stage 4 mutations question

[christine6]

Hello. My grandmother (88) was diagnosed with stage 4 lung cancer 10 days ago. I am trying to help her and my parents make decisions. She has a tumor in her right lung and the doctor says that cancer cells are present in the fluid in her lung (which makes the stage 4). No other cancer is present in her body. I have a question about molecular testing. Her results came back negative for mutations. But, she did not have a biopsy of a solid tumor. The "fluid" was used to run the test. And, the test results came back in 1 week. Should I be concerned this was not run properly?

[Denzie Moderator Volunteer]

No reason to think anything is amiss at all, especially since they did get enough cells through the pleurodesis to test for useable mutations.

A fine needle niosy comes with a risk of a collapsed lung. An endobronchial ultrasound (EBUS) might damage her vocal cords. Because of her age the risks these procedures present are even greater.

Her surgeon chose the least invasive method that posed the fewest risks to her overall health. This would boost my confidence level in my doctor.

Please note that liquid biopsies (blood or urine) are rapidly becoming accepted as a way to evaluate circulating tumor cells or their RNA to monitor changes in a cancer to determine when it has developed resistance to a treatment. They can also signal progression long before it is significant enough to register on a CT.

I hope this helps.

[christine6 in reply to Denzie]

Thank you. This is very helpful. One more question. Is immunotherapy an option? She/her doctor have ruled out chemo, surgery, and radiation.

[Denzie Moderator Volunteer in reply to christine6]

Lisa (purpleplace) has given you a great answer. The only thing I need to add is that if she is denied both Keytruda and opdivo apply for expanded use (formerly known as compassionate use). I would choose Keytruda first because it has been approved as a first line and Jimmy Carter was in his late 80s when given it.

[christine6 in reply to Denzie]

thank you

[Faith17]

Christine6 why did the pulmonologist didn't opt to have a PET scan done? A PS would detect tge presence of a cancerous tumor and allow the surgeon which option to take. Sending my best wishes and Gods guidance for all

[christine6 in reply to Faith17]

Thanks for your reply. She did have a full PET scan and a second CT of her brain to see if any cancer is present in other areas of the body. Right now, localized to right lung and nodules in same lung. Thank you for your kind words.

[ThePurplePlace]

Only one of the Immunotherapy meds (Keytruda) is FDA approved as a first line Treatment for NSCLC, and you need to be tested for a PDL1 biomarker, to use Keytruda.

Why have they ruled out chemo and radiation?

The other two Immunotherapy meds (Opdivo and Tecentriq) are currently only approved as a second line Treatment. These are often used after a patient has first tried s Platinum based chemo. The are not currently approved for first line.

The other option may be a clinical trial.

Wishing her the very best.

~ Lisa

[christine6 in reply to ThePurplePlace]

Thank you. This is so helpful. Is a biopsy need to test for a PDL1 biomarker or is there another test (i.e., from the malignant fluid)? She was offered and declined interest in chemo. She has significant comorbidities (high blood pressure, some vision loss, limited walking) and wants to balance quality of life with treatment. Radiation was not offered. Not sure why.

[ThePurplePlace]

Good question, I believe they need to biopsy the tumor, but your Oncologist will know.

Good Luck.

[ThePurplePlace]

I am very sorry that your Grandmother has such a tough challenge and I don't know if she'll be any happier trying Immunotherpay (if she does has the PDL1 Expression) that is required for Keytruda. It's in many ways have Immunotherpay is similar is to having Chemo, it's given by infusion every two weeks and it has it's own potential side effects. If she has already refused Chemo and Surgical options, I am not sure this would be something she would want to do? I have to admit that if I were 88 years old and already had some other health challenges, I think it would be very tough to decide to try Immunotherpay.

I was 56 when I was diagnosed and also had a brain tumor and pulmonary embolism. The treatments were not easy and there were days when I was totally exhausted and spend much of my time sleeping. Thankfully, once I did move on to Immunotherpay, I did have a good response, despite the side effects. I am so very thankful to now be stable and "Off Treatment". But, I was on non-stop treaments for 18 months and it really did have it's challenges. I also was very determined to fight hard and was pretty healthly when this all started (March 2015). The diagnosis was a total shock -- But I am still no where near ready to leave my children and the sweet little grand-daughter that has now come into my life. I am so very thankful that I had good results, but I know that I am also fortunate and not everything has the same response that I did.

Quality of Life is also very important to me and if and when the time comes that the treatments are taking away my quality of life, I have already told my husband and children, that I will not go further. It's a hard a battle and is quite fatiguing, at the very least.

My heart goes out to you all -- Cancer is such a devastating illness -- it's very hard to know what to try and what results she will have. I do HOPE if she does chose to try Immunotherapy that she would have the PLD1 marker and go through treaments without many side effects.

Please take care -- I am so sorry that you are all facing this....

~ Lisa