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Stage 4 Adenocarcinoma Lung Cancer

Stage 4 Adenocarcinoma Lung Cancer

Posted by User1987 on Jul 20, 2020 10:22 pm

Hi Everyone,

My mom is the strongest person I know. She found out today that she has stage 4 adenocarcinoma that has spread to her femur and hip bones. The doctor said surgery would not be viable option for her but instead the oncology team would be contacting her with regards to possible chemo or immunotherapy. He mentioned she had a mutation that was a good prognosis for immunotherapy but he didn’t specify which one. I am finding it extremely difficult to be strong for my mom and am looking for some positive news amongst all this overwhelming news. She was referred to palliative care as well, so I am confused as I thought palliative care was more for end of life. I am hoping and praying that the mutation the doctor speaks of is good news and will respond well to therapy. 

Re: Stage 4 Adenocarcinoma Lung Cancer

Posted by Brighty on Jul 20, 2020 10:48 pm

User1987‍  I want to welcome you to the site.   So sorry abut the news of your mom.    Pallative  care is more about pain management and making the person comfortable.    I want to introduce  you to WestCoastSailor‍  who had immunotherapy for stage 4 lung cancer and is responding well .    He can tell you more about it .    Do you have anyone to support you or help you with caregiving?   siblings or other family  members,?      There are some discussion  groups  on the forum for caregivers under 'forums 'as well as lung cancer  discussions under  cancer types     .check them out and join if you are comfortable  .    
Help is out there. All you have to do is reach out.

Re: Stage 4 Adenocarcinoma Lung Cancer

Posted by Laika57 on Jul 20, 2020 11:00 pm

Hi, User1987‍ 
I had that same reaction when I read my husbands chemo regime was aimed to be palliative. I've learned there's a difference though, between palliative and hospice care. 

Palliative care is an approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual.

From the WHO website

I'll leave it up to your mothers doctors to say intelligent things about her situation. They know better than me.
They will give you their best advice. What your mother chooses to do with it is up to her.

all you can do right now is be there for her. But also be sure to take care of yourself. Talk this over with a trusted friend or another family member. Make sure you eat and sleep right. Exhaustion leads to saying and doing things you may later regret....
There is hope and there are curve balls. Don't borrow future troubles, cherish the good days instead.

all the best

Karin
Have you hugged your dog today?

Re: Stage 4 Adenocarcinoma Lung Cancer

Posted by User1987 on Jul 20, 2020 11:10 pm

Thank you Laika57‍ for your clarification. When the doctor mentioned palliative, I felt like I couldn’t hear anything else the doctor said. English is my moms second language so I am the one communicating to the doctors regarding her treatments and symptoms. Thank you for your words of hope. 

Thank you Brighty‍ for welcoming me to the site.  I do have a lot of support with caregiving including my dad and 4 other siblings. I am just having a very hard time with the news. Any insight you have on immunotherapy WestCoastSailor‍ would be so much appreciated. 

 

Re: Stage 4 Adenocarcinoma Lung Cancer

Posted by WestCoastSailor on Jul 21, 2020 1:44 am

User1987‍ 

Welcome to the site nobody wants to join. (But is usually grateful for anyway.)

True words spoken by Brighty‍  and Laika57‍ . They asked me to speak to immunotherapy but the truth is that while immunotherapy works well for many people, it didn't work for me. I'm currently on something referred to as targeted therapy which lies between chemo and immunotherapy. It has been 2 years since I was diagnosed and 1 years since I was told it had progressed to Stage 4. I like to say I have a "best before date" now. I think of it as having a chronic disease, something that is going to take me out eventually but until then I have a few things to do.

Congratulations. Every time I ask for a referral to palliative care, my oncologist chuckles and says he doesn't think I need it yet. And given that I'm in the middle of training for a 5K race he might be right about that. If it sounds like I'm bouncing back and forth between dying and living, between encouragement and brutal reality, welcome to the world of a metastatic patient.

Another option that may be discussed is palliative radiation. This uses radiation to kill the tumours in the bone and reduce the pain of bone metastasis. Things will become clearer once she meets with the oncology team to discuss treatment.

In the meantime Canadian Cancer Society produces a wonderful booklet on Lung Cancer that is available here as a pdf and there is another booklet available for patients with advanced cancer.

The lung cancer forum over here also has a few threads on immunotherapy. (https://cancerconnection.ca/discussions/viewcategory/68)

Any particular questions that we can help with let us know.

Angus
My story: http://journey.anguspratt.ca

Re: Stage 4 Adenocarcinoma Lung Cancer

Posted by User1987 on Jul 21, 2020 2:05 pm

Thanks for the information WestCoastSailor‍.  It is so great and amazing to hear you are training for a 5K race. Good luck!

It is hard for me to read any information with the word terminal or anything related to it.  I feel I have not yet learned how to cope with this information.  I read somewhere that a lot of the 5 year statistics are calculated from when before immunotherapy and newer targeted therapies were available so I am trying to cling onto that information and I am trying my best to concentrate on the treatment plan in order to not think about the bad. I called the doctor and found out my mom is ALK negative but she is over 50% positive for PD-L1 expression. I am not sure what this means yet. 

Re: Stage 4 Adenocarcinoma Lung Cancer

Posted by WestCoastSailor on Jul 21, 2020 4:06 pm

User1987‍ 

The ALK mutation is one of several mutations that targeted therapy can be used on. As advocates we are pushing to make sure that the full panel gets checked but often that doesn't happen yet. Differences between standard of care for the different provinces. Maddening but true. My targeted treatment is based on EGFR. There is another common one MET.

The > 50% PDL1 is great news. This means that either pembrolizumab (Keytruda) or durvalumab (Imfinzi) should be offered.  They are the two immunotherapies that are changing the survival stats so dramatically. They are effective at slowing and often reversing tumour growth.

I understand the reluctance to think and talk about terminal. I went through a lot of denial and anger initially. But it helps me be realistic about my future and pushes me to keep my bucket list in view and my accounts short as they say. I'm still kind of in shock that I can trian for 5K but the mental boost that I get from it is incredible. Not too mention that in this first short month of training my blood pressure has dropped by ten points. If you had told me I was going to see that benefit I might have started sooner. Once I got through that initial stage it reordered my priorities, something that many cancer patients and their caregivers report.

Stay in touch and if you have more questions feel free to fire away. I would remind you that we aren't doctors but I have found that understanding what is happening is important to my health. Sometimes as patients though we have insights that they don't have.

Angus
My story: http://journey.anguspratt.ca

Re: Stage 4 Adenocarcinoma Lung Cancer

Posted by Lianne_adminCCS on Jul 21, 2020 5:46 pm

Hello S19‍  and welcome to the community.
I noted you were looking to connect with others dealing with stage 4 adenocarcinoma lung  cancer and wanted to introduce you to this thread and to User1987‍  whose mom was just diagnosed as well.

Hoping this discussion and these members here can help support you . Feel free to ask questions of the group.
We are listening

Lianne

Re: Stage 4 Adenocarcinoma Lung Cancer

Posted by User1987 on Jul 21, 2020 9:45 pm

WestCoastSailor‍ Thank you Angus, for all your help. I agree that I feel that I need to understand what is happening with my mom’s health in order to try to be the best advocate for her. When I called the nurse, she said the results of the EGFR weren’t on my moms chart (we live in Ontario) but there were some results still pending so I’m hoping that once I speak to the oncology team, we will get that information.

I find it so inspiring and hopeful to hear about you training for a 5K.  Amazing that it dropped your blood pressure that much!  My mom was so active and only complained of mild pain just two weeks ago, before her diagnosis, so learning that her cancer has spread so much is still so shocking. She has slowed down a lot these past few days after her radiation treatment and learning about her diagnosis, but I know all of this information has taken an emotional toll on her. 

I visited your website and wanted to say happy early birthday! My mom also turned 62 in March. Your video was also inspiring.  Thanks for answering my questions and hope to stay in touch. 

Re: Stage 4 Adenocarcinoma Lung Cancer

Posted by User1987 on Jul 21, 2020 9:49 pm

Hi S19‍. I am also new to this site after learning my mom was diagnosed with stage 4 adenocarcinoma. I am still learning a lot, but please reach out if you have any questions as I have found this community to be very helpful. 

Re: Stage 4 Adenocarcinoma Lung Cancer

Posted by S19 on Jul 21, 2020 10:22 pm

Thank you for the welcome.
 I have many questions and will reach out very soon. Looking forward to chatting and learning.
 

Re: Stage 4 Adenocarcinoma Lung Cancer

Posted by Cynthia Mac on Jul 24, 2020 9:17 am

Hello, User1987‍ And S19‍ . I was my Dad’s caregiver - he had an aggressive form of lung cancer, and was involved in a clinical study for Keytruda/ pembroluzimab from the time they discovered his cancer had metastasized to his liver until the time he passed away (from a different cause). He was responding very well to treatment and was almost a year into his two-year clinical study. 

User1987, it does take time to adjust to the fact that your parent’s cancer is “terminal.” It can also be hard to accept that their time left is going to involve things like chemo and testing and other things you’d rather not see a loved one experience. But, cancer gives us one gift: the gift of one more opportunity to strengthen our bond, by giving some precious time to say necessary things. 
“When the root is deep, there is no reason to fear the wind.” - Japanese saying