Caregive for Mom with Stage IV NSCLC Adenocarcinoma

[IrishAuburn485]

HI All,

To be honest, I'm not sure exactly what I"m doing here or what I'm seeking from this site other than a bit of comfort and maybe to read others stories and share in the community of people who are also walking similar/the same path. Maybe someone to validate my feelings occasionally as I oscillate between sadness, happiness, intense anger, sentimentality and all the feelings in between. 

I come from a long history of cancers (not all lung) on my Mom's side of the family. My Mom is one of eight and of those eight two are living (my Mom and her brother). Of those that have passed, 4 out of 6 have died from cancer.  The oldest of her siblings was only 73.  Out of the 4, 3 of them didn't make it out of 6 months post diagnosis and only one made it to treatmand ent. 

My Mom started smoking when she was 11 years old.  When she was diagnosed with COPD in 2010, I begged her to quit and stop/slow the progression as much as possible. I, too, was a smoker at the time and we had already lost my two of my uncles to cancer.  I didn't want her to get sick.  As a measure of solidarity, I quit smoking on her birthday that year and I've now been smoke free for 7 years, except for two single cigarettes over the course of that time.  I'd been predicting my Mom's future for years but could not get her to quit smoking.

On December 8, 2016 I was in the UK traveling on business. My Mom, who's family nickname is Tuffy, had been struggling with what she thought was pneumonia for a while. Getting her to go to the doctor at the time was no small feat of will and she kept telling us all she was fine even though she was having pain.  The pain got severe enough in her chest/shoulder/arm that she thought she might be having a heart attack (although possibly the longest heart attack on record) and went to the doctor while I was away.  She called me while I was away to tell me she was going.  She then called me later to tell me she did have pneumonia, but they found a mass in her lung and that they were going to send her for a biopsy.  I was a wreck. I was nearly 3,500 miles away and felt totally helpless and deep in the pit of my stomach I knew what the news would be. I can remember calling my last surviving uncle that night (after having more wines than I should with colleagues at a couple of pubs) and just sobbing that I didn't want to lose my Mom and I didn't know how I was going to be strong enough to go through this with her. I completely came unraveled. 

My Mom had the biopsy and I traveled back a few short days later on December 10, 2016.  On December 15, 2016  her pulmonologist confirms that it is in fact cancer. Adenocarcinoma NSC.  He wants her to come back for a test to determine her lung capacity and sends her to a top thoracic in the area.  The lung capacity test shows that she's not a good candidate for surgery. She also can't have surgery because she is still smoking and they are concerned the cancer has spread to the chest wall and its in a lymph node near her heart.  He refers her to see an oncologist for treatment options. We have a great one local we know from another family members cancer journey and get an appointment with her. 

Fast forward to our appointment with the oncologist in mid January.  She stages my Mom at about a Stage II MAYBE Stage III.  The oncologist is ready to start her for treatment in the coming weeks and sends her for a precautionary brain scan since the PET scan doesn't cover this. The scan was done on January 23rd. On January 24th, I received a phone call that they found something in my Mom's brain and we needed to go immediately to the neurosurgeon for evaluation.  The news is promising in that it's one tumor and a candidate for surgery. My Mom is admitted to the ER that night and has brain surgery the next morning. She does fantastic. All her doctors can't get over how well she did and how she didn't show any symptoms of the tumor prior to the scan.   Immediately, my Mom is now a Stage IV lung cancer patient.

After recovering for a bit, she starts chemo and radiation. Chemo is carboplatin and pemetrexed. The Neulasta makes my Mom violently ill so they have to switch her to neupogen so she can sustain treatment. During this, Mom goes through genetic testing to determine the mutations she displays. None of them are available for targeted therapies. At this point though, I don't know what genetic mutation she has.  She also goes in for a Cyberknife treatment on the area treated on her brain. 

Mom finished chemo on June 8th.  She went for her follow-up PET scan on July 15th.  On July 19th we are informed that Mom is in remission. No active cancer, all post treatment disease. We are elated and I book our trip to Florida that I promised I would take her on once she finished treatment and beat this (my mom from the start said she wouldn't let her take her down. She was fighting - and she did. Not once did she complain or look for sympathy.  She just did everything with such grace and strength I could be nothing but amazed. I was pretty convinced if it were me I'd be in a pile on the floor somewhere).  We went on that trip the first week of October of this year and it made some of the best and happiest memories I have with my Mom in my adult life. We had the most fun we've had in a long time. We even went to Disney and met Mickey Mouse (something I hadn't done in my childhood). She's still smoking. She's also had 2 follow-up brain scans since surgery and Cyberknife and everything looks great (side note: her neurosurgeon is probably the best doctor aside from her oncologist I've ever encountered in my life.  I literally could just hug this man every time I see him)

Towards the end of the trip and when we got back, she started to feel sick. She kept saying it was just a cold. By mid October, pain had returned.  She went to her PCP, who said she just had a respiratory infection and put her on antibiotics. The antibiotics don't help. At her follow up with her oncologist to get the appointment for her next PET Scan, the oncologist orders an Xray. The results come back that it looks like pneumonia in the lung. She follows up again with her PCP who gets another Xray and then tells her that its just bronchitis and puts her on Levaquan.  She has a massive negative reaction, calls the oncologist who then prescribes Doxycycline. She does much better on that but the pain isn't going away. According to her PCP, there's nothing in her lung except the bronchitis. She went in for her PET scan on Saturday, November 18th.

We got the results on Monday and it shows that her cancer has returned. Two masses in her left lung along with multiple nodules in both. Thankfully it's spread nowhere else. We met with the oncologist yesterday who wants Mom to go through a second line treatment of chemotherapy with Carboplatin, Abraxane and Avastin. 3 weeks on, 1 week off for 3 months. She said her third line treatment would be some sort of immunotherapy although they are not sure how effect it will be since she doesn't have PDL-1.  I did find out during this appointment that her genetic mutation is KRAS. The "mama bear" daughter in me who wants to know everything (boy am I naive) and has an eternal thirst for knowledge made the mistake of looking it up last night around 11 pm EST. Needless to say I didn't sleep very well. I need to take my own advice as I always tell people "Google is not your friend". 

My Mom has said she is finally going to quit smoking but I don't have much faith. Not that at this point it's going to stop anything but it certainly isn't going to hurt. I'm a whole whirlwind of emotions - I'm mad at her that she is putting smoking before her family and her health, I'm sad that she has to fight again. I'm proud of her for fighting as hard as she had and not flinching when they told her she'd have to go back through treatment. I'm worried for the future.

My sister lives with her with her two kids and significant other as well as my Dad. I'm single still with no children and that weighs heavily on my mind as well. 

I constantly battle with myself feeling like I should be doing more. There's a part of me that wants to find some way to volunteer at a local cancer center or organize a charity event for cancer research.  I spend time wanting to scream and wanting to just literally never be away from my Mom for another minute while she's here. 

This seemed like a safe place to explore and look for support from people who are going through the same thing. I'm sorry for the lengthy post. Things are still very raw for me. 

I look forward to being a part of the community here. 

Maigan

 

 

 

[BridgetO]

Hi Maigan,

Welcome here! This is a good place to get infomation and support. I'm sure you'll get replies from other caregivers who've been through this too. Well wishes to you and your mom and hang in there. 

Bridget O

[LaurenH]

Hi, Maigan,

Welcome to LCSC. I'm sorry you and your family are going through a difficult time. You've come to the right place to find all of the things you're looking for. The members of this community have extensive experience as lung cancer survivors, caregivers, and advocates, and we're all here to connect and help each other navigate this path. Thank you for sharing the details of your mom's diagnosis and treatment thus far. It sounds like you and your sister and your dad are a strong support system. I'm happy that you've been able to make some extra special memories lately!

I'm confident that several of our active members will respond to your post soon. I'll reach out and encourage people to say hello and introduce themselves. In the meantime, please feel free to explore the discussion boards and blogs and join in any conversation that resonates with you. This is a helpful place to start: 

 

I am also happy to provide you with additional resources or information about LUNGevity's Support Program. We are here for you!

With gratitude,

Lauren
--
Digital Community Manager
LUNGevity Foundation

[Tom Galli]

Maigan,

I am so very sorry to learn of your mother's plight.  I know how disquieting lung cancer is for both the survivor and family members and unfortunately, I know first hand of lung cancer's persistence.  I had four recurrences after treatment producing no evidence of disease or NED.  NED, by the way, substitutes for remission and cure.  I'm nearing 14 years of survival and my oncologist is still very reluctant to use the word cure.  

You mentioned you are searching for an opportunity to do more, perhaps more for your mother.  Here is an idea.  Become her lung cancer tutor and rather than consulting Dr. Google, try Lung Cancer 101 on as a better resource.  Here is the link.  Knowledge is power and my wife's question about an emerging treatment likely saved my life.  

And, I wouldn't rule out Immunotherapy as a treatment method.  As I understand the current state, the Immunotherapy drug Keytruda is now being used in combination with conventional chemotherapy to treat NSCLC regardless of PDL-1 expression.  So, that is a question for your mother's doctors in terms of possible treatments.  

Welcome here.  Look around and when you do, you'll note many of us have lengthy survival tenure.  

Stay the course.

Tom

[Steff]

Maigan,

As a fellow caregiver for my mother, the feeling of "I need to do more" and "I need to spend every waking moment with her" are very familiar to me. Everything about cancer sucks, there's no other way to say it. 

I am happy you found this site.  I became a member not too long ago.  When my mom was diagnosed in July with her recurrence of NSCLC, I too, completely lost it.  My mom already had a feeling her lung cancer was back so she was not surprised and was completely stoic in her reaction, as many moms are.  And even though my mom's treatment is going okay, I still lose my mind from time to time.  This site helped me to air my concerns, find hope, and get better information than from Google.  The members are very supportive and respond timely.  Their experiences have helped me to find hope.  You don't see many stories of lung cancer survival through Google searches, but flesh and blood evidence of survival is here on this site - it looks like you have already met a few warriors.  We are here for you. We will hear your questions, concerns, and rants. We will respond the best way we can.

If I could offer 1 piece of advice, please don't spend the precious time with your mom being angry over her smoking.  As you likely know, the power of the "almighty cigarette" (that's what my mom calls it) is strong.  At the end of the day, she is not choosing a cigarette over you.  She is simply choosing behaviors that help make the bad feelings that come with withdrawal lessen.  Life is too short.

Finally, you mentioned PD-L1 in your post, so I am assuming that the immunotherapy that is being thought about is Keytruda.  My mom is currently on Keytruda and Chemo.  I regularly update any side effects and issues she is having with her treatment.  You can find my post here: 

I hope that you can find some hope and peace on this site and please remember that we are here for you.

Take Care, 

Steff

[CIndy0121]

Maigan,

I would also encourage you to pursue the immunotherapy options with her oncologist. Many former smokers have the KRAS mutation and do respond to immunotherapy because their TMB (tumor mutational burden) is high from exposure to the high number of carcinogens...more antigens expressed for the immune system to find. Keytruda is being used alone (with >50% PD-L1) as a first line, but also in combination with chemotherapy regardless of PD-L1 expression. Also, ask him about sequencing. I think some studies have shown that a chemo/immunotherapy/chemo sequence has increased efficacy for some. I had platinum, then maintenance, then Nivolumab. There is no PD-L1 requirement for Nivolumab although it has been shown to be a marker for response to immunotherapy. The number of clinical trials for different combinations, sequence, CTLA-4, immune checkpoint inhibitors, CAR-T procedures, etc. has gone from about 200 to almost 800, so there is ongoing research and new discoveries, clinical data and FDA approvals. Always remain hopeful even through the anxiety, sadness, fear.

cindy

[IrishAuburn485]

Hi All! Thanks so much for your responses. It's comforting to know there are so many going through the experience. A couple of notes as clearly my post was written in a flurry of emotion. I do use Google to do some searches but I read mostly medical articles and use sites such as Lung Cancer 101 and other sites dedicated to the disease and this specific type of cancer have been a saving grace for me. I am also aware that immunotherapy has proven effective in cases where there is no PDL-1 expression, I just wasn't aware of what the KRAS mutation was prior to learning she had it yesterday so was trying to educate myself. I try to stay as knowledgeable as possible on treatment options and what is up and coming so I can ask the right questions and be an advocate for her during her battle. Her oncologist certainly hasn't ruled our immunotherapy as a possible treatment option. She's also of the mindset that it can elicit wonderful results in patients with no PDL-1 expression and is keeping it on the table as a third line option. She just feels at this time we might get better response from a second round of chemo to alleviate my Mom's pain and get things back to a manageable level. Thanks Steff for the advice regarding the anger. I know that deep down but sometimes it's so hard.  It's difficult for me as an ex-smoker to fully understand it because it was such an easy decision for me to give it up when I saw the effect on family members and my Mom. I am mostly just grateful to still have her and thankful for all the moments I have. I go through spectrums of emotions as I'm sure we all do on all walks of this journey. I don't take that anger out on her I think I'm more just mad at the possibility of losing her than I am at her.  It's definitely a journey and I'm learning as I go. I'm so grateful just for the opportunity to share and have the support here. Thanks all so much for your replies so far.

[IrishAuburn485]

@BridgetO - Thank you so much for the kind words. I'm grateful to have a community of people who are experiencing the same thing.

@LaurenH I'll definitely be using the resources and getting active on the site. 

@Tom Galli It is so refreshing to hear of a 14 year survivor. You are right, Google (and not just Google at that) certainly don't show the flesh and blood reality of survivorship. It's refreshing ot hear that there is hope of that.  As you noted, Google is definitely not the most reliable place for information but it does help me in my initial surges. I've been using Lung Cancer 101 and Lungevity in general ("offline" so to speak and not as a member) for a while now (since when Mom was first diagnosed).  As I said in my original post, I tell people all the time "Google is not your friend" - I just sometimes don't always listen to my own advice. Also - its not helpful to start doing research on advanced stage lung cancers at 11 pm at night.  It's not exactly a peaceful sleep inducer ;-).  I am going to spend some time reading your story and doing some more research here. Thanks so much for reaching out

@Steff It's refreshing to hear from a caregiver who is experiencing the same emotions. It means a lot.  This is a crazy journey we are on.  It's harder than it is easy, but support, friendships, family and love make it easier than it could be without any of that. I am taking some time to read through your post to see all the responses and how everything is going. Best of luck to you and your Mom on this journey.  I'm happy to be a sounding board if you ever need it

@CIndy0121 Its so encouraging to see all the clinical trials ongoing and the development of immunotherapy and targeted therapies in general have been such a huge leap in cancer treatment.  You seem very knowledgeable and as though you've done a lot of your own independent research and deep dived into the options. I spend as much time as I can trying to learn as much as I can and seeing what's out there as much as possible. Thanks for all the insight and will definitely keep all these things in mind as we progress in treatment. 

Sorry, I wanted to post to everyone individually in my last post but was on my cell phone and it was proving challenging I really do appreciate all of your support, information and just the reaching out.  It means a lot!