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Mom Just Diagnosed with Stage IVa NSCLC Adenocarinoma, Mets to Plueral Lining, Waiting For Treatment Plan


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Hi Everyone, 

Thank you already to everyone who has contributed to this site. I have learned a lot already regarding my Mom's diagnosis but was struggling finding specifics on what to expect with metastasis to the pleural lining. 

My Mom is 75 and fell down the stairs last October and fractured her spine. Due to all the tests being run for her spine, a scan showed a possible mass in her left lung. She didn't tell me this until February when she was ready to focus on this after relearning how to walk and be independent from the fall. 

A PET scan showed no activity anywhere else but the left lung, so a lobectomy was scheduled for early March but when the doctor went in, saw the tumor had spread to the pleural lining. There was also fluid buildup which they had to drain, so surgery was off the table and an appointment with an oncologist was scheduled. 

We met the oncologist last week and he said she had stage 4a adenocarcinoma with the possibility of 4b once she gets a brain MRI to verify that the cancer hasn't spread there. 

We are still waiting for the biomarker test results but he said already that the likely treatment would be a combination of chemo therapy and immunotherapy. No specific prognosis was given as the doctor said there are a range of outcomes but he explained how successful recent treatments have been extending both the quantity and quality of life for patients and that he thought my Mom was likely in that category given that she didn't have other co-morbidities and seemed to have a low cancer burden. 

I am wondering if he is seemingly being too optimistic and also wondering what to expect. I have been struggling to find information about lung cancer spreading to the pleural lining except finding the absolute worse prognosis for this type of cancer metatastisization. Additionally, I've seen on forums that sometimes there are different biomarker tests and realize I don't know which ones should be run? 

I guess I should also mention that I'm an only child so I'm trying to figure out a lot of this for my Mom on my own and being the person to not only keep her spirits up but also parlay information to concerned family members as she can't deal with it so any guidance or advice is generally appreciated. 

 

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Hi Emily,

I grew up across the river in Jersey, my parents are around the same age as your Mom.  In 2018, I was diagnosed with Stage IVc a comprehensive biomarker test revealed the ALK mutation.  
 

My mother had a gynecological cancer, initially diagnosed at at stage 1 and five years later the disease progressed directly to stage IV.   I’m not writing this as part of a doom and gloom because I want people to make informed decisions for their parents treatment.   Like me my mother had a mutation and targeted therapy along with immunotherapy, Keytruda was highly recommended.  Keytruda is commonly used for the treatment of lung cancer. 
 

Diagnosis is not prognosis, and Dr Google is the worst place to obtain information about prognosis.  The treatment plan development really comes down to getting a second opinion once the biomarker testing comes back.  Lung cancer is very specialized and in the City it’s possible to find a Thoracic Oncologist that specializes in specific biomarkers (and they may not be at MSK). 
 

What I learned from my mother’s experience was the Keytruda was more toxic than the actual cancer itself. Her oncologist was very enthusiastic about the treatment plan.  One of the questions I didn’t ask and really wish I did ask is a hard one- “what happens if we don’t elect any treatment?”  
 

My mother had fatal side effects from Keytruda just days before her 78th birthday.  If we had elected for no treatment, her quality of life would have been much better and in fact she would have lived longer better because her cancer was slow growing.  Something similar happened to one of my lung cancer support group members with targeted therapy.  Safety and efficacy are not things that doctors talk to adult children about and they need to start doing so.  
 

Cancer therapies are dosed for a one size fits all without consideration for the elderly. It’s also important to ask your Mom about what her wishes are.  I’m a definite helicopter child and my Mom made it pretty clear she wanted to drive the bus so I stepped in when she asked me to.  Sometimes that was hard however my mother’s oncologist and I had a good relationship.   I had the docs cell phone number and knew I could call at anytime. 
 

I know all of this comes as quite a shock and there’s so much to absorb.  I know you love your mother and want the best for her. We’re here to support you through this roller coaster.  Take it one day at a time.  It’s possible to live with stage IV lung cancer for years and finding the right treatment team, which includes a palliative care physician for the management of side effects from day one  is the best course of action.   Palliative care is often confused with hospice-  having a doctor to manage side effects is a game changer.  The oncologists job is pretty much developing the treatment plan and they don’t know much about how to manage side effects which I found surprising.  You will also want to track down the lung cancer social worker (another closely guarded secret you must ask for) to find out what services your Mom can benefit from.  It’s hard to DIY resources and the social workers can really be helpful.  
 

Michelle

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Thank you Michelle! This is very good to consider and I'm going to make sure I ask about immunotherapy on an older patient and what will happen if we do nothing. 

I realize I didn't mention that even though I'm in Brooklyn, she is in Cleveland but there seem to be two good cancer centers there and she is currently at one of them. Depending on what is said next though I will look into going to the other for a second opinion. 

They also have mentioned the social workers, I can't remember if it was volunteered automatically or if it was because I was asking lots of questions. Do you have a recommendation for how soon the social workers should be involved? 

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Now is the time to engage the social worker-the sooner the better particularly since you are out of state (same for me, I live in KS).   There are some excellent cancer centers in OH, unfortunately due to high disease prevalence.  “Mutant cancers” have specialists in unexpected cities.  Go2Foundation is another excellent resource to tap into.  They have a great step by step guide I wish we could have had back in 2018. 
 

It sounds like your Mom is independent minded as was my mother- there’s a lot of “stuff” my mother never told me about her symptoms as I suppose their generation was trained not to complain.  Start coaching your Mom now as best you can that when it comes to any kind of treatment it’s not complaining but informing.  The doctors really do want to know about every ache & pain. 

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Hi Emily,

Doctors don't lie and wouldn't give patients false hope. There have been so many advances in treatment for lung cancer. The specialist who diagnosed my mum said that 10/15 years ago being diagnosed with inoperable stage 3 cancer would be very bad news but nowadays things have changed and there's been a lot of advances in treatments. 

I'm sorry that your mom reacted badly to Keytruda and died from the bad effects Rower Michelle- immunotherapy does have a lot of side effects but for many people it can be a game changer. For a rare few immunotherapy can cause fatal side effects but it's not common. I don't want to put people off immunotherapy when it can be a life saving treatment for many. Immunotherapy is not effective for all cancers but for lung cancer it's been a game changer.

My mum had durvalumab (infimzi)- another immunotherapy drug and she was very scared to have it because of side effects but I persuaded her in the end. Yes she had a lot of side effects but two years later she's cancer free (she had a scan last week- I'm hoping that she's still NED)! 

If the immunotherapy is too much, they can always stop it. My mum was meant to have 12 infusions but they said that 8 was enough especially as she had a lot of side effects. They also monitor you very closely when you have immunotherapy. 

Keep us updated and be positive ☺️

 

 

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Also stay off Google. Most of the lung cancer statistics and sites are very outdated and don't take into account new treatments. The only sites that I would rely on are those that talk about the impact of latest treatments.

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Thank you so much for this feedback. I am planning on going back at least once a week for several months as New York luckily has paid family leave. Catlady, I was wondering, did you find your mom's side effects were worse immediately after treatment or more a week or so after? I know I'll likely have to adjust regardless but just trying to plan my schedule so I can be with her and support her (she also luckily has an extremely supportive boyfriend). 

 

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  • 2 weeks later...

Hi Emily, sorry for my late response. I've been very unwell and haven't really been active on here. 

Has your mum started treatment yet? My mum's side effects weren't immediate with immunotherapy, they kind of accumulated and built up unlike with chemo where side effects are pretty much instant. 

Side effects on cancer treatment can be tough but everyone is different and in my eyes, it's worth it if there's a chance that the treatment will be effective and kill the cancer and keep it away. 

Let me know if you have any other questions or if you need support. Do keep us posted on here.

Monica x

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Hi Catlady. No worries, we all need to take care of ourselves. Treatment hasn't started yet but we're having a follow up appointment today with the doctor to get the treatment plan. Will keep you posted. My mom is anxious but feeling positive for now. I really appreciate all the information from everyone as it helps me to distill things for her so she's not just reading the worst case scenarios but also being realistic. Will keep everyone posted. 

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Well...it looks like immunotherapy is off the table anyway. she has the EGFR exon 21 mutation so the doctor is recommending tagrisso, also no brain mets! There is also the possibility of a clinical trial which would add on avastin every 3 weeks with the tagrisso but she's not sure if she wants to participate. will start hopping on the specific mutation forums. thanks again! 

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