Steff

My heart is broken yet again. Teri was such a wonderful person. The first time I met her at the 2018 LUNGevity Summit, she had on this really cool leather bracelet. I later found a similar one and had to have it because I loved her so much. Every time I wear it, I think of her. Now my heart will be a bit heavier when I put it on. Love you LexieCat 🧡

Great news Lindsay!

Bridget O - I used to have a magic wand, given to me when I first entered into social services.....but lost it years ago. I tried using it several times, but apparently I don't know how to use them and it was a complete failure 😁

My thoughts are with you during this time. I'm so very sorry for your loss

Susan - I echo your and Tom's thoughts - my mom says all of the time...I didn't beat lung cancer to die from this crap! lol I've been lucky enough to work from home too. I've come to absolutely love it and dread the day I must return to a physical office and coworkers (who aren't the furry, 4 legged type). As a part of management, I have had a voice in what our "new normal" will look like. My state has 4 phases of start-up, each County is considered a separate entity (apparently COVID doesn't cross county lines!). My county just entered Phase 2 (don't ask what that all means because I have no idea!), but it does mean that we are getting closer to going back to "normal" in a month or so. Now that I have a general timeline, my anxiety has peaked. I feel that if I am forced back into my physical office, I have to choose between my job and hugging my parents. I hate that this is a choice we have to make not only for ourselves but our loved ones. While I am less worried about myself or husband contracting the virus, our isolation is driven by our need to see our family. Although my concern has not been related to recreational activities at this point, I have given some thought as to what future concerts and similar large events will look like. I'm scared to think about it because my mom and my favorite thing to do is go to concerts. She has also gotten into the local non-professional hockey team in her town. I got her season tickets this year (prior to COVID) because she had so much fun with her friends at the games last year. I am sort-of hoping that the season will be cancelled so my mom isn't torn as to whether she should go or not. I really wish you had a crystal ball so you can tell us what to expect and what to do! lol

Diane- I am sorry to hear about the progression into your husband's brain. I hope that the radiation does the trick like it has for so many others.

I'm glad to hear that things are going as planned (well as planned as they can be!).

Barb - congrats on NED! Who knew scar tissue would be something to celebrate! lol

Congrats Tom! Love the blue!

Nice Job Charles!

Danielle, As always you have eloquently put into words how I feel every freaking day! Thank you! My to-do list is sometimes the most satisfactory thing I have during my day (especially since I gave up "bad carbs" at the beginning of the year! lol). My to-do list is the only thing I have control over most days. And although, 4 years into this, the to-do list has less to do with cancer related stuff (right now anyway), I feel it is still my way to have some control over the crazy life of a lung cancer caregiver/advocate. I have an aunt that always tells me to get some sleep or, take care of myself, when her idea of taking care of herself is heavy drinking. She always says she is there if I need any help, but it's only help that she wants to give when it is convenient for her. Her way of helping is to text me late at night (when she's inebriated) to tell me thinks like "I think your dad needs to go to a rest home so your mom can focus on herself" or "Your parents need to sell their house to get something smaller", and the list goes on and on and on and on.... On one hand, I sometimes feel closed off because our family and support system is tiny (2 aunts is all), but on the other hand, I only have 2 other people telling me to get some sleep. No matter what the situation, managing the "do gooders" in our life is a full-time job in and of itself! Your support for your mom and dad is so similar to mine that it is scary. We are 2 peas in a pod and I am thankful for you every day. Take care, my friend, (or don't, do what you need to!)

Kleo- Glad to see you have kept your sense of humor through all of this...Tomm-Tom (I truly lol'd over that!)

Great news Charles!

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

Tom, I am sorry for the loss of your friend. It sounds like she lived a life we all should strive for. That being said, thank you for this. Living a full life DESPITE lung cancer isn't something I would have ever accepted 1 year ago for my mom. Accepting that we will likely only ever hear "Your cancer is stable" and never hear "There is no evidence of disease" has also been hard for me to except. But hearing stories like this and meeting wonderful folks at the HOPE Summit has helped me to begin to come to acceptance. My mom and I's daily phone conversations have turned from lengthy discussions about lung cancer to what creation did she work on or what kind of shenanigan did my dad cause. It's a much needed break for the both of us. I appreciate hearing how 2 tenured lung cancer survivors talked about all things "life" instead of all things "lung cancer". So once again, thank you. Your post put a smile on my face and solidified that it is okay to go on with life. Take Care, Steff

Susan, I often think about how things might be if the roles were reversed and I was the cancer patient, not my mom. I always wish that I could be the one who had gotten cancer, not my mom. She has enough to deal with with all of her other medical issues and taking care of my dad. But then I really think that my mom would probably worry even more if her only child were the one with cancer. I couldn't even imagine having to tell my parents that I have cancer. You are a brave woman to not only confront your battle head on, but also to try to soften the blow for your parents. And it sounds like you are lucky to have Neil! I have a very small family too - no siblings or children either. It's pretty much just my parents and I (my husband isn't as supportive!). I understand the stress that comes with a small family unit and how we try to soften the blow for any type of bad news. I am so sorry you are having to battle this recurrence and I am as equally as sorry that you had the stress of sharing your news with your parents. Sometimes I don't know which is worse. I hope that your treatment begins quickly so you can get this bout done and over with! I am thinking of you and your family, sending hugs and awaiting to start my happy dance for you. Take Care, Steff

Hi Susan I'm very sorry to hear about your diagnosis. A cancer diagnosis is a punch in the gut for everyone involved. So many unanswered questions and so many unknowns. You are in good company here. There are many late stage lung cancer survivors who will be introducing themselves soon. The diagnosis, staging, and other various testing always seem to take forever. That was the worst part in dealing with my mom's diagnosis - the waiting. I am glad you found this site. The Lungevity site has a lot of helpful, easy-to-read info that most of us here have benefited from. We are here to help you navigate through this challenging time in your life. Take Care, Steff

Susan, I read your post a few days ago and it really hit me, but I didn't have the words or thoughts of how I wanted to reply since I am not the cancer survivor and don't want to make everything about me. But I too, as a care advocate for my mom, feel the nagging thoughts in my everyday activities. And honestly, I think you all do so much better in dealing with those nagging thoughts than I do. I will use my mom as an example...I speak to her everyday via phone. Yesterday happened to be the first day we did not talk about cancer, how she is feeling, upcoming appointments, etc for nearly a year. I had decided after reading your post that I would not be the one to bring up cancer in our phone visits unless something major was going on (I really had to look at what I consider to be MAJOR because I think EVERYTHING is MAJOR!!!). I realized that I was probably putting my nagging thoughts onto her and that is the last thing she needs. And voila, when I did not bring up cancer she did not either! So, although I cannot help with any "words of wisdom" in regard to dealing with nagging thoughts (since I totally suck at it!!!), I want to let you know that you are not alone. And I also want to say thank you...although I am sure it wasn't your intention, you helped me to realize how I can be unintentionally placing my baggage onto my mom when I really try hard not to. I hope that those nagging thoughts lessen for you and for all survivors. Thanks for sharing your thoughts. Take Care, Steff

Doing a happy dance for you today, Susan. 💃

Congrats Tom! You are an inspiration for us all!

Simeon, Lobectomies are a common treatment for cancer, the fact that the lymph nodes were clear of cancer is really good news!! My mom had a right, upper lobectomy as well, she was 61 years old at the time and has multiple other health issues. Her recovery from the surgery was a long road, but she recovered fully and had been breathing better than she had in a long time because most of the COPD that she had was in the lobe they removed. As far as being active to help recovery, "active" will probably look very different for her for awhile. Her body needs to adjust to not only having a portion of a major organ removed, but also will learn how to deal with having less lung capacity - for many people, they do just fine with a lobe or entire side of a lung removed. She just needs to get used to it. She also just went through major surgery, so there will be pain and loss of energy just from the surgery. She also may be affected by the infection, so be patient with her. Be sure that if she isn't up and moving much that she is doing any breathing "exercises" that her doc suggested or that were being done while in the hospital - this will help from getting pneumonia. If she get's a tiny bit better every day, that's moving in a positive direction...it's just a long process. Helpless is a feeling we all feel whether we are the patient or the caregiver. Every. Single. Thing. is taken out of our control when we are dealing with cancer, we've all felt as you do and many of us still feel completely helpless. Will your girlfriend be receiving any type of treatment for the cancer in her breast?

Don't worry Simeon, we will get any message that you post on these forums. Many of us use the "Unread Content" button on the forum's main page. So no matter what topic you post in, we will see your message. We are in all different time zones throughout the world, so there may be a short delay in someone responding to you, but we will respond. Hope all is okay.

Howdy Si, I too am a caregiver - for my mother who is currently battling NSCLC. Please feel free to reach out if you have questions, need to vent, or just need some support. We are here for you. Take Care, Steff

Karen, Although my mom has a different story to begin with, she is now taking keytruda as your mom has started to. Here is her story... Since my mom's cancer recurrence is unable to be surgically removed, she is receiving chemo + keytruda. Since your mom has had such a tough time with chemo, that is likely why she isn't receiving the combo right now. The chemo this time is really kicking my mom's butt too - severe fatigue and flu-like symptoms and anemia. She didn't have any trouble last time with chemo. I wasn't happy to hear about my mom receiving immunotherapy versus the original treatment types at first. But now that I have done more research about immunotherapy / keytruda I am happy that she has this treatment option available to her. In fact if her original diagnosis a few years ago would have been today she would have received keytruda as a first-line treatment because it is doing such wonderful things. With Keytruda, your mom may have the same benefits of chemotherapy without the harsh side effects, that can result in the mass shrinking so that she can have it radiated. And as long as keytruda is working, she can stay on the drug forever. My aunt has been on keyyruda for 2 years, she receives the drug for advanced stage lymphoma. She is in her mid-sixties and is a full-time third grade teacher. The only side effect that she has is skin pigmentation changes and fatigue. But the fatigue is not enough to keep her from chasing after third-graders all day. My mom just finished her 5th chemo plus keytruda treatment. The side effects that she has battled so far are fatigue, but that is likely from chemo, and skin pigment changes which have been no big deal. And so far the treatment is working, her tumor has shrunk after four treatment Cycles. I am happy to hear that your mom has you and your sister relatively close. I live a little over an hour away from my mom and when I am able to visit or take her to treatments it makes all the difference in the world. And although your mom's battle has changed its course in treatment, don't give up. There are so many different treatment options out there now for your mom's type of cancer. I am so very sorry you and your family are having to endure this battle but moms are tough and so are daughters. I'm glad you found this site and have posted...this site was extremely helpful to me and the forums are wonderful. Take care, Steff