My mom

[MyTwinsNana]

Wow, really grateful to find this community. My mom is 74 years old and was diagnosed with stage 4 lung cancer about a year ago. She’s been on targeted therapy and we’re now waiting for a biopsy and results to see if chemo or another treatment is the right next step. I’m happy to see some posts about chemo effects being more manageable now than in the past. 
I’m 34 years old with 3yr old twins and 2 stepsons, and having such a tough time managing being there for my mom and dad emotionally, whilst also meeting all the needs of my children. And just so sad to have to go through this . Sad that my kids see me crying and sad and tired and mad. Trying to reach out to resources more and more. I also live across the country from my mom, we both live in rural (beautiful) areas but super far from airports, and the plane ride to see each other is 4hrs. So also struggling with wanting to be there for her and not really being able to in the ways I want to be.  

[edivebuddy]

Wow sorry this has been in Limbo for a week.  This forum acts extremely weird. I just got an email notification you posted.

I see you're in Colorado which would put your mom in Miami or the East Coast.  Being a 2nd line of treatment it becomes more important to find access to more thorough treatments can be very important.  NCCN designated cancer centers and large teaching institutions have access to many clinical trials not available elsewhere. Even the diagnostic facilities and treatment equipment can be much more advanced.

Your parents will understand your situation as they have lived it as well.  Hope they have a community around them that can lend a hand.  At many cancer centers they have services that can help or information on local services available to patients and care givers.  After taking care of a loved one with cancer,the caregivers often forget to take care of themselves as well.

I am not on a targeted treatment.  I've done chemotherapy And chemotherapies plus immunotherapy.  I've been on on immunotherapy alone for 3.5 years.  Stage IVB 0% 2 year prognosis.  That shows you how fast cancer treatments are advancing.

Targeted therapies often have multiple drug's that may help. With many living years developing resistance to one and needing to move on to another.  Hopefully your mom is in the same boat.  Do you know what mutations she has and her current treatment?

 

 

 

[LouT]

Welcome Mom.  
edivebuddy has already shared some good data.  When you posted you put a date in your heading of 7/22.  But it appears that you actually posted today.  Can you confirm the day you posted for me?
Thanks,

Lou

[Livin Life]

I too hope your posting date was more recent than the 22nd.  I looked on the site yesterday for new posts and didn't see any.  then seeing yours this morning.  Sending support and healing energy across the miles.  You can only do what you can do regarding helping your parents given distance and your own family responsibilities - let alone fitting you in a little here and there (which is also important).  Edive is a miracle so speaks accurately about advances in treatment.  Hoping your mom can get to a national cancer center even if for consult to then do actual treatments nearer her home.

[LUNGevityKristi]

Good morning, all. 

@MyTwinsNana: please check your email, I look forward to connecting with you, 

Kristi Griffith, Survivorship Navigator 

 

[MyTwinsNana]

Hi everyone, thank you all very much for your kind and thoughtful replies. I did in fact originally post on the 22nd but it’s ok, I’ve received quite a few apologies about the delay, and truly, it’s ok. 
Thank you for all the time and care and support. 
My mom is being treated at Memorial Sloan Kettering in NYC which I believe is one of the best places she can be for treatment. So she’s extremely lucky in that regard. She does live about 3hrs from there so it is definitely a burden on her and my dad to travel there as often as they have been (lately it seems to be every 3 wks or so, and with the possibility of more intensive treatment she may need to be away from her peaceful rural home and in the crowded city much more) BUT she’s lucky enough to have a sister they can stay with in the NYC area when they need to. And she’s lucky again for the doctors there and all they provide. It’s a major quality of life adjustment for her and my dad because even tho they are in their early 70s they were incredibly healthy, vegan hikers until the diagnosis. So having to be dependent on treatments and doctors is emotionally hard on them. 
Since I last posted I reached out to the counseling department at MSK and I’m waiting to hear back from them. I’m hoping that meeting with them can help us all manage the emotional weight of what we’re all going through. 
As an aside, these forums have definitely helped me to have more information, and positive, good information that has eased the mental weight as well. I had such a visceral fear of the word “chemo” and after reading some posts here it seems that there are still a lot of misconceptions about where chemo is at today. And as well misconceptions about how long you can live with stage 4 lung cancer. I feel more hopeful from reading the forum posts, so thank you. 
I’ve attended the telehealth meetings with my mom’s oncologist for the last 5months or so. At our most recent meeting about 2 weeks ago my mom asked the doctor about palliative care and he said that while that is always something to keep in mind with lung cancer, he doesn’t see it as a top priority right now. In all honesty, it’s sometimes hard to believe the doctor when we’re very explicitly talking about her death because of course he has reason to somewhat soften the reality of the situation and also because of what the internet can tell you about this disease. But again, I think there are a lot of misconceptions out there and especially on the internet, and after reading what many of you have had to say I now do have good faith and better understanding of her doctor’s statement. But yes, still the words of “chemo” and “cancer” just carry this visceral fear with them that is new in my life and something I’m trying to deal with. I’m hopeful to talk to the counseling center and I’ve also looked into the idea of working with an end-of-life doula. We shall see. 
Lastly! As far as my mom’s actual diagnosis/mutations for those who have asked- she does have the EGFR mutation. She had an initial radiation treatment for the tumors in the brain and she has been on Tagrisso for a little over a year. The latest scans indicate that the cancer is becoming resistant to the Tagrisso so we’re now waiting on biopsy results (we’ll have answers in about a month) to see if there’s a biomarker on a tumor in the liver- if so there is an apparent treatment for that but we haven’t yet discussed what that would be, and if not then the doctor’s recommendation is chemo and an IV treatment of which I don’t know the name. 

So we’re navigating it all and maybe I can convince my dad to get on this site because he tends towards pessimism and neuroticism (my opinions) and those stress levels can only aggravate the disease and simply aren’t helpful. Sigh. 

Ok, we are moving this week, I must sign off and pack and be productive while I have a few hours with the kids with the babysitter. 
Thank you community for all your love and support. Sending the very very very best and hugs to each and every one of you. 

[edivebuddy]

MSK is definitely a good institution.    Many consider them  #2 in the country after the world #1 MD Anderson.  I don't know what's next for your mother, but every treatment has a chance .  Chemotherapy alone made my liver metastasis disappear.  While on immune and chemotherapy I achieved full remission.  Immunotherapy is not generally given to EGFR mutated NSCLC it can be and it's being tried in combination with other targeted drugs so even that may be on the table.

 

Palliative care is is to relieve the suffering of patients and their families.  Palliative care is not hospice or end of life care.  It's focused on quality of life and should be included in every cancer patients treatment plan.  Some just need more specialized care team members than others. An aspirin is palliative as is a pain management neurologist or a grief counselor.  palliative is also available for the care giver which is often overlooked and usually the person with the most stress.  My wife has taken advantage of counseling.

 

 

I'm living proof that even end stage lung cancer can be beaten back.  

While not the most well written and not complete, I keep busy, it does have the beginning of my story here .  7 posts so far covers my first 5 months 

 

 

[Karen_L]

@MyTwinsNana Do you have any more specific information about the EGFR mutation she has? Different mutations have very different treatment paths. I have two mutations-- S768i and L8585R, on exons 20 and 21. One of these is not well-researched, so I take care when learning about treatment options. I would advise a big deep breath until you know the specific sequencing. 

Medically planning for her death feels premature to me. I have a friend who lived with Stage 4 lung cancer for 16+ years, with good quality of life in between some treatments. My husband and I are pretty proactive when it comes to wills, medical power of attorney, and advance directives. We reviewed all that when I got diagnosed, then we put the focus on living well: bicycling trips, hiking, etc. (FYI, I'm 67 and very active-- distance cycling, etc.) 

Once you know your mother's mutations and hear about treatment options, the palliative care piece becomes important. In the spirit of being an effective advocate, you and/or your mother could see who is on the palliative care team, read up on them and the process of getting in to see them, how the the referral wait usually is, etc. You could probably do this all online. If you call, it is perfectly appropriate to say you are doing preliminary research and plan to work closely with her doctor, blah blah blah.

Sometimes it takes some time to get that hooked up, but until you know the details of treatment, there's not really any point-- there wouldn't be anything to talk about. 

Please find some support for yourself. You cannot be responsible for your mother's care at a distance. This cancer is hard. You, too, deserve to live richly and fully as you cope with your mother's situation. Because the people around you are right there, your relationships seem like a foundational part of living well. It's hard to do that without taking care of yourself. Coping with cancer grief is really, really important, and your own counselor can support *you* directly. I see someone weekly and it has made it possible for me to deal with deep feelings and then go back to my family without being a total Debbie Downer.

We patients all learn to balance the every-present awareness of our cancer with the philosophy of living well; you can do it too, no matter how impossible it seems right now. 

I will keep you in my thoughts.