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Welcome Armed Forces Veterans of the United States


Tom Galli

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US Armed Forces Veterans, welcome here!

I'm a veteran of 21 years on active duty in the US Army, a lung cancer survivor, and a Lung Cancer Support Community (LCSC) Forum Moderator. I'm proud to declare our support community is now open to veterans and those that support veterans in treatment.  I'll be your host but our entire LUNGevity community and Foundation is also on board. Together our expertise in all things lung cancer is wide and deep.

How does this work? Most start by reading information on various forums, and you are most welcome to read in. If you want to contribute or ask questions, you'll need to register for our community. It is a simple process and details are here. Once registered, you'll be able to post on forums. You can choose any forum for your first post.  Most choose Introduce Yourself . You can make your first post in that section or here in the Veterans Forum. We'll find you.

I suggest you tell us details about your diagnosis and about your treatment plan. Revealing this information allows us to muster responses from folks who have your type and stage of lung cancer. Unfortunately, lung cancer treatment is complicated and treatment and side effects vary with the type and stage of diagnosed lung cancer. This is also the place for questions about treatment in the VA Healthcare System. We'll help with that difficult process and have tips and tricks to available to assist. 

Most importantly, this forum's fundamental purpose is to demonstrate that you are not alone in this battle.  We are still in the fight! Once again, welcome to LCSC!

Stay the course.

Tom

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Tom,

thanks for setting this up. I’m currently a post tagrisso patient. I miss the good old days of one pill treatments, but still lucky to have amazing docs looking after me. I’ve avoided seeking anything va related for my treatment, but I’m out there as much as I can be to bring awareness to the disease. 
 

ron 

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Ron,

Welcome aboard!

I’m glad you have amazing docs. By “post tagrosso”, I assume you mean you are in conventional chemo. Is so, what are you receiving? And, if in treatment, might you report on your side effects? 

Stay the course. 

Tom

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Thanks, Tom. Just a little more about me, I was a medic in the army. Had trips to OEF 06/07 and 07/08. Still miss the people since I got out in ‘09. 
 

Unfortunately, I never share exactly what I’m on, when I’m on it publicly. I know on a board like this it will make me sound like a douche, but I have my reasons. I‘m doing a chemo/immunotherapy combo, and have dropped to maintenance now. I got all the usual chemo side effects like nausea, fatigue, hair loss, but for me, the worst by far is joint pain. It has decided to focus on my neck and back, and ranges from uncomfortable, to blinding pain if I cough. Luckily as a lung cancer patient we don’t cough that much... oh wait 😂 

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Ron,

Understand your reluctance. My principal side effects from Taxol and Carboplatin (18 infusions) were (are) joint pain and muscle cramps. About 3 days from each infusion, the joint pain would set in and for about 2 days, it was disabling. Nothing resolved it and it indeed was blinding. Now the only joints that hurt are in my feet (toes and heal) but I'm told these are likely from Taxol and commonly called "Taxol Toes", a common complaint. This pain is now constant at about 3.5 to 4 and I live with it. I do sleep with oversize leather-soled moccasins at night to keep the weight of the covers off my toes. My wife rubs lidocaine ointment on my feet when things get really uncomfortable and that really doesn't resolve pain but sometimes allows me to sleep. Managing sleep is my biggest challenge.

Muscle cramps are the result of chronically low magnesium, again from my chemotherapy. I take 1,000 mg of magnesium supplement (oncologist ordered) that reduces cramps but plays havoc with my digestive system.

I was an Army engineer and really enjoyed my career.

Stay the course.

Tom

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  • 6 months later...

I am a Viet Nam era Navy veteran and had my LC first detected by the VA during a lung nodule serial CT scan. I elected to receive my care outside of the VA through the Mission Act (formerly Veterans Choice). I haven't experienced any difficulties in getting care so far, and have used the program before for kidney stones and an abdominal aortic aneurysm open repair. There were some issues in regards to getting the providers paid, although it was finally resolved after the POTUS opened the White House Hotline.

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Jack,

Welcome here. 

I assume you are doing well.  Opening up the White House Hotline really fixed the Mission Act foot dragging by the VA. What were your treatments if you are comfortable letting us know?

Stay the course.

Tom

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Thank's Tom. I am more than willing to share my experiences with you great folks. Thank you for the opportunity, and thank you for being here to help. I was diagnosed with SCLC after an axial lymph node was removed and biopsied. There was some question as to it's origin, but after sending it to Johns Hopkins in Baltimore for additional examination and a second opinion, it came back as being a probable met from an 8mm lung nodule. A PET scan limited the cancer to some lymph nodes on the left side of my arm pit and the nodule on the right lung apex. Apparently it traveled across my chest  to the other side, which they say is rare but happens. One of the Pathologists commented that they saw a cell actually  "crawl" across a nerve in the specimen  during the biopsy slide preparations! I had no idea that could happen, as I thought our cells travelled about the body by way of lymph fluid or blood. But, now,  in retrospect, our cells do have to have the mobility to do their jobs, and must be able to crawl about tissue and interstitial spaces, etc. So, other than grossing me out after I first heard that, I feel a bit better about that part anyway. lol

Since the scan didn't reveal any thing else from the base of the skull to mid thigh, an MRI of the brain was done, with and without contrast. The brain, fortunately, is clear. After that, a PDL-1 revealed a 20% score for immunotherapy. The VA Oncologist I consulted with sugested I ask my civilan Oncologist to have a Foundation 1 Panel of Genes run to determine if there were any targets for therapy. The VA Oncologist got me approved to go outside the VA for treatment and my local Oncologist ordered the panel. We are waiting for the results before starting treatment. Monday will be two weeks since it was sent off. At this time, my Oncologist is not going to administer any chemo.  I am looking at Keytruda every three weeks and maybe a target drug or two depending on the panel results. At least that's my understanding.

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Jack,

You are an early find SCLC survivor and there are few in this category. Also as limited stage diagnosis, surgery was available and this is the best treatment for any type of lung cancer. But recurrence is always a concern so you need to have a regular systems of scans. I hope your doctors have coordinated this schedule.

Your VA Choice (Mission Act) treatment is a great success story as is the cooperation between VA and civilian docs.  Both are unusual in my experience with the VA. I think establishment of the White House Hotline for veterans health care is something few know about. It definitely has had an impact on improving treatment, cutting through bureaucracy and improving outcomes. Which VA hospital are you using and how would you evaluate it? Where are you on the VA hospital treatment eligibility ladder?

Pass the word about this site to any vets you encounter and....

Stay the course.

Tom

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Thanks Tom. The thoracic surgeon was going to remove the lung nodule by VATS, but the lymph node turning up malignant and as a met ended that. One thing I have learned though, that might be of value in dealing with the VA Mission Act, is that the Community Care department normally takes thirty days to process a request to see an outside provider unless it is expressly requested to be expedited by ones PCP or VA specialist. Of course the provider must be on their approved list or willing to be added to it.

I also learned that one must never give the outside provider their private insurance or Medicare because if they file that, then all sorts of problems will show up. Follow the instructions in the VA authorization to the letter. And our copy of that authorization is not the same as the one that  they give the provider. Our copy lacks the information needed to file for reimbursement.

I will indeed pass this site on to those in need as I meet them. Thanks again, and I am planning on staying the course.

 

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