, thank you for your service. One of the great injustices of lung cancer (and research funding disparity!) is the disproportionate incidence in military personnel. So, thank you, and I’m so sorry. I echo Denzie’s reply; it is so rare to have caught this early the first time and caught the potential recurrence soon. The needle biopsy will be critical in determining a course of treatment. Immunotherapy combined with chemotherapy is the first-line treatment for many NSCLC patients, and new therapy for small-cell lung cancer was approved within the last year or two. I am still on my “first line” since April 2015; a friend of mine diagnosed in May (also stage IV and without any mutations that can be treated with targeted therapies) is receiving immunotherapy plus chemotherapy—a treatment now proven and available for most NSCLC.
One question I suggest you discuss is the appropriateness of CTscan of abdomen and pelvis in addition to chest (some use PETscan) and MRI of brain to make sure no metastases are hiding there.
Best wishes to you as you tackle whatever comes next,
So sorry to hear this Rick. There are more options out there than when I was diagnosed with stage 4 in 2013. I had chemo and two targeted drugs and I have been NED for three years now. My husband is also a Vietnam vet. He had a soft tissue sarcoma attached to a kidney in1993 which meant they had to remove the kidney. Just this week we found out he has lung cancer. He had the biopsy done Tuesday so we don’t know stage or which kind yet. The waiting is necessary but nerve racking. I am glad he will have the same oncologist I had. You guys have suffered too much due to Agent Orange. Wish you well.
I am so sorry that you are going through this. My first suggestion is to go to Moffitt rather than the VA if possible. They are one of the best cancer centers and may have more preventive options. I am
On chemo right now and it is going ok. I am only sick the first 5 days or so. It seems to be a long day every 21 days and then rest. I am on cisplatin and Alimta and it is better than I expected. Hopefully they also have other options for you. We are all here together and I wish you the best of luck.
Yes, the Moffitt center is one of the best. They actually loan some of their fellows to the Tampa VA hospital part time. Also USF coordinates with the VA hospital. My medical care at the Tampa VA has been great.
I am taking notes on the different chemo drugs you and others here are receiving.
I also am a Vietnam vet with nsclc, age 70, and get 100 % of my care from the Minneapolis VA. I didn't bother with second opinions. It probably just confounds the care and slows things down. My care has been excellent and I wouldn't trade my care team for the Mayo Clinic . As a matter of fact my brother was diagnosed with pancreatic cancer about 5 weeks ago and was "treated" at Mayo Clinic in Rochester, Mn. I just came back from his funeral. It seemed to me they dragged their feet and gave him poor advice about controlling his exposure to germs. He died from infection following chemo, not the cancer. Of course pancreatic cancer is a much worse cancer but still he didn't have his first (and last chemo) for a month following diagnosis.
I guess what I could tell you about chemo is they are not kidding when they say stay away from germs. I didn't go out in public, have visitors, or go shopping to avoid exposure to germs. When I went in for treatment I wore a germ mask. Don't know what happened in my brother's case but he elected to travel 4.5 hours 1 way to go to Mayo when he could have gone to his local clinic where he lived in Green Bay. My opinion is that the travel and delay in treatment did him in. My initial prognosis was that I might live 9 months, but it is close to 2 years now survival. Within a week of diagnosis I was having both radiation to my head and started chemo on the last day of my radiation also. In other words nothing was delayed due to having multiple clinics involved. The first chemo was a little rough so if you have problems eating or whatnot get back to me.
By the way be sure to check in with your local Disabled American Veterans to see if you qualify for disability benefits. And good luck !
First let me say thank you for your service. (I hope it's okay to say that, from what I've heard, some vets would rather we didn't say it).
I am so sorry that you are going through this. You will want to know the type and stage as well as treatment options. Ask about a ct scan from neck to pelvis, and an mri of your brain. Definitely go for a second opinion if at all possible.
Again, I am very sorry that you are going through this again.
Thank you for your service! It means the world to so many of us!!
I agree with Denzie. As you may already know, she is on top of so much.
A second opinion with Moffit is an excellent choice. The VA centers can be excellent depending on which one you are at. Unfortunately the one near me is not a good choice, but that is not true elsewhere!
Also, doing all the research you can so you are armed with questions is a good approach. I wrote down all the questions so that nothing was left out. I also brought a friend with me and often recorded the meetings so that information could be reviewed after the appointments. Be careful with research - you may already be very good at it, and things are changing so fast that it is critical that we be our own advocates - just don't let some of the information be spooky - outcomes from even 6 months ago are not the same.
You are blessed to have caught things early. While it is difficult to do, please be patient and keep yourself busy while you are waiting for the results.
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