ColleenRae

When I was first diagnosed and had surgery ten months ago, your mother was one of the very first to help me calm down and brought me much hope. I will never forget her kindness.

Hi Steph,
I’m very sorry to hear this news.  We know your Mom well here, as a frequent contributor & occasional Zoomer.  There comes a time when hospice becomes the brave choice.  We will pray for your family during this very difficult time.   
Michelle

I'm so sorry to read your post. I will miss her steadfast encouragement for everyone in this forum. Her advice has always been sound and wise, and she has always spoken so highly of her children. 
Please let her know how much we appreciate her and that she is wished peace and comfort. Take good care and thanks for keeping us informed. 

Steph,
My heart breaks for what is happening to your Mom.  She has always been a brave and strong woman and she isn't changing in this situation.  All my prayers for her to have peace and comfort and for all of your family to pass through this most difficult time with peace and strength.  A wonderful woman and friend, she was one of the first people to greet me on this forum and I found strength in her attitude and courage.  I will not forget what she did for me and many others here.
Lou

Steph,
 
I am so very sorry to learn of what is going on.  She sure is brave.  She has helped me tremendously along the way as well as many others as you can see.  Please let us all know if there’s anything we can do.  Sending hugs and prayers to all of you.
Babs

Dear Steph,
I can't find the right words to say other than I am heartbroken and so sorry that your mom and your family are going through this.  You sound like such an amazing young person; obviously your mother's kid!  Just feel sick reading this. Your mom has given so much of herself on this forum (and I suspect in all aspects of her life); it's really hard knowing there is nothing I can do but praise you for your love and care for her and wish her the peace and comfort she deserves.  I lost a brother years ago (HIV) and it was the most painful and yet  one of the most intimate and powerful experiences of my life caring for him. Thank you for taking the time to post. As you can see - Teri truly means a lot to this community.  Your mom really is fortunate to have you. Please know you are all in my thoughts here out west in WA state.  Love to Teri always... Colleen

Dear Steph,
I can't find the right words to say other than I am heartbroken and so sorry that your mom and your family are going through this.  You sound like such an amazing young person; obviously your mother's kid!  Just feel sick reading this. Your mom has given so much of herself on this forum (and I suspect in all aspects of her life); it's really hard knowing there is nothing I can do but praise you for your love and care for her and wish her the peace and comfort she deserves.  I lost a brother years ago (HIV) and it was the most painful and yet  one of the most intimate and powerful experiences of my life caring for him. Thank you for taking the time to post. As you can see - Teri truly means a lot to this community.  Your mom really is fortunate to have you. Please know you are all in my thoughts here out west in WA state.  Love to Teri always... Colleen

Steph,
I know your mom personally. We met at a Lungevity Summit several years ago and had a grand old time discussion things common to my (our) hometowns: Philly and Camden. Of course, I'm sorry to learn of her transfer to hospice care. Having said that, I completely understand her desire. 
Tell your mother we admire her courage and commitment to advancing the science of lung cancer treatment. Tell her also of our appreciation for her time spent educating, sustaining and supporting those with lung cancer on this forum. Tell her of our love and our prayers. I wish her peace of spirit and mind.
Stay the course.
Tom

Dear Steph, 
I'm so very sorry to hear about your mom. She has inspired and helped so many of us on these forums. 
I sincerely hope that she knows how many of us she has touched. I completely understand her decision to transfer to hospice care but know it must be so hard on the family.
I hope she finds peace and comfort.
 
Love, 
Ro
 

Hi everyone,
Sorry I haven't been doing a good job with regular updates here.
Mom discharged home from the SNF and was home for a couple weeks.
She was having a lot of problems with her mobility and standing up and getting around on her own. But we were improvising and finding solutions as we went.
She had 2 more weekly carboplatin infusions but this Friday, 4 days after the 2nd infusion, she went to the bathroom and it was almost entirely blood.
I took her back to the Hospital of the Univeristy of Pennsylvania ED and they admitted her. However, at this time she's declining all diagnostic procedures to identify the source of the bleed and stopping it. She's adamant on transferring to inpatient hospice care and discontinuing all treatment and procedures unrelated to pain management, as is her right.
It's unlikely she will post here again. I know you all understand how difficult of a time this is for her and the rest of our family and that I don't anticipate being very active here at least in the short term.
However, I promise I will update you all if/when anything happens or changes. I know she loved this community dearly and it helped her a lot and she truly enjoyed being able to help others in their journeys as well.
I'll keep you all in my thoughts and I know you'll do the same for her. ❤

I have been away for a long time - trying to catch-up on some posts tonight and saw the topic...  I was so sorry to read of Teri's troubles but hopeful to hear things are getting better. She amazes me! I will definitely be sending good vibes her way. She has helped so many of us on this forum and she means a lot to each of us. Thank you for letting us know. She is fortunate to have you!

I have been away for a long time - trying to catch-up on some posts tonight and saw the topic...  I was so sorry to read of Teri's troubles but hopeful to hear things are getting better. She amazes me! I will definitely be sending good vibes her way. She has helped so many of us on this forum and she means a lot to each of us. Thank you for letting us know. She is fortunate to have you!

I have been away for a long time - trying to catch-up on some posts tonight and saw the topic...  I was so sorry to read of Teri's troubles but hopeful to hear things are getting better. She amazes me! I will definitely be sending good vibes her way. She has helped so many of us on this forum and she means a lot to each of us. Thank you for letting us know. She is fortunate to have you!

I have been away for a long time - trying to catch-up on some posts tonight and saw the topic...  I was so sorry to read of Teri's troubles but hopeful to hear things are getting better. She amazes me! I will definitely be sending good vibes her way. She has helped so many of us on this forum and she means a lot to each of us. Thank you for letting us know. She is fortunate to have you!

Hey all,
Mom is making a lot of progress. Things are going slowly but she's making all the right progress she should.
The doctors are hopeful they will be able to discharge her to a rehab/SNF on Friday to start getting some strength back so she can come home and not require 24/7 nursing.

Hey everyone!
My apologies, I did not realize she had not been posting and had a couple people reach out expressing concern that they hadn't heard from her.
Mom was in some pretty severe GI discomfort the 15th and 16th. She wound up asking to go to the hospital early AM on Monday the 17th. She was admitted in patient for severe constipation and was there until Friday the 21st when she discharged home.
Unfortunately it was a pretty short stay as she began having bloody diarrhea and was passing clots in her stool. So we went back to the hospital yesterday morning. She's currently admitted at Penn. They're still trying to figure out the details but they don't think she's actively bleeding at the moment.
Her care team sounds confident they can get it sorted and get her back in good shape. It's possible she may need to discharge to a rehab or SNF before she can go home.
Feel free to send me a direct message if you want to talk further, otherwise I'll update here as things progress or if anything changes.

These definitions were provided by a general medical oncologist who treats most forms of cancer. He cautions that although the terms have distinct meanings, there is overlap.
Cure. Should be reserved for specific diseases where recurrences happen quickly and one can safely say there is a cure. Not useful for diseases like most cancers where recurrences can occur up to 5-10-20 years later.  Mostly applies to non-melanoma skin cancers.  Commonly used by surgeons who don't follow the patient long-term and want the patient to feel good about the surgery. But this pronouncement can be VERY misleading as I have had patients without followup because the surgeon said: "I was cured,” and then suffered a recurrence.  I use it with qualifiers, such as "about 95-percent chance of a cure" if someone is still free of disease at 5 or 10 years in concert with statistical predictions.
5-year survivor. This term is mostly used to describe patients if still free of disease at that time, and often implies a reasonable chance of a cure.  Most commonly used term now and has supplanted the use of term "cure".
No evidence of disease (NED). Describes how things are at a specific time, such as after scan, surgery, re-staging workup, after chemo, or XRT [radiation therapy].  This is a point-specific-term, and is good, but does not guarantee anything long-term.
Remission. Similar to NED, but usually used after someone has had disease treated by XRT or chemotherapy and not just surgery but is a general term. It IMPLIES a complete remission but not always. The disease has disappeared at least for awhile, to exam or testing.
Several sub classes of remission:
Partial remission (PR) meaning at least 50% reduction in the bulk or evidence of the cancer, usually measured by size in mm or cm. Minor remission or minor regression suggesting the same but at least 25% reduction in size/bulk of the cancer and a less useful term. Complete remission (CR) meaning all evidence of cancer gone after some treatment. Once again, usually after XRT or chemotherapy, but not surgery (surgeons usually just say, "I got it all”). Complete pathologic remission (CPR) (also called complete pathologic response) usually implies that the patient received chemo or XRT PRIOR to surgery (neoadjuvant therapy) to reduce the size of the cancer prior to surgery, and in the final surgical specimen NO cancer was found pathologically. Often used for breast cancer patients.  Partial pathologic remission like CPR but with a poorer outcome. Implies the cancer is sensitive to the treatment but not 100-percent, and often implies need for more therapy after the surgery. Stable. Implies the disease has not grown nor appreciably shrunk (due to variance in measurements, this often suggests a single change +/- 10%), and then the trend in change is the most important determinant.  Used to be considered a reason to change therapy, but in some diseases may imply continued survival benefit, and thus no need to change therapy.
Progression. This is the worst outcome suggesting significant growth or continued trend in growth and implies need to change therapy.  If no therapy, then "Best Supportive Care" (BSC) like Hospice or comfort measures.
There are three other terms used for surgery results: R0, R1, and R2.  These describe visual and pathologic review of the resected cancer specimen.  
R0 implies all cancer removed. No obvious visually or microscopically identified cancer seen. This is the best result after surgery. R1 implies no visual cancer seen, but microscopically tumor can be seen at the margin of resection and suggests some tumor left behind. Likely needs additional resection, or if not feasible, XRT or chemotherapy afterwards to treat the area. R2 implies visual tumor left (macroscopic) and means the same as R1 but a less successful outcome ("I had to leave some tumor behind, it was attached to an artery or major vein, etc").

Hey all.....new here   Yesterday was year 7 of having my upper right lobe removed for a stage 1B.  I understood I qualified as "B" because my tumor was .5 centimeter larger than 1A would dictate. But because it was only a 1/2 centimeter I chose not to have chemotherapy.  Fingers crossed!
The reason I'm here is because I just had my follow-up scan and the way they did it this time caused me my little freak out now......in the last 3 or 4 CT scans it was in and out....the machine whirs up and I breath in, hold and breath out a couple times then I'm done..  This time they did the usual couple times and then a 3rd time they went incrementally moving a little bit each time and having me breath in and out each time.  They've never done that before.  It makes me fear the cancer has returned.  I can only find solace in that if there IS cancer again it's caught early......but I can't shake my fear.  I can't talk to anyone about it because everyone would jump in this worry bucket with me.  I have to wait until I hear from my Oncologist because they found something  or until my appointment with her on Oct. 1st to get the results......the old adage "no news is good news" works here for me.......sigh.....but I hate this.  I hate the reminder, the fear and anxiety that goes with this.  And just so you know: I smoked for 27 years.....I quit the day my Dad told me he had lung cancer and then he died 3 1/2 weeks later.  I lost a first cousin when she was 48 to lung cancer and then my mother died from lung cancer so there's a history that makes my oncologist nervous to stop seeing me after the 5 year mark......so here I am having just past that 7th year.
I know there's really nothing I can do but this cancer monkey mind gets me every time I get this scan.
Thanks for letting me share........ ❤️ 
 

Just to give some perspective as to how fast the research is moving…. Three years ago I was told upon learning my stage IV diagnosis to get my affairs in order…quickly.     New biomarker methods identified a mutation the “old” testing missed.   So hold onto hope there’s a new horizon for lung cancer survivors.   

Good Sunday Morning to all,
A philosophical post this morn......a little sadness, a little spiritual joy, intermingled with this journey called life. Allow me this time, with words, to express what is on my mind. The Durvies know me, so it is here where I will post and release the "Cracken" of my thoughts. It's also dedicated to Rower Michelle and Eagle 13.....read on. 
Recently, my bff of some 50+ years lost his partner Bill of 35 years, to cancer. They were gay and during the turbulent years of the 80's with HIV, panic and fear made them hide their sexuality, their coupling. It was a difficult time, the 1980's, as beautiful young men and women were dying in droves and there seemed to be no end or resolution to the HIV virus and crisis.
At the time, I was doing home health nursing in Hawaii. It was not unusual for gay couples to bring their entourage of friends with one dying friend to celebrate their last days in paradise. I was the nurse who went out to their luxurious vacation homes or condominiums on the beach, infused their "HIV" medications and gave them new IV packs of morphine to control their pain. 
I was tasked with visiting my HIV patients on an 8am-4pm schedule. Receiving the HIV infusions usually ruined the rest of the day for my patients so there were times when I broke the rules and would schedule a visit at night to allow my patients a "free" day of vacationing. Of course these night time visits included some blackmail as in providing me with a delicious home cooked meal or a nice new haircut and do, followed by a mai tai or two. Despite all this sadness around dying, you try to find some light and humanity.
Bill and my friend were not high risk and they weathered the HIV storm and lived a good life until Bill's diagnosis of Cancer. He passed within 18 months of diagnosis. Those 18 months were pure hell for my friend the caregiver and Bill, the patient. Bill was in treatment, suffered thru numerous hospitalizations and indignities. In came the hospital bed and wheelchair and daily dressing changes and doctor visits and social workers pushing to Hospice and hurried doctors. A world turned upside down. 
I asked my friend how I could help and he denied needing any help, he was taking care of business. His emotional grief was held at bay In lieu of pragmatic necessities and I honored his request. 
Last night I learned of Opal's  (our fellow Durvie) husbands passing last week Sunday. His body had succumbed after four years of living with Pancreatic Cancer. It got me thinking (as you can tell) about a myriad of things. Most of all, I thought about how much Opal has to contend with and it made me sad. Like the sadness I felt caring for so many HIV patients and my friend who cared for Bill. You are able to help the patient as their needs are direct and most times, solvable. But my feeling of helplessness and empathy to help those that are left behind stay with me, ever present.
We all know how much processing has to take place, the utter shock, the waves of grief, a new life to navigate. Somehow, our friends and family navigate thru all the challenges and like Cancer, our lives are never quite the same. And like cancer, it's a solo journey of navigating thru OUR uncharted waters. 
Thank you Opal for trusting me with your heart, your feelings and inviting me into your canoe. You will do almost all of the paddling alone,  but you know you have a team that will be there as you steer, guiding and supporting you on your new journey. You are loved.
Let me also relay that Opal's last scan was reported as stable, next check in 3 months.
Take Care, DFK

 
 

Hi Diane, I'm sorry to hear of your husband's diagnosis.  LUNGevity has a clinical trial finder and can also connect you with a clinical trial navigator if you decide to go that route.  The information for both is HERE.  Lung Cancer 101 might also be helpful for you. We are here to support you!

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! 
 

Here is my stance on survivorship:
I had read what Don posted, that if you don't die on the spot with the diagnosis, from that point on, you are a survivor. I read it, but counted from the time I had surgery and that nasty little critter was yanked out along with some good tissue and left behind some really scary mental monsters to deal with.
I read about two-year statistics and five-year statistics and felt that reaching certain milestones would "allow me to live" again and reclaim my old life. I was wrong.
I beat the odds that were stacked against me and made it to the two-year point earlier this year. For TWO YEARS, I felt as though I was living on borrowed time, that I had lived through diagnosis and surgery but that I was merely spinning my wheels because it would probably come back...
I WASTED two freakin' years waiting for the other shoe to drop. Not the whole time, mind you, I took in weddings and grandbabies and sixth grade graduation and planted flowers that I fully expected to see bloom, but in the back of my mind, that monster was still growling and getting loose at times...
I am now two years, six months and five days from diagnosis. I've been through two winters and autumns, three springs, three summers. My husband and I have married off his two daughters, welcomed three grandbabies, attended a high school graduation, adopted a puppy and built a new house. We have also buried two friends, two grandparents, an uncle and a beloved dog.
Life HAS gone on, although the cancer was a pit stop for me, life continued to zoom on at a fast pace. I am now the mother of a teenage boy with many rough days to come, I'm sure. Instead of wondering if I'm going to be around for all the new milestones in his life, I'm going full steam with all plans that I WILL be here, there is no other option.
Oh, the monster? He wrestles out around test time and then I beat him back into the corner and duct tape him up to his eyeballs. We are not friends, the monster and I. He represents too much negativity and doubt and there is no room for him in my life.
Anyone newly on this journey should understand that the wake-up call is a reminder not to WAIT to live, but to get on with the business of living because NO ONE KNOWS the date written as the end of their days in the big Book of Life. Beware of beer trucks!
...and I really didn't "waste" that time, I battled a monster in my mind that assured me I wouldn't live two years - and the monster was wrong. I DID live, I did participate in life, but many of my perceptions changed. I'm not afraid of much anymore, and that certainly changes how I deal with difficult people that live by intimidation. I don't have a "career", I have a job. They pay me, I work. I don't want to travel and be away from my family, I just want insurance and a way to earn money. If I died tomorrow, my workplace would be looking for my replacement the next day - my family could never replace me. Guess where my heart is?
Time to live...
Becky

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.  

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