Susan Cornett

Hi - just wanted to say I'm glad you found us. I know it's hard at this point but try to stay positive. So much has changed in lung cancer over the years and it's not the death sentence it once was. I was diagnosed with stage IV adenocarcinoma in February 2016, and I've been NED (no evidence of disease) since October 2018. Treatment was tough - not going to pull your leg on that - but I'm here to talk about it. That's what matters.
Keep us posted on your progress.

Hi - just wanted to say I'm glad you found us. I know it's hard at this point but try to stay positive. So much has changed in lung cancer over the years and it's not the death sentence it once was. I was diagnosed with stage IV adenocarcinoma in February 2016, and I've been NED (no evidence of disease) since October 2018. Treatment was tough - not going to pull your leg on that - but I'm here to talk about it. That's what matters.
Keep us posted on your progress.

Hi - just wanted to say I'm glad you found us. I know it's hard at this point but try to stay positive. So much has changed in lung cancer over the years and it's not the death sentence it once was. I was diagnosed with stage IV adenocarcinoma in February 2016, and I've been NED (no evidence of disease) since October 2018. Treatment was tough - not going to pull your leg on that - but I'm here to talk about it. That's what matters.
Keep us posted on your progress.

Kelvin,
Sorry to learn of your mother's diagnosis; I was also diagnosed Stage IIIB in February 2004 and had a multitude of treatments. Some worked and some did not. But, I'm here. I can't share a happy story for I find no happiness in lung cancer but my hopeful message for your mother is if I can live, so can she.
Stay the course.
Tom

Steph - 
Your mom has helped so many with her knowledge, wit and empathy for all of us. I am saddened by this latest turn but pray that hospice gives her the relief she desires. I know this is a difficult time for you as well. We'll always be here for you.

Steph - 
I am so sorry for your loss. She was so loved and will be missed. Keeping you and your brother in my prayers.

Steph - 
Your mom has helped so many with her knowledge, wit and empathy for all of us. I am saddened by this latest turn but pray that hospice gives her the relief she desires. I know this is a difficult time for you as well. We'll always be here for you.

Steph - 
Your mom has helped so many with her knowledge, wit and empathy for all of us. I am saddened by this latest turn but pray that hospice gives her the relief she desires. I know this is a difficult time for you as well. We'll always be here for you.

Lizzy - 
Happy New Year! So happy your son and granddaughter were able to visit. I know you enjoyed it. Your decision to get rid of things that weigh you down is so smart. I truly believe that the mental aspect of this fight is equally important as any medical treatment. You can focus on treatment and then have a clean mental slate when you finish treatment. 

Lizzy - 
Happy New Year! So happy your son and granddaughter were able to visit. I know you enjoyed it. Your decision to get rid of things that weigh you down is so smart. I truly believe that the mental aspect of this fight is equally important as any medical treatment. You can focus on treatment and then have a clean mental slate when you finish treatment. 

Hello Everyone, and Happy New Year to you all. So, quite a bit has gone on since my last post but it is all good in the grand scheme of things. So to break it down into subject matter I think is the easiest.
The 7 head mets and the gamma knife treatments. Apart from the seizure after the second gamma knife session on Dec 4, no further indicents and is taking Keppra. Had 7 gamma sessions altogether the last being on Dec 22. As the gamma keeps working for up to 8 weeks they will next do an MRI up there at the end of February to see where we are at with how many mets remain and if any further treatment is needed in March.
The big tumor in my lung. Started targeted radiotherapy for that early December. Had 12 sessions in all, last one being January 4th 2022. It will keep doing its thing for another 3 weeks or so, so around the end of January they will do another scan to see how the tumor reacted. She did say that if it didn't shrink it back to where she is hoping for, she would probably refer me to the gamma doctor to look at Cyber Knife options. So looking at February for more updates there.
The cancer/chemo. Chemo session #1 back on Dec 6 was very kind to me in side effects. Subsequent mouth and GI tract sores were treated with "Magic Mouth" compound before eating and it's been wonderful for the sores. Bloodwork Dec 23 showed need for magnesium, potassium supplements and Chemo session #2 set up for Dec 27 with Keytruda as my PDF1 showed immunotherapy was good to add the chemo itself. Bloodwork Dec 27 before chemo session showed large drop in red blood cells and overall hemoglobin. Two points away from need for blood transfusion.  Chemo #2 cancelled and reappointed for Jan 6 with a goal to gain weight through high protein intake hoping for a knock-on improvement to red cell levels. Yesterday red blood cells showed to be going back the right way and a weight gain, so chemo #2 with Keytruda went ahead. Next session in 21 days.
So all in all, medically I could not ask for better care and actions.
My son and grandaughter from Britian were able to stay until New Year's Eve, that was so joyous! Medicine all in itself!
In other life.... I made lists of what is important to me and how I plan to mentally stay strong which includes losing what weighs me down and what keeps me feeling like I need to be more than cancer regardless of prognosis. So, retired from my job effective 12/31. Huge weight lifted from my shoulders. Company had no sick pay/leave policy, hospital appointments were more important, so work has gone. University however is staying. It is actually something that gives me focus on more than just cancer and motivation to achieve and learn. I've come to terms with communicating with people and not being able to keep up with all of their preferred communication platforms. I set up an instagram page to put out info and updates. It's worked really well so far, a mix of silly and serious, people seem much more relaxed to talk about cancer now.
So all in all it's going great in these first few days of January. I know the road is a long one unless an "uh oh" pops up, but I am feeling mentally and physically ready to walk the medical treatment path, time manage my university learning to make it fit around medical schedule (has a great tutor - compassion without pity), and a wonderful husband and son and we are all in sync about how we cope and communicate our fears, hurts, joys, to each other. 
So next 21 days looks like dealing with chemo #2 after effects, studying the German and Russian Revolutions and the Irish War of Independance that all were consequence of the aftermath of WWI. 
Right then, that's me up to date I think. Hoping everyone is doing well with their treatments! And thank you so much to the long-timers for their knowledge and the links they are sharing.
Lizzy
 
 
 

Sending good thoughts your way 

Sending good thoughts your way 

Hello Again, quick update from me and my neurosurgeon visit on Wednesday. He ordered additional images as he thought there was more to story than was being seen on taken images. He was correct. New CT showed the two MRI identified spots and 5 more. None were candidates for surgical removal due to either their locations, sizes or individual behavior problems, edema, hemmoraghing, etc. He felt whole brain radiation would be too risky to healthy parts, so proposed fractional gamma knife radiation to all 7 sites over 6 to 8 sessions. On Thursday he iradicated 3 small ones in one gamma knife session, and worked on the biggest hemmoraghing one. He said no more until next Wednesday to have rest up and watch the edema etc. But he and oncology agreed chemo is to start Monday (minus Keytruda for now - not sure why, oncologist will be going through that with me on Monday) before Chemo infusion because it was all a bit too much to take in yesterday after the gamma session and being so tired). Also getting tatted and marked up for radiation to the original mass from four weeks ago in the lung on Monday. That treatment will also run concurrent to chemo and gamma. Feeling very tired today but good in spirits. Best medicine so far... my son calling from England at 4am this morning to say he, his wife and my granddaughter are arriving here on Sunday while current travel/testing rules are stilll in effect between UK and USA until Monday. So, for me Christmas is coming early in my home this year through all of the wonderful medical people I am meeting, the efforts of everyone, and my family being here in about 48 hours from now.
 

Hello Again Everyone, 
What a busy day! Had a very informative and supportive meeting this morning with my Oncologist, my freight train continues to roll...
Diagnosis Stage IVb (T3 N2 M1c) 
Next up, 
Tues 11/23 biospy adrenal gland,
Weds 11/24 - port being put in chest (Thursday 11/25 day off for turkey day)
Fri 11/26 - Brain MRI
Current chemo infusion plan to start w/c 11/29 is Carbo (AUC 5) +Pemetrexed (500mg/m2)+Pembro (200mg) unless Brain MRI shows positive, then drug plan will change.
Also starting palliative care w/c 11/29
Feeling much more empowered tonight. Knowledge IS king. I truly appreciate my Doctor's openness today with everything. Kind and caring, and NO sugar coating. 
Again, thanks everyone, your support has been truly invaluable to me this week. Take care all.
Will update again after brain MRI result known.

Hello Everyone,
Thank you all so much for your kind words, practical advice, and shared experience. It means so much. Especially for helping me to formulate a list of points to ask the oncologist about, I am definitely not planning on playing Dr. Google.
Update - yesterday I received a call with 1st appointment date with the oncologist, it's this Friday! And I've also been scheduled for a brain MRI next week. Feeling so fortunate to have this medical team around me.
Thanks again All,
Lizzy

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. 

@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!

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. 

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. 

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. 

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. 

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,
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- 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