New Member: Living with Stage 4 Lung Cancer and Advocating for Awareness and Research

I just discovered this community and thought I would introduce myself. My name is Jeff and I was diagnosed in 2014 at age 46 -- I am about to turn 49 and have begun my third year of chemotherapy for my metastatic lung cancer (Adenocarcinoma).

I write about my experience, as well as related info, on my blog at justbadforyou.com/blog and I also advocate for lung cancer research. This coming November I am trying to organize an awareness and fundraising event in Los Angeles in association with the American Cancer Society, the American Lung Association, Huntington Hospital in Pasadena, and possibly the University of Southern California.

My treatment has only been chemo from the start, and I have responded well to Alimta, for which I am very grateful.

11 Replies

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  • Jeff, Welcome! I love your blog, and look forward to reading the entire wellness warrior series. I'm also a blogger, both at this site and at scifiknitter.blogspot.com.

    I also do advocacy work. You are involved with quite a large event, but you have a very large potential participant base in the LA area.

    Congratulations on your outstanding response to Alimta. I met a man at the Hope Summit last year who was on Alimta for six years!

    Anita

  • Thanks for the kind words, Anita. I'm enjoying your blog as well and look forward to reading more from you in the coming days.

    - Jeff

  • Welcome to the board Jeff. I visited your blog and have linked it from my own little web site and you have some great information there that just needs to be seen by more folks.

    I think the best advocates for Cancer Research are those that are battling the beast or who have beat it already. I started raising money while undergoing my second cancer treatment at Johns Hopkins in Baltimore, MD, and have not stopped raising money for more research.

    Just like SciFiKnitter said, congrats on your great response with your treatment. That gives hope to so many when they hear outstanding reports of successful treatment like yours.

    Keep Blogging, and keep posting here!!!!

    Mike "Serrecko" March

    MikesWebSpot.com

    Leader of The Skyline Gaggle of Noobs

    A Fundraising Paintball Team

    - TheSkylineGaggle.com

  • Mike,

    I stumbled across your blog yesterday and was sorry to see that you were stepping back just as I found you, and even more sorry to read on about why. Your recent post on Caring Bridge is very inspirational and you seem like a very strong human being -- I hope that I can take that to heart myself.

    I don't know if you'd be up for it, but I occasionally do Skype interviews for a podcast and as material for a book I am writing to help patients and caregivers. IF you are interested in sharing the story of this phase of your journey and the way you are approaching it, I'd be honored to have the opportunity to chat with you for a brief time on a video call. No pressure, though -- these are private matters for many of us.

    Good luck with the continued work you have -- keep that strength up as you can and enjoy the days ahead to the fullest (embracing anger and all).

    All the best,

    Jeff

  • Welcome Jeff!

    I spent some time on your blog and will be checking in often as you have done some very in depth research. Thank you for your time and effort. I found your posts regarding The Truth About Cancer "documentary" extremely interesting. Having been a Licensed Massage Therapist for 26 years, most people expected me to go the alternative route to deal with my stage 4 lung cancer diagnosis. I did my own research as well and chose chemo after mutation testing didn't show high hopes for targeted treatment. 4 rounds of Carbo/Alimta and now on maintenance Alimta and my most recent PET showed regression of metastasis in pleura and lymph nodes. Primary tumor has shrunk somewhat with SUV uptake half of what it was 6 months ago. Brain MRI was yesterday to check that there are still no mets. Do I wish there was an easier way...YES, don't we all. Glad you are on this board and I look forward to hearing more. Best of luck with your advocacy and fund raising event in CA.

  • Thanks, Peg -- so, you're doing the same basic protocol I did when I began, though I think I did six rounds of Carboplatin and Alimta before switching to the Alimta alone. It's been a great drug for me, and I'm still fairly stable after a touch over two years on it. Here's to your continued success (and wise choices)!

  • Hi Jeff. I was diagnosed in April 2015 (age 44) with nsclc. Like you (and PegD) I had as many rounds of carbo-pem as my oncologist would allow (5, if memory serves) and have been on Alimta since then. Chest and abdomen are now stable, and I'll have MRI again next month to check brain (unfortunately had craniotomy and srs to deal with mets there in may 2016). Advocacy and fundraising for research are so important to me personally..for now I'm just trying to stay stable until research can find even better treatments. I'm climbing the Fightforair climb with American lung association this weekend in Kansas City and am glad I'll be interviewed by local tv to try to continue to get the word out and support research. I look forward to checking out your blog

    Jennifer

  • Jennifer,

    How great that you are sharing your story on television and able to spread the word. I'm making slow progress on organizing a walk in the Los Angeles area for next November -- our particular flavor of cancer is often overlooked in the media, but this is the time when a huge push really can make a difference with all the new prospects in the pipeline. All the advances in recent years give me a lot of hope that we will see effective cures for many more people sooner rather than later.

    Best,

    Jeff

  • Jeff what you wrote is very interesting would like to here more .From you an it wasn't .wouldd read more of the others you have written. I have stage three adenocarcinoma in lympnodes. they removed the upper part of left lobe. wouldn't do radiation.Did chemo for six months I am cancer free going on my fourth year my oncologistsaid it wasn't him that cured me .H e said it was god.A miracle the chemo he says no. would like to here from you and your journey. Jo Taylor

  • Thanks you, Jo -- I'm glad to hear of your success with the surgery and chemo. It is amazing what can be done these days. All the best!

  • same to you,Jo

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