Mom newly diagnosed with Stage IV NSCLC

[Katum31]

Hi everyone!  I’m here because my mom was recently diagnosed with Stage IV non small cell adenocarcinoma that metastasized to her brain and hip bone. 

It all started when she went to the doctor because her hip had been hurting her. She thought maybe she had arthritis in her hip, but a scan showed that it, unfortunately, wasn’t arthritis. Multiple scans and biopsies later we find out it’s lung cancer with an EGFR gene mutation and an Exon 20 insertion.

After we found out the diagnoses, we learned that she had one large brain metastasis and about 4 very small ones. The largest one was pushing on her occipital lobe and causing vision problems, so about 3 weeks ago (1 week after diagnoses) she had surgery to remove the big lesion. The surgery went extremely well.  They were able to get all of the biggest mass without having to cut into the brain tissue too much. She recovered so well from that surgery. 

In terms of actual treatment, we haven’t started anything yet but that is coming in the near future. Her oncologist had first recommended Tagrisso due to the EGFR mutation, but then decided against it because of the Exon 20 insertion and ultimately decided on chemotherapy and immunotherapy for the lung, and then radiation for the brain lesions. We just had an appointment with a cancer center here where I live in Houston to get a second opinion and maybe see about clinical trials that were available, and unfortunately that appointment was a bit disappointing.  They ultimately said that their clinical trials are currently full, and they recommend doing treatment with the original facility except they don’t recommend immunotherapy because it may interfere with clinical trials available to us down the road. There’s also a clinical trial currently going on for the brain lesions that she qualifies for at the original facility as well. 

So within the next couple of weeks we will be starting calcium injections to strengthen her hip bone, chemotherapy to target the lung cancer, and gamma knife radiation for the brain lesions. 

She’s still young (only 60) and she’s so healthy which is why this was such a shock. She’s had bloodwork done for her thyroid every 6 months for the last 20 years and nothing has ever been abnormal. She’s gotten all of her annual tests and screenings they recommend and everything has always come back perfectly normal. It’s just been such a shock. I love this site because the stories I read give me so much hope. 

If anyone is out there with some encouraging words or stories I would be so grateful to hear them. I know everybody is different and statistics don’t always mean anything, but it’s hard to not get caught up in them, and they can really bring you down 

 

[LexieCat]

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.

[Katum31]

Thank you so much for your response!  It’s just so amazing and terrifying how healthy a person can appear, but we have no idea what’s going on inside the body. 

The last month has been filled with so much fear, anxiety, anger, etc. but I love the survivor stories because they give me so much hope. 

Mom is a fighter, so I’m trying to remain as optimistic as possible 

[Rower Michelle]

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 

[Curt]

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.

[Katum31]

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! 

 

 

[Steff]

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

[Katum31]

@Steff thank you so much for your reply and for sharing your experiences with the different treatments. I really appreciate it so very much! 

Your mom definitely sounds like a warrior! I’m glad that she was able to push through, and I hope that she is doing well now! 

The chemo regimen that they plan to put my mom on is carboplatin/pemetrexed/pembrolizumab. I was under the impression that we weren’t going to do immunotherapy, as the oncologist we got the second opinion from say it may interfere with clinical trials in the future... but it’s my understanding the the pembrolizumab is a type of immunotherapy treatment.  This really is all so confusing and conflicting information definitely doesn’t help. 

Since this started I told my mom her only job through all of this was to get better and to leave everything else up to us. I’m making it my goal to learn every single thing I can about this, so I know that we are doing everything possible to get her better.

[Steff]

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.  

[LexieCat]

It's great that you are doing so much research and are willing to advocate for your mom.  I don't know your mom, but I do know this about myself.  For me, even though I value the support and input of my family, I would not be comfortable turning over all the information and decision-making to them.  At least as long as I am capable of doing so, *I* want to be the person making fully-informed decisions about my own treatment.  So make sure you aren't shutting your mom out or making her feel like she doesn't need to know what's going on.  Some people (like Steff's mom, apparently) really don't want all the details.  But a lot of us do.  Everyone is different.  Just be careful that in the interest of doing what you can to help you don't discourage her from taking an active role in her own treatment.

I hope you don't take offense--none was intended.  It's great to have kids who care so much.

[Susan Cornett]

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. 

[Katum31]

@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!

[PaulaC]

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

[LaurenH]

Hi, Katum31,

Welcome to LCSC. My name is Lauren and I'm the Digital Community Manager for LUNGevity Foundation.

I'm glad to see that you've already connected with a few of our members. This community is a great place to find information and support. Please feel free to explore the message boards and blogs, ask questions, and join the ongoing conversations.

In addition to these forums, LUNGevity also has a robust Lung Cancer 101 website, free patient educational materials, a Survivor and Caregiver Resource Center, peer-to-peer support programs,  a toll-free Lung Cancer Helpline, survivorship conferences, and lunch and learn events. You can explore more here: https://lungevity.org/for-patients-caregivers

Please let me know if you'd like any additional information about LUNGevity's Support & Survivorship Programs.

We are here for you!

With gratitude,

Lauren
--
Lauren Humphries
Digital Community Manager
LUNGevity Foundation

[ale]

Good Morning, I'm italian and sorry for my english...I'd like know if Egfr is ereditary, my mother (73 age) have Egfr+exone 21 and take Tarceva from dicember... thanks

[LexieCat]

EFGR is not hereditary--it's just a mutation found in some cancer cells.  It is not a gene that is passed along.

[ale]

 Thanks, Lexie, I read yours message every day...in Italy there are not site like this for Lc... thanks!

[ale]

Another questione if some One know if is it possible a complete remission about pleural mets with Tarceva 100mg... thanks

[Katum31]

Thank you everyone for your encouraging words and support!! Mom just finished 5 rounds of targeted radiation for the brain metastasis. She’s still feeling good and has so far had no negative effects from the radiation. They also did a radiation treatment on her hip to help with the pain. 

She starts her chemo treatment Monday. She isn’t doing the immunotherapy at the advice of the oncologist at MDA, and apparently this is so she won’t be excluded from potential clinical trials in the future. 

She’s doing well right now, although she’s now saying her leg is hurting below the knee and there’s a fullness in her left lung. I’m worried that the fullness is pleural effusion, and I suggested to contact her oncologist, but she’s worried this could potentially push back the chemo treatment Monday, so she wants to wait until after the first treatment. I’m not sure if this is the right decision or not, but she says it’s not really affected her breathing, so I guess we can just wait until after the treatment Monday. 

I really do thank you all for the support as well as the resources y’all have made available for us to try and get a grasp on everything.

[Rower Michelle]

Hi Katum-

Thanks for the update!  Just a word of caution on the waiting.  Learning to be a patient requires patience on the mindset shift to live with this stuff.  A simple phone call can make the difference between peace of mind or a visit to the ER.  So often times we think we can tough it out when in reality with LC it’s better to be proactive.  LC is sneaky & we must not ever let our guard down.  

I had an issue with fevers after my first dose & landed in the ER.  The docs were very aggressive wanting to rule out a pulmonary embolism. A stat CT scan was ordered up & I had a fountain of blood draws.   Turned out to be a virus 🦠.   I was so glad to be “over treated”!

Keep us posted! 

Michelle

[Tom Galli]

Katum,

I would definitely disclose the pleural effusion (fullness in left lung) symptoms to the chemo nurse before starting treatment.  Let the nurse and doctor make the call on administering chem given this symptom.

Stay the course.

Tom

[Katum31]

Thank you @Rower Michelle and @Tom Galli for the responses!  Despite my efforts to convince her to tell her oncologist or chemo nurse prior to the treatment, she ended up deciding to go through with the chemo treatment and then contacting her oncologist (she was just really afraid it would prolong the treatment again).  The chemo went well and there are no side effects so far, which is good!

Unfortunately, the shortness of breath and coughing seems to be getting worse. She went to her oncologist yesterday who Did an X-ray that showed either fluid or consolidation but he wanted to contact the doctor who put in the chemo port to get his opinion, and then he will let us know the course of action. That was yesterday. Today we messaged him and he said the other doctor never responded, so he may be on vacation, and so he suggested we just wait until he gets back (whenever that will be?) before we decide on what to do. We’re hoping that they will get back with us sooner rather than later. I don’t know how fast fluid in the lungs can become very serious, so I’m hoping that just waiting a few days won’t ultimately set us back even farther. 

[Rower Michelle]

Hi Katum

Hope & wait are not words I’m generally not a fan of.  It’s too easy to get lost in the shuffle.  You might want to press again for a clearer answer.  Something doesn’t make sense to me. Typically the MD who inserts the port is an Intervention Radiologist- not a pulmonologist or internal medicine specialist.  They usually don’t follow patients after the procedure. I’d consider making another call to the oncologist if your Mom is not comfortable or the symptoms are worsening.   Keep advocating! 

Let us know how it goes. 

Michelle

[Katum31]

@Rower Michelle it was my understanding that the oncologist wanted to talk with the doctor who placed the port because he was uncertain if they should drain the fluid this soon after chemo as there’s an increased risk of bleeding due to the chemo. It honestly didn’t make much sense to me though. I had her contact the oncologist again because she’s having increased difficulty breathing along with increased discomfort and anxiety, and this time he apparently spoke with another oncologist who told him that if this were her patient, she would go ahead and drain the fluid, so he agreed to put in a thoracentesis order that will “hopefully be scheduled in the next few days”. I guess this is better than nothing but we are definitely pushing for the procedure to happen ASAP!

Seriously, thank you so much for your responses!! 

[Tom Galli]

Katum,

A thoracentesis procedure is a common remedy to remove fluid.  There is minimal pain in installing the temporary drain and relief from breathing discomfort is almost immediate.  

Stay the course.

Tom