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Hi all- I’m Diane. I was dx Jan 2021 with NSCLC EGFR Exon 21. Mets to spine, sacrum, femur, hips, adrenal gland, lymph node, liver, and 1 brain met. I was blindsided as most are I suppose. It was a rough 5 months coming to terms with this. I’m learning about this nasty disease which I find to be terrifying most days, however, I’m starting to have more hopeful days. Reading this forum silently over these months has be tremendously helpful. Thank you all you wonderful warriors. 

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Hi, D, and welcome! Glad you've come out of "lurk mode"--this is, as you've seen, a great group and you'll find a lot of information and support here (and, believe it or not, a few laughs along the way). What kind of treatment(s) have you had and how are you doing now? I'm glad to hear you're adjusting and feeling more hopeful. There can be a lot of ups and downs along the way, even for long-term survivors. Few get there without a few detours here and there.

Glad to have you aboard.

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Diane,

Welcome to our forum.  We're glad you found us, but sorry that you need to be here.  You sure have had a tough row to hoe and I'm glad that you are feeling stronger.  The news hits all of us as a "ton of bricks".  Along with all the myriad of emotions we feel; the uncertainty can be the most troubling.  Please update us, if you choose, on your treatment and progress.  There are many here who are long-term survivors and have varied and meaningful experiences to share.  Ask any questions you want and you'll find great responses coming from personal experiences.

In the meantime, the more we get to know about you the more we can support you and point you in the right direction for resources that can be ;of help to you.  Our only caution is stay away from Dr. Google.  Online survival stats are running 5-year averages and do not reflect the present state of treatment and outcomes.  There are folks here originally dx'd at Stage 3 who went to Stage 4 and 17 years later are still here to share the wealth of their knowledge.  So stay strong and focused on things that build you up right now and we look forward to hearing more from you.

Lou

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Hi Diane, glad you have posted. I didn't find this site until well after chemo and radiation and certainly wish I had known about it earlier. 

I assume you've started Tagrisso (or another TKI) and maybe had some radiation. My mutation is EGFR Exon 19 and I've been on Tagrisso since March 2020 and am healthy again. I hope your side effects aren't too bad. 

There are a few private Facebook LUNGevity groups that you might be interested in. I have learned so much from these groups, but just know that it can sometimes be difficult to read about progression, which can inevitably happen. 

Tagrisso (osimertinib) Patients & Caregivers Group 

EGFR Resisters Lung Cancer Patient Group

LUNGevity Targeted Therapies Group (this includes first and second generation TKI drugs as well as Tagrisso) 

LUNGevity EGFR Group 

Any questions, ask away on any of these forums. 

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3 hours ago, LexieCat said:

Hi, D, and welcome! Glad you've come out of "lurk mode"--this is, as you've seen, a great group and you'll find a lot of information and support here (and, believe it or not, a few laughs along the way). What kind of treatment(s) have you had and how are you doing now? I'm glad to hear you're adjusting and feeling more hopeful. There can be a lot of ups and downs along the way, even for long-term survivors. Few get there without a few detours here and there.

Glad1 to have you aboard.

Hi Lexie! Thank you!  After my biopsy I did 1 treatment of chemo, then my biomarker came back as EGFR exon 21 and was put on Tagrisso. I have had Gamma Knife to brain met, 10 days of radiation to each sacrum and femur. Tagrisso was working well until I had my last Zometa infusion and my second dose of Moderna vaccine in the same week. My ATL and AST spiked, Onc took me off Tag and Eliquis for the past 2 weeks. Numbers are coming down but still waiting to hear if I can start back on Tagrisso. He mentioned I might need to go back to chemo while my liver gets better. I'm just wondering what numbers I need to get back on Tag?  I'm wondering how the vaccine has effected others who have had both doses? I have heard form a few who did also have a spike in their liver counts but who knows?

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2 hours ago, LouT said:

Diane,

Welcome to our forum.  We're glad you found us, but sorry that you need to be here.  You sure have had a tough row to hoe and I'm glad that you are feeling stronger.  The news hits all of us as a "ton of bricks" along with all the myriad of emotions we feel the uncertainty can be the most troubling.  Please update us, if you choose, on your treatment and progress.  There are many here who are long-term survivors and have varied and meaningful experiences to share.  Ask any questions you want and you'll find great responses coming from personal experiences.

In the meantime, the more we get to know about you the more we can support you and point you in the right direction for resources that can be ;of help to you.  Our only caution is stay away from Dr. Google.  Online survival stats are running 5-year averages and do not reflect the present state of treatment and outcomes.  There are folks here originally dx'd at Stage 3 who went to Stage 4 and 17 years later are still here to share the wealth of their knowledge.  So stay strong and focused on things that built you up right now and we look forward to hearing more from you.

Lou

Thank you Lou! Yes, Dr Google and his evil PA Facebook can really send you into a tailspin. 

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I am reading Jane McLelland's book How to Starve Cancer. Is anyone using the COC protocol? 

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Diane, 

I am not on a special diet, but some here are very healthy in their eating and will likely know more about that than me.  I do try to eat healthy, but the occasional BBQ or burger is more temptation than I can stand.  😊

Lou

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33 minutes ago, DMiller said:

I am reading Jane McLelland's book How to Starve Cancer. Is anyone using the COC protocol? 

Here's a recent post from Rower Michelle on that particular book: https://forums.lungevity.org/topic/44842-durvalumab/?do=findComment&comment=441536

I think an overall healthy diet is always important when dealing with any serious disease, but I'm highly skeptical of claims that particular diets do much in the way of affecting the outcome.

 

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9 minutes ago, LexieCat said:

Here's a recent post from Rower Michelle on that particular book: https://forums.lungevity.org/topic/44842-durvalumab/?do=findComment&comment=441536

I think an overall healthy diet is always important when dealing with any serious disease, but I'm highly skeptical of claims that particular diets do much in the way of affecting the outcome.

 

Thank you Lexie!

 

 

9 minutes ago, LexieCat said:

Here's a recent post from Rower Michelle on that particular book: https://forums.lungevity.org/topic/44842-durvalumab/?do=findComment&comment=441536

I think an overall healthy diet is always important when dealing with any serious disease, but I'm highly skeptical of claims that particular diets do much in the way of affecting the outcome.

 

 

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34 minutes ago, LouT said:

Diane, 

I am not on a special diet, but some here are very healthy in their eating and will likely know more about that than me.  I do try to eat healthy, but the occasional BBQ or burger is more temptation than I can stand.  😊

Lou

That's my problem as well. I love a good burger!

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Diane, I have heard of some people who had to come off Tagrisso to let liver enzymes normalize and then resume with better results. Or try a 40 mg dose instead of 80. I don't know what the optimal liver numbers your doctor would be looking for. I think chemo in the meantime isn't a bad idea. 

Personally I don't follow any special diet, although I try to avoid sugar to keep my A1C level in the normal range. I use monkfruit in lieu of sugar for all my home baking. And I've become a fan of Impossible and Beyond "meats" so I can indulge in burgers and sausage without guilt. 

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Diane,

Welcome here. Glad you moved from lurker to active participant.

So many have shared superb advice and information, I've little to add. Save this; I was diagnosed in February 2004 and experienced every form of lung cancer treatment but immunotherapy. If I can live, so can you.

Stay the course.

Tom

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Hi Diane and welcome! I haven't much to add to what the Lungevity gang already told you. My NSCLC was stage 1a, so I didn't need anything beyond surgery and surveillance. I had 2 unrelated cancers, one of which was stage 3 and very aggressive, so I have some experience with chemo and radiation. I had a "dismal prognosis" on that one, but I'm almost 10 years out  and NED (no evidence of disease) since my treatment.  It goes to show that  oncologists' opinions ( and ones from Dr Google) are sometimes incorrect. Hang in there!

Bridget O

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