Supporting My Mom

[Sunny552]

Hi Everyone,

I am new to this site.  My mom was diagnosed with squamous nsclc in December 2017.  She has a 4 cm by 6 cm mass in her lower right lobe.  There have been a few issues with staging and the oncologist is considering it stage 3B, although the EBUS came back negative on the lymph nodes (so could be 2B).  Mom also has severe COPD and is not a candidate for surgery.  Mom started with radiation in conjunction with chemotherapy in January and recently completed the 30 rounds of radiation and the 6 rounds of chemo to support the radiation.  During this process, mom got esophagitis and required a feeding tube.  At the time the feeding tube was being put in by interventional radiation, her colon was perforated.  This resulted in emergency surgery and 2 full weeks in the hospital.  Mom is now at home and still pretty weak.  We went back to the oncologist today and were assuming she would still be taking her two larger rounds of chemo to finish this process.  The oncologist doesn't think that is a good idea and gave mom 3 options:

1.)  No further treatment.  Take a wait and see approach.

2.) Reduced chemo.  He said what was scheduled was 3x more potent than she took originally to support the radiation.  He does not think she would tolerate this well and would only consider more chemo if the amount was reduced.  He thinks she is too frail for this option to be beneficial.

3.) Start immunotherapy (Durvalumab) in about 6 weeks (after another pet scan).  

My mom is leaning towards starting immunotherapy.  Here is my concern.  I was under the impression that testing needed to be performed on the biopsy sample to ensure she would benefit from immunotherapy.  According to the oncologist, this is only done if the patient is confirmed stage 3 or stage 4.  Because mom's diagnosis is not completely staged (2B or 3B) this is not necessary and they will treat it as 3B and proceed with immunotherapy.  While I am glad there are other options for treatment, I just want to ensure she fully understands what the options are and what might be best.

I would appreciate any thoughts you guys had on this.

Thanks,

Sunny

 

[BridgetO]

Hi Sunny and welcome here.

Your mom has really been through a lot!  I don't know a lot about immunotherapy, but I also thought that testing needed to be done on the biopsy sample. I looked Durvalumab up on line and learned that it targets  the protein PD-L1. So it seems like  a test for PD-L1 would be needed. But maybe not Have you looked at immunotherapy on the main Lungevity site? Here's the link:  https://lungevity.org/for-patients-caregivers/lung-cancer-101/treatment-options/immunotherapy. There, it looks like durvalumab is used differently than other immune checkpointT inhibitors

There are folks on these forums who've had immunothera[y. I hope they'll share  information and experience with  you.

Best wishes to you and your mom. Hang in there, both of you.

Bridget O

[JoshK]

I'm so sorry for your Mom's situation. I'm going through the same thing with mine. Just remember however hard it gets, you're not alone.

I'm not an expert on this either, but I would think there are a number of targeted and immunotherapies that could be used depending on the specific molecular and genetic makeup of your Mom's cancer, and that would require  further testing. I think in addition that there are options at any stage of cancer.

[Tom Galli]

Sunny,

Well here is some good news about Durvalumab.  It has been FDA approved to prevent progression after successful chemoradiation treatment.  The drug works regardless of PD-L1 expression so if I'm reading the article right, a biopsy to identify PD-L1 is not needed.

Given her complications, Durvalumab may indeed be a good choice.

Stay the course.

Tom

[Sunny552]

Thank you Bridget and Tom for your responses and links.  Very helpful and I feel better already.  

You are so right Josh!  It is nice to know I am not alone and as caregivers we need to understand what the options are.  My goal is to be as educated as possible about this crappy disease and do whatever I can to advocate for my mom.  She is an amazing woman and deserves the best treatment possible so I want to ensure she fully understands her options.  

Sounds like Durvalumab might be the best option at this time.  

Sunny

 

 

[Steff]

Sunny,

Welcome here, glad you found us. I too am a caregiver for my mom. She began with Stage 3A NSCLC adenocarcinoma, had a lobectomy and follow up chemo/radiation afterward, this was in 2016. Everything was relatively easy for that go around.

Fast forward to June 2017. My mom was diagnosed with a mass on her trachea and cutting off her airway. No option for surgery and radiation was not suggested as first line treatment. She was put on Keytruda (immunotherapy) and alimta/carbo for 6 sessions. Then went to just Keytruda. You can see my monthly updates and my mom's full story here 

 

I came to this group heartbroken and lost. The folks here helped me through my darkest time where I cried non-stop for weeks. My mom had a really tough go, like your mom has. My mom was in the hospital for 2 weeks with multiple issues and didn't deal with the rounds of chemo very well. A few people that saw her between August and October were afraid she wasn't going to pull thru. It all seemed so hopeless. But she did pull thru and the immunotherapy is doing it's job. Side effects are mild but the fight still comes with some set backs. But those set backs are much less traumatic than before.

You are smart to reach out and gather as much info as possible. And this is a really good place to do both of those. We will support you thru this. We will provide you with as much info as we can. And you will get thru this. Some really helpful posts for me is those that Lauren posts called Weekly Clip Report under the Lung Cancer in the News forum. I have learned a lot from the stories listed. 

Finally, the immunotherapy option is a positive one. I wasn't sold on the idea when it was first recommended to my mom. But now I am so happy it is an option for her.

Take care,

Steff

[Sunny552]

Steff,

After reading your mom's story and your monthly updates I feel very hopeful.  I was planning on retiring in a few years but we lost my dad about 10 years ago and my mom moved out to live with my family.  I went ahead and took an early retirement in March so I can take care of mom, getting her to appointments and dealing with all the things that need to be done on her behalf.  She is 77 and was already not doing great due to the COPD before the cancer diagnosis so this has been a real setback.  Palliative care is now providing home care so that has been helpful.  

I am so hopeful that immunotherapy is going to be the answer for her.  I appreciate the support and I will look a the weekly clip report next.  Just knowing so many others have walked this path already and are doing well is encouraging.

Thanks everyone.

Sunny