Fred G

Hi, Dave,
How did your treatment go? Please post an update when you can. We are here for you!
Lauren
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Digital Community Manager
LUNGevity Foundation

Well Dave - Tuesday has arrived.
Hope all goes well with the radiation starting today, and with your weekly chemo tomorrow.
That is how I started my treatments.   Later I was able to have surgery and then more chemo.
I am still here nearly 20 years later  (diagnosed December 1997).  Keep us posted.
 
Donna G

Well, here we go. Tomorrow starts my first radiation treatment. It'll be five times per week for ten minutes. Chemo will be every Wednesday for 3 hours but only once a week.
Will keep posting to my progress.
Dave (DragonKing)

Dave,
And thank you for being a serving soldier!
Persist. Stay on point. Stay the course. 
Tom

Well, I did have my first radiation treatment last Tuesday. It lasted 10 minutes and was a piece of cake.
Then again Wednesday but then right after I went to chemo. That was different. I got a shot, anti nausea, they said, then there were 2 little bags and 1 large bag and it took 3 hours of sitting in a very cold room. No pain going in.  A few hours after I went home, I started having severe pain in my chest. I do have morphine for that, a slow acting pill I take every 12 hours and fast acting that I can take 4 times a day in addition as needed. And I needed it. My cancer is touching my artery and thorax (I think that's what it's called) and I have a hard time swallowing food or even drinks. I've lost 35 pounds in less than 3 months since this all started.
Okay, then Thursday again my radiation, piece of cake.
Then Friday rolled around, no radiation - it seems the machine went down. So now I have to wait until Tuesday and start the week all over again. So far there's been no changes, nor have they taken any test, so I'll keep posting on that. I'm still positive about the outcome. Just wish it didn't hurt so bad, I had always been told cancer don't hurt, don't believe it, mine hurts like being malled by a few bears. May because of the location of the cancer, haven't been told yet why I have the pain.
Will keep posting, still need to know there are others out there who went through it too. Still scared, but no longer of the treatment, more about the outcome.
Happy Memorial Day to all my Soldier Brothers out there!
DragonKing (Dave)
 

Hey, Dave! You have a few newbies following in your treatment plan and we (I) have made the military travels that you have, so please stay in touch!

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Hello!
Here is an explanation of both types of radiation from LUNGevity's Lung Cancer 101 website:
INTENSITY-MODULATED RADIATION THERAPY (IMRT)
IMRT is an advanced form of 3D therapy. IMRT modifies the radiation by varying the intensity of each radiation beam. This technique allows a precise adjustment of radiation doses to the tissues within the target area, possibly allowing a higher radiation dose to the tumor and keeping more radiation away from nearby normal tissues. Many major hospitals and cancer centers now use IMRT.
THREE-DIMENSIONAL CONFORMAL RADIATION THERAPY (3D-CRT)
3D-CRT uses special computers to precisely map the location of the tumor. Radiation beams are shaped and aimed at the tumor from several directions, which makes them less likely to damage normal tissues.
Here's the link to the page if you'd like to read about other types https://www.lungevity.org/for-patients-caregivers/lung-cancer-101/treatment-options/radiation-therapy
Lauren
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Digital Community Manager
LUNGevity Foundation

Hey, Dave! You have a few newbies following in your treatment plan and we (I) have made the military travels that you have, so please stay in touch!

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Judy,
Thanks for your insight.  Finding the little things that bring me joy are something I look forward to every day.  
I was fortunate to have both my radiation oncologist and medical oncologist in the same practice.  Their offices were closely located and they collaborated on designing and modifying my treatment plan. I recall plan changes both before and after treatment started.  During my 30-day conventional radiation (not sure what they called it 13 years ago), my daily dose time was reduced after my mid-treatment scan; the radiation oncologist said the tumor was shrinking faster than they predicted.  I hope you have a similar experience. 
The SBRT should fry the small guys (it worked for me), and the conventional radiation combined with chemotherapy should deal with the second (apparently larger tumor).  I had absolutely no side effects from SBRT.  The only difficulty was not being able to scratch the itch that always happened 4 minutes into an immobile 15 minute session (Murphy's Law). 
Stay the course.
Tom 

Judy - good news all the way around.  I think I sweat the brain scans more than any other scans.

Glad for the good news! My prayers are with you.

Recent brain scan shows no mets. Port is in place without any problems. Radiologist called and they were able to make a plan to do SBRT on all 3 of my tumors. Which means chemo probably eveey 3 weeks instead of every week. Thankful to hear all that.
Judy M
 
 
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While preparing breakfast for myself yesterday, I had a thought... 
 
The question that triggered the thought was...  why does it have to be so hard to eat healthy?
 
After pondering on the question and figuring out what I would ultimately eat for breakfast, it hit me...  There are a lot of cancer patients, ex-cancer patients, people who have cancer in their family, etc. (millions and millions).  Why isn't the market place doing more to help us eat better.
 
With that in mind, I've decided to tackle this problem.  But, before I dive in to far, I wanted to see if anyone knows of other people/organizations which might also be trying to solve for this?  I work in the Consumer Packaged Goods industry (big fancy words for food) and want to kick off an initiative to challenge the industry (food companies and retailers) to help us eat better. A few thoughts...
 
1) carve out a section in grocery stores for food choices/options approved by notable cancer centers (i.e MD Anderson, etc.)
2) encourage food manufacturers to create/distribute foods that are cancer friendly (preventive, chemo complimentary, etc.)
3) put simple and cost effective ideas/recipes in our hands (mobile app, kiosk, in aisle,etc.)
4) encourage manufactures/retailers to donate product/dollars to help those less fortunate eat healthy (control the controllable)
 
Through and initiative/challenge like this, greater awareness of lung cancer (all cancers) could be achieved.  People are watching less and less commercials on tv these days due to TiVo and the like, however people are still walking the aisle of grocery stores everyday and are a captive audience.
 
Any thoughts?  Any advice?  Any connections (retailers, manufacturers)?  Anyone interested in the endeavor?
 
Thank you,
Marc
 

Since all the path reports aren't back yet and I'm still recovering from surgery he wants to wait a bit. We will meet back in the next couple weeks but we will hear from him again tomorrow. Thank you so much for the prayers.

Hi, I am sorry that you have received this devastating news but do know that being ALK positive means that you likely will have multiple treatment options. Also know that lots of us mutants have outlived predictions. I was diagnosed at the age of 45 in 2005---I am ALK+, have been stage IV for most of my journey, and I just marked 12 years since diagnosis. Check out my blog if you'd like more information about living (for a long time!) with ALK+ lung cancer: www.outlivinglungcancer.com  You are not alone. xoxo Linnea

Lbelle ,

I know this is such a shock . And you and your family are in my prayers. Did the oncologist have a treatment plan ?

Suepm


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Hi, Fred,
Here is the link to the Targeted Therapy section of LUNGevity's Lung Cancer 101 website that Tom mentioned: https://www.lungevity.org/for-patients-caregivers/lung-cancer-101/treatment-options/targeted-therapy
There is a lot of information plus a video on this page that explains diagnostic testing for genetic mutations in tumors. We are here to answer your questions!
Lauren
--
Digital Community Manager
LUNGevity Foundation

Thank you, Lauren! Yes, I totally support what is taking place here on this page, and looking forward to absorbing as much information as possible, as well as adding info when I can.

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Hello Tom,
 
I understood the goals and terms of you and lungevity. My concern was that I know some of the doctors who are serving in the cancer field. So may I recommend their name here?
 
BTW I am happy that you are helping too many people and doing a noble work.

Cancer patients get a unique appreciation and understanding of the medical profession by the very nature of our disease. At the minimum, we interact with our GP, Oncologist or Radiologist, and a brace of medical testing and treatment nurses and technicians. This experience base gives us a lot of insight into the profession. Here is a synthesis of the insight I've accumulated over the years.
Never go to a diagnostic "results revealed" medical consultation alone.
If you don't understand the words the doctor uses, ask them to re-explain without the "medical/techno-speak."
Tell the doctor your special circumstances or medical needs before hospitalization or infusion treatment. Ask these be captured in the admitting orders. Ask to see the admitting orders at admission or before first procedures. Don't get admitted if the order does not cover your special circumstance.
Most procedures can be painless or discomfort can be minimized but you need to ask for relief before the procedure. For example, ask for a lidocaine injection before IV insertion or for Xanax to reduce anxiety during scans. These are examples of special circumstances that should be discussed with the ordering doctor at the time he orders the procedure. Don't be afraid to complain. Be kind at first but if the situation is not resolved to your satisfaction, add anger. Remember, you are paying for all this and you are a customer as well as a patient.
People in the medical profession are like people in any profession. Some are good and some are not so good. The difference is medical professionals have unique authority and special powers that say a consulting engineer or a lawyer will not have. To get prospective on a new medical professional, pay attention to how he or she interacts with the office or clinical staff. They won't treat you any better than the people they work with every day.
The best doctors treat people, not patients. Try and find ways to remind them you are a person. Tell them you are afraid or uncertain, for example, to help them recall they are dealing with a human being. I always find a way to ask if they pray before a procedure.
Most medical professionals, unless also cancer survivors, won't have any idea how or what you are feeling. Tell them before, during and after a procedure.
 
 
 
 
 
 
 
 
 
 
 

​Well said!!
 
I tend to make sure that when I see the doctor before the surgery or procedure I ask them how THEY are feeling/doing!! Did they sleep well? All the kids are doing well? Wife/Hubby is happy? LOL!! It sounds a bit like what you said. At the very least I get a giggle out of them and that is MY way of reminding them that I am a person, parent, spouse, pet owner or whatever else I want them to think of me as when they open me up and I suddenly look like any photo from a text book or slide show.
 
​Always looking for a smile or a giggle!

This is great, Tom! Thanks for the info.

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Hey Tom! I just wanted to let you know that I did not change your name. I have a wonderful phone that takes the liberty to change the spelling WITHOUT ASKING!

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Ringo,
Ok, stage IV adenocarcinoma with ALK markers. You've come to the right place. We are on the internet but are not the internet. I've found the internet sensationalizes our disease, kind of like a newspaper. Who wants to read about successful lung cancer treatment. Doom and gloom sells but not here!
We have lung cancer. We know about treatment, both the upside and downside. We'll tell you unfettered truth, the good and not so good. But most important, we are alive to tell the story. And that is the best "support" we offer. Simply put, if I can live, so can you!  That's your take away from your first encounter with our forum.
Stay the course. 
Tom
 

Hey, Tom! Oh yeah, I did the biopsy dance, along with the PET scan, which I was almost not able to have, because I am a Type 2 Diabetic and my Blood/ Sugar numbers would not stabalize. However, the sugars finally settled down and the PET scan was completed.

With regards to the insurance dilemna, we called our insurance company today, and found that my radiologist filed an appeal on the 9th of May, and it generally takes 15 business days to make a determination, which means that we may not hear anything until May 30th. I will keep ya'll posted on the outcome. Take care of yourself!

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