Curt

Thanks @Curt  Ok, we're under a winter storm watch here in KC (REALLY??).  Don't like to go outside when it's under forty! Snow tomorrow. YUCK. 
Anyway, I tracked downed the research summary from one of Saturday's presenters, Dr Zhang, from the University of Iowa (not the Dr. Wall of Shame Dude).  Here is the outcome on the AE and IO published in October, 2019.  
https://www.cancertherapyadvisor.com/home/news/conference-coverage/iaslc-north-america/iaslc-north-america-2019/gut-microbiome-lung-cancer-risk-immunotherapy-treatment/
Here is the link about this from MD Anderson that was also discussed: 
https://www.cancertodaymag.org/Pages/cancer-talk/October-11-The-Week-in-Cancer-News.aspx
I was taking one of those OTC pre and probiotics and the first thing my Integrative Medicine Doctor at the University of Iowa did was tell me to discontinue, even though I take take targeted therapy. 
I tried the DIY keifer it was just too gross for me so I buy mine to make chia pudding.  Here's the recipe: 
1 Cup Keifer 
1/4 cup chia seeds
1 tsp of cinnamon
1 tsp of maple syrup 
You can add things like a table spoon of oats, barley, rye or blueberries 
Place in a jar, shake it up and viola two to three hours later you've got "pudding".  
Chow! 
 

Hello to The Durva Club-
I wanted to pass this information along to you-
On Saturday I was invited to speak to a group of medical professionals as part of a Continuing Education/Lung Cancer Awareness event.  I crashed the CEU program in search of new information. As a side note it’s amazing what the keynote speaker (from one of the big famous comprehensive cancer centers) had to say in the opening remarks.  “Lung Cancer is bad, really bad “ Obviously he didn’t know there was a patient lurking around in the audience.  He wasn’t a positive see the bright side of life type of Doctor. Shame on him!!
Anyway, a Durva study is about to be published about the efficacy of this IO and a direct correlation was discovered between the health and diversity of the gut microbiome and adverse events (any of the itis’s).   It was reported that many well advertised over the counter pre and probiotics had an adverse impact on the gut microbiome.  Too much of “good thing” is bad for you. 
 
those patients with a healthy diverse gut microbiome (measured in stool samples) had a very low incidence of adverse events, greater efficacy and ability to tolerate the full course of Durva.  

In my opening remarks I did call out this doctor and told him there are many brave survivors who have learned to live with lung cancer beating the odds every day. 
 
You guys inspire me! 
Michelle
 

I'm not sure if you will see this, but i just stumbled across this message board. you all have such kind words to say about my mom. Here we are 15 years later and i love that i can still find stuff from time to time about her on the internet.  I remember her often talking about her message board friends and chat friends, how they helped her feel better when she was feeling sick and hopeless (which she hid very well). Thank you all for being so supportive to her and offering such kind words. 
Randa Ginsky

Tomm,
Thank you for your encouragement and if I may I would like to convey here what my Onc has told me today right before I got #7
He told me that he just got back from a big Oncologists pow wow and has a friend/colleague on the Pacific Coast trials teamand  that he was able to discuss a few "things" with, concerning Durvalumab, and actually Durvalumab was the subject of the convention talks. Now, The Pacific coast trials is the testing they done to gain FDA approval in Feb. of 2018 for Imfinzi, and it is still ongoing. The reason it is still ongoing is because patients are benifitting far greater and longer than stage one and two of the testing had originally suggested. Side effects are still prevalent but managing them while staying on the Durva for the whole year is KEY. The way the drug is working in my case has been that the Durva seems to "choose" one side effect at a time to really clamp down on while doing it's job on the dIseased tissue it is targeting, sort of a "side dish" if you will. The first side dish it chose was not exceptable for me because it caused a lot of pain so we backed off and took Prednisone for a week and that side dish went away and hasn't returned, thank God and knock on wood too.. Then we got back on the regimen quickly and the antibodies have chosen another "side dish" to enjoy while it has it's main meal of the tumor. For me that is the post fight Rocky Balboa look that includes a little swelling in the facial region, stuffy head and yes weight gain all the while still having staggering fatigue. I had been going through this for a month and a half and needed relief so we started Prednisone again for 4 days to see if it would help and it did. Then again back on the treaments a week later. So my theory was, since I can live with this particular side effect as long as there is no pain, no apparent permanent damage, and I can get relief at some point in time, then quickly get right back on the Durva, COOL WITH ME!   THEN my Onc said that his friend ( The one on the Pacific coast trial team) told him that he was actually prescribing Prednisone in lower dosages 5, 10 mg once a day for longer periods of time to deal with the side effects that were more "tolerable and not serious" in an ongoing manner ,and this seems to actually confirm my theory and provides a way to keep the durva "side dishing" on this particular side effect as opposed to a different , new found, and more serious one while doing it's thang on the tumor. So now I am on 10 mg. prednisone once daily until further notice all the while staying on the treatments. Whats more is there is evidence that the Prednisone does not stop the effectiveness of the Durvalumab in my case and others. so we will  see. Just stay on the Durva for the whole year that seemed to be the most important thing my Onc told me and manage the tolerable side effects with your Onc. When my Onc sent me to the infusion room after our discussion, he sat down in the treatment room and started typing profusely about our plan and discussion and I felt like a TRUE PIONEER because what we came up with just may also help someone else and he was typing like he thought so too, how cool is that? This gives me hope beyond description, WHAT A RUSH!......... Charles out...

Katum I can’t offer any personal input on your questions.  Others may be able to.  I can tell you that cancer is an up and down battle.   There will be times when things are going well and there will be others, like now, where it feels like everything is going wrong.  That pendulum can swing very far in each direction pretty quickly.  I don’t have any words of wisdom on how to manage that.  Just know that we all go through it with this disease.  I’m hoping things improve for your mom soon. 

Thanks for the support. I honestly can’t complain. Others are far worse off than I am. My minor issues are temporary. I’m thankful I wake up, can breathe, have a job to go to because lord knows I gotta have a place to go every day to keep me sane. Now to figure out how to get a beach trip squeezed in somewhere. 🏖

Hi Marie-
I am an ALK mutant taking an inhibitor drug very similar to Tagrisso.  We all learn to live with the uncertainty of what to do when our magic pills stop working which can be YEARS from today.  So for now I live life everyday, laugh and try to do at least one fun thing each day.   While I’m no longer working, my life as a continuous learner continues.  I’m into tai chi ( but not very good at it yet so who cares? )  and learning this whole Food as Medicine thing in the hopes of increasing the length of the inhibitor ride.
Ask your onc what the Plan B is if it gives you some peace of mind. (sometimes EGFRs go onto a chemo cocktail successfully) like Carbo/Taxol.  My onc gave me Plan B & C with the hope in another year or two there’s going to be a next gen inhibitor around  
With all the EGFR research ongoing, clinical trial participation is a strong possibility.  I’d like to think that when the time comes, there will likely be a new & better treatment even possibly a cure on the horizon. 
Try not to let the black cloud take up too much space.   
You might find some more specific answers on the EGFR Facebook page.
Michelle
 

I talked with a rep at the Bonnie J. Addario Lung Cancer Foundation on Tuesday, I'm the 1st BRAF V600E patient she has encountered. She is going to do some research for me on this mutation and possible trialsb she gave me the name of someone at Penn Medicine who is familiar with and has treated patients this mutation. She also gave me the name of a nurse navigator I can use. Where I'm currently going does not use nurse navigators & I've felt like I just get pushed from one doctor to the next and have no one person to help guide me along. I'm actually looking forward to my 2nd opinion appointment on Friday. If anyone out there reading this has the BRAF V600E mutation, I'd like to hear from you & learn of your treatment experiences. 
Thanks! 
 

Tomm
3b here, chemo and radiation knocked a lot of the stuffing out of my tumor as it has shrunk considerably but cannot claim remission at this time. As of 1st initial CT and PET's, no new metastasis with uptake 19 less than first PET. Have had 5th infusion of Durva today and so far, no new side effects. Side effects so far have been fatigue, vision a little blurry at times (very little) and minor twinges here and there with inflammation and cough that comes and goes with the help of Ibuprofen and generic mucinex. I did have to visit the E.R. and take prednisone a week after the 2nd infusion because of a nagging pain in the liver area and under the right arm but turned out to be inflammation so the prednisone took care of it without having to take it enough to taper off. Very glad to hear your remission story and pray I will be able to stake my claim in that department very soon, and no hair loss here either.

Hello Opal- Fellow Jersey Girl here.  Exit 150.  
Yes a MRI can show cancer on your spine.  
Totally understand your situation.  I’m really hoping  you have a mutation.  If that’s the case you might not need radiation- I had spinal Mets at the time of my diagnosis.  I was too numb to be terrified.  The onc said he wasn’t worried about it so I didn’t dare go to Dr Google. The targeted treatment knocked out the cancer in a few weeks.  No radiation required.  The MRI showed the cancer on the spine is gonzo.  
Stay Jersey Strong
Michelle 

Katum31 welcome and I don’t have anything to add other than I love your attitude and drive for answers. 
 I’m like Lexi I want control but my kids have been my backup. They’re just has involved in all steps of my treatment and health. 
Continue to let her know how strong she is. 
Take Care
Paula

@Steff thank you so much for sharing your knowledge, as well as your experiences and your mom’s story. I look forward to reading it, and I appreciate you sharing so much detail to help inform others. Knowing other people’s personal stories/side effects makes understanding a little easier. 
@LexieCat thank you so much for your response and I promise I don’t take any offense to it! I completely understand what you mean, and I would never want my mom to feel like she can’t make her own decisions. She’s extremely proactive in her diagnoses/treatment plan right now, and I would honestly be worried if she weren’t (I get my need to be in control of things from her lol). She actually might know more about her diagnoses than I do right now, and I actually expect she will eventually stumble upon this community haha. I just never want to her feel overwhelmed or stressed with which options are out there, what to do, etc. Stress won’t help, so whatever I have to do to take any burden off of her, that’s my job, and I will gladly do it. I told her that we’re all on the same team, it’s just she has unfortunately been chosen to be the star player; but, the rest of us will be making a lot of assists along the way. 
@Susan CornettI’m actually from Louisiana (which is where mom lives), but I’ve lived in downtown Houston for the last few years. I just never thought about lung cancer being found accidentally until all of this started. You always think it starts with a cough/breathing issues. I’m definitely trying to ignore the statistics. None of the MDs have given her a “prognosis” and honestly we aren’t really interested in hearing it. She says she wants to be someone that helps in increasing the current statistics, and I believe she will!

Hello.  I am sorry to hear about your mom’s diagnosis.  Lung cancer is a disease that grows quietly and is often discovered because of symptoms unrelated to the lungs.  It is usually a huge shock.  I am also a “mutant” with a Stage 1 NSCLC Adenocarcinoma with an EGFR Exon 19 deletion.   Like Lexi mine was caught early enough and was able to be treated with surgery.  I won’t have any follow up treatment.  The EGFR exon 20 mutation is one of the rarer mutations.   I do believe that the current TKI treatments, which Tagrisso is one, have been found to be ineffective with the exon 20 mutation.  I do believe there is a new TKI drug being developed called TAS6417.  This is all information you should consult with your doctor on.  Like Michelle said, research and treatments are moving quickly.  I found this link on TAS6417  https://www.biospace.com/article/releases/taiho-pharmaceutical-and-cullinan-oncology-establish-collaboration-to-develop-tas6417-novel-egfr-tyrosine-kinase-inhibitor/
I’m glad you found this site (but sorry you had to), check back with questions and updates when you need to.

Hi Katum and welcome. Not sure what part of H-Town you are in - I'm originally from Friendswood. Your mom's story is so similar to many others. One of my high school classmates called me in January with a similar story. She had hip pain that wouldn't stop; docs finally found a tumor and discovered it was lung cancer. She had radiation for the hip and is on an oral chemo for the primary. 
Steff nailed it - lung cancer is just not the death sentence it once was. We've seen so many new treatments and it gives me hope. I'd like to see us get to the point of being able to treat this as a chronic disease. I strongly suggest ignoring the statistics - they just don't reflect where we are today. Stay informed and stay positive - that's the best way to move forward. We're all here for you and your mom. 

Well then, knowing your mom's specific treatment plan helps me to share more of my mom's story with you as it will be relevant...
Pembrolizumab is another name for Keytruda - an immunotherapy.  Standard care for folks without mutations with NSCLC adenocarcinoma often includes chemo + Keytruda.  My mom did not have any mutations, but her PD-L1 expression is in the high 90%'s, so it made her a good fit for Keytruda.  So her treatment plan included 2 kinds of chemo (Carboplatin + Alimta) and Keytruda.  She did 6 sessions of chemo + Keytruda and then went on to Keytruda alone for about 6 months.  I imagine your mom's different chemo cocktail is due to her EGFR gene mutation and an Exon 20 insertion.  
My mom's lung cancer responded to the treatment with total obliteration.  She has had no evidence of active disease for quite some time and felt immediate relief from the treatment (her cancer was on the back of her trachea and she had to have a stent to keep her trachea open, the stent was removed within a few months of beginning treatment because the tumor had shrunken so much).  Chemo has it's side effects. As I said before, my mom didn't do that great with her 2nd round of chemo.  It was a tough 6 months, but she made it through.  Keytruda has much less severe side effects for most people.  If you want, you can check out my mom's journey through her 1st year of Keytruda.  I talk about the side effects and troubles she had throughout the treatment.  You can find it    here.   I hope it provides you hope, that's my intention.
I know that you are probably in a dark place right now, I get it.  When I reached out to these forums, I had never been so lost in my life.  These forums and the information from LUNGevity helped me find my way and helped me to advocate for my mom.  If you were to ask my mom what kind of cancer she has, she would tell you lung cancer.  She doesn't know non-small cell or adenocarcinoma.  When you ask what kind of treatment she has had, she will say a lobectomy, chemo, radiation, and Keytruda.  And that's enough information for her.  I love that your mom's only job is to get better. I have the same philosophy.  I'm an only child and my dad has dementia, so I am it when it comes to the "team" of advocates for my mom.  I hope you have more support as it's an exhausting journey.  Arm yourself with knowledge and know that you are going to second guess yourself a lot.  But that's okay.  There's no clear cut path, your mom is forging her own path as a warrior.  

Thank y’all so much for the responses and support!  This community really is awesome.
@Rower Michelle I just ordered that book and had a copy sent to my mom as well! I can’t wait to read it! I will also check out the Facebook groups. Thank you so much for the information!!
@Curt thank you so much for the response and information as well! I’m so happy yours was caught early on! Thank you for providing the link, and I will definitely check it out. 
Unfortunately, we just found out that we no longer qualify for the clinical trial to target the brain lesions because my mom has been on steroids. I guess at this point we will just be doing targeted radiation for the lesions and then chemotherapy for the lung cancer and go from there. It’s been a little more than a month since the diagnoses and we haven’t started any type of treatment yet which is the most frustrating part I think. Maybe once we begin, and we are able to feel like we are actually doing something proactive, things will feel a little bit better. 
I don’t know the success rate of regular chemotherapy on this type of mutation, but I’d imagine clinical trials will be in our future at some point. I’ll definitely be looking into them a lot over the next few weeks/months so we can be prepared if that’s the direction we will be needing to go.
Again, thank you all for you support, knowledge, and encouragement. I really am so thankful to have found this community! 
 
 

Katum31,
Hi and welcome.  So many of us know all too well the fear, anxiety, anger, and sadness you are feeling about your mom's diagnosis.  I was buried in these emotions when my mom was originally diagnosed and then even more so when she was diagnosed with her recurrence.  Like your mom, my mom is young too (61 years old at diagnosis, almost 65 now).  My mom was also a late-stage diagnosis.  Your question about what to expect is a good one...I wish I could help more, but everyone is so different when it comes to treatment side effects.  Here is what I can tell you about my experiences, maybe it will help a bit.
Brain radiation - my mom's best friend and my uncle had cyber knife for brain mets from lung cancer - both did well with it.  The major side effect was tiredness.  My cousin's wife just had whole brain radiation and spot radiation for mets from breast cancer.  She's only in her 30's, but all she experienced was some tiredness.
Radiation on the hip - my cousin's wife is also going through radiation for mets to her hip (breast cancer).  She was in intolerable pain from the bone mets.  After 2 sessions of radiation, her pain began to get much more tolerable. She had no real side effects.  She will have periodic radiation to that met for a long time as she has the most aggressive type of breast cancer - they are just trying to help with quality of life at this point.  Luckily, non small cell lung cancer is not as aggressive.  
Chemo - my mom has gone through 2 different bouts of chemo.  The first time she did great, the second time, not so great.  One major determinant of chemo effects is the type(s) that your mom will be getting.  Do you know what chemo(s) she will be getting yet?  I also personally feel that the patient's overall health and state of mind can play a crucial part in how bad side effects can be.  With the 2nd bout of chemo, my mom was already having other health issues that got worse once chemo started.  But my mom is a VERY strong person.  She pulls through all of these health issues like a warrior.  I am happy to hear that your mom is a warrior too.  
The best piece of advice I can give you as a caregiver/care advocate is to arm yourself with knowledge.  It was my mom's job to be the patient and my job to be the knowledgeable one and advocate for the best care she can get.  There's a lot of "crap" out there posing as lung cancer "facts" and it's hard to sift through what is good info and what is crap.  My suggestion is to start with LUNGevity's website..."Lung Cancer 101" is a great first page to check out and go from there.  Also, reach out to us.  There are so many survivors here that can likely answer just about any question you have.  We are here for you. You are not alone.
And finally, I want to reassure you that there is hope. 5 years ago, a late stage lung cancer diagnosis was a likely death sentence, but NOT TODAY.  Get your mom going through treatment and ride the crazy roller coaster of life with lung cancer, that's all we can do.  Advocate, take good notes, and appreciate all of the time that you have left with your loved ones - something we should be doing no matter what.
Take care,
Steff

Hello.  I am sorry to hear about your mom’s diagnosis.  Lung cancer is a disease that grows quietly and is often discovered because of symptoms unrelated to the lungs.  It is usually a huge shock.  I am also a “mutant” with a Stage 1 NSCLC Adenocarcinoma with an EGFR Exon 19 deletion.   Like Lexi mine was caught early enough and was able to be treated with surgery.  I won’t have any follow up treatment.  The EGFR exon 20 mutation is one of the rarer mutations.   I do believe that the current TKI treatments, which Tagrisso is one, have been found to be ineffective with the exon 20 mutation.  I do believe there is a new TKI drug being developed called TAS6417.  This is all information you should consult with your doctor on.  Like Michelle said, research and treatments are moving quickly.  I found this link on TAS6417  https://www.biospace.com/article/releases/taiho-pharmaceutical-and-cullinan-oncology-establish-collaboration-to-develop-tas6417-novel-egfr-tyrosine-kinase-inhibitor/
I’m glad you found this site (but sorry you had to), check back with questions and updates when you need to.

Hello- welcome to your new family.  I’m one of those Stage IV healthy people.  It’s more common than any of us could have ever imagined.   You might want to check out Diana Lindsay’s “Something more than Hope”.  She shares her survival story as an EGFR mutant which is so inspiring.  Stephen J Gould wrote a very powerful essay- The Mean Isn’t the Message.   It’s so on point!   The internet is a scary place & the data points do not account or reflect the recent advances in LC treatment  
Another terrific resource is Anti-Cancer Living.  Lots of great information in there too.  
In addition, Facebook has some great support for EGFR & the Exon 20.   
Knowledge is power & hope is the driver on this road.  There’s so much hope on the horizon with all these clinical trials.  Stay strong.  We’re here for you! 
Michelle 

Hi there, and welcome.
I'm sorry about your mom's diagnosis.  Unfortunately, being "healthy" doesn't prevent a person from developing lung cancer, but it really does provide an advantage when it comes to fighting it.  It's great that she came through the brain surgery so well.  
We have quite a few members here who have long-term survival after a Stage IV diagnosis, so there's plenty of reason to hope.  Others here will have more input on the chemo/immunotherapy/clinical trials issues--I was one of the lucky Stage I people, so surgery is the only treatment I have personal experience with.  But the others will be along soon.
Glad you found us--this is a great place for information and support.

Was diagnosed in April 2012 at age 67 with stage 2 squamous. Had lower left lobe removed. No other treatment. 7 years later still cancer free.