Questions to ask

[Cardinal1111]

Hello

My wife’s into 5th year of stage IV. She has EFGR marker and had used Tarcivo when it stopped working went on Targreso. It appears it has run its course. She recently had fluid build up and had pluerex catheters in left and right lungs. This was successful. Her latest symptoms are horrible cough that is productive and somewhat controlled with mucinex liquid and extreme fatigue.

Her doc is looking into latest trial and possibly chemo pill. He has tried 2 rounds of chemo ( I’ve forgotten name, appears to be common combo) but it was not effective. He indicated she does not have marker for Keytruda.

What questions do we ask and where do we go from here. We have been extremely blessed up to this point and she has done very well except the last few months have been pretty challenging.

Stay safe and sending blessings to all..

[Miranda_GO2 Partner]

Hello Cardinal1111,

Thanks for reaching out on this message board. We have wonderful community of patients/survivors/caregivers here who will likely share their experiences, but I wanted to reach out and let you know that GO2 Foundation for Lung Cancer's Helpline (1-800-298-2436/ [e-mail]) can help you map out questions to ask the doctor and can also refer you to our LungMATCH team to discuss treatment and trial options (which you can then talk to her oncologist about).

How long was your wife on Tagrisso before she had progression? Did the doctor order new biomarker testing when she progressed? From your message, it sounds like the doctor checked for PD-L1 (one of the tests they look at for immunotherapy) and she didn't have any expression, but I am wondering if she had any changes to/ new biomarkers found?

In addition to your support, is your wife receiving any palliative care for her symptoms and side effects? Palliative care can be helpful for this, if not, this could be something to also talk to the doctor about as an additional supportive option. Here is the link to GO2's palliatve care page: go2foundation.org/treatment...

From your message, I can tell you are a wonderful advocate and support to your wife and I look forward to helping any way I can. Feel free to reach out to me at [e-mail] if you want to talk more about the questions I mentioned above.

Sending you and your wife all my best!

[Cardinal1111 in reply to Miranda_GO2]

Hello

Thank you for following up I will ask if there were any additional bio markers. She was on tagrisso for about 2 years. Pasllative care, mussinex for the cough which is worse on some days. Today it’s bad., so 2 shots of musinex she is also taking larazapem for anxiety. She developed a blood clot in right leg so she’s taking shots 1 per day.. not fun and sometimes she won’t let me. She has no symptoms or swelling. This developed while in the hospital for the plurex procedure. She was in the hospital 3 out of 4 weekends. So if that is palliative care then yes she is on it.

She really has been blessed on not had any real symptoms or quality of life issues until January. Since the the fluid which we thought once pluerex procedure was done she would be set. Now PleurX is complete and this horrible cough kicked in and CEA numbers rising . So guidance was to sto because she had to be off for 4 weeks before she can qualify for trial.

So long answer and horrible Thumb typing, but maybe you got a better idea as to what is going on. We are to hear from him this week via video chat. We pray for some good news.

I will follow the rest of the advice above,

Thanks for following up, as you know hearing from people that are listening is such a blessing.

“Peace and Love”... watched a Ringo Starr interview.,,

Bill

[Miranda_GO2 Partner in reply to Cardinal1111]

Thanks for the update, Bill. Where is your wife currently being treated? She may have a palliative care team, but it sounds like it might just be her usual oncology team prescribing her medications to manage symptoms to help with quality of life challenges. Palliative care teams are specialized professionals who focus on addressing quality of life issues (sometimes in the home, office, or hospital-but with Covid-19, this may just be over the phone depending on where you live).

Please do continue to keep us posted about how the video chat with the doctor goes. I will also pray for good news.

[Jenniferroseolson in reply to Miranda_GO2]

Bill, you are doing a great job advocating and caring for her. I want to “second” Miranda’s suggestion about inquiring about an actual palliative care specialist doctor. Your oncologist can focus on treating the cancer and the palliative care doctor can help overlook all of the various side effects and symptoms and medications that are being used to help her be as comfortable as well as possible. I have had a palliative care physician since my first week of diagnosis with stage four lung cancer almost 5 years ago. At that point my healthcare system was a very small department but one of the best in my region and even the country. It has grown tremendously in many of the larger cancer care institutions, so hopefully you can access someone at yours. Best wishes and prayers

[Denzie Moderator Volunteer]

Sorry I didn’t see this sooner. It sounds like she has a doctor who wants to keep her in the fight. I hope they find a trial for her. How did the video chat go?

[Cardinal1111 in reply to Denzie]

Hello

I hadn’t known exactly what Pallative Care was until now. I thought it was hospice and we are not needing that. The video call ended with her getting antibiotics for possible pneumonia which he didn’t think was causing the cough but wants to rule it out. The confusing part when I went to pick it up there was actually 2? Anyone ever been prescribed 2 antibiotics? We are concerned with that, because she gets extremely sick on antibiotics. She is taking one right now and we plan on calling to ask about the second one.

I will have to discuss the issue of Pallative care with her. I know she will originally process it as hospice, but I will try and help her understand what it is.

I searched Sammons webpage and noticed they have the service. I assume the Doc never brought it up because for the last 4 yrs she has been doing great.

Thanks everyone for responding.

Peace and Love to all

[Miranda_GO2 Partner in reply to Cardinal1111]

Yes, palliative care is often misunderstood as hospice, but it is different. This website is a good resource for learning about palliative care and you can even search for a palliative care team using the directory/ zip code search. getpalliativecare.org/

I'm sorry to hear your wife has been getting sick on antibiotics, have you checked with the pharmacist to see if they should be taken with or without food?

[Denzie Moderator Volunteer in reply to Cardinal1111]

A shareable experience: a person in my support group had many issues, cancer and heart disease being the two biggest but she has five or six specialists. She got frustrated because her doctors did not communicate which caused some treatment errors. I suggested she look into getting a palliative care doctor.

Later she came back and said it was the best experience she had because he looked at records from all doctors and made some suggested corrections. They improved her quality of life.