Judy M2

In my case, I've had so much radiation I don't worry about it.  I had 30x radiation treatments and have had PET/CT scans at least every 3 months since October 2019. I've just graduated to PET/CT scans every 4 months. 

Hi Kristin, it is best to stay away from Dr. Google, and pay no attention to statistics. 
It's vital that the biopsied tissue is sent for biomarker testing, as Karen suggests. 
I'm a 3-year survivor (so far) of Stage IIIB EGFR+ NSCLC. I just want you to know that it is possible to live well with our disease, even at Stage IV. 

A prescription for lorazepam was part of my chemo comfort medications, and it really helped me sleep when I was undergoing treatments (carbo/taxol and radiation). I also take it on the rare occasions when I have shortness of breath. 
A palliative care specialist might be a good addition to your husband's care team. Mine was invaluable. 
My personal experience is that things get worse before they get better. 2020 was an awful year for me. But here I am 3 years later, NED and healthy. My husband was a wonderful caregiver but the stress and worry took a toll on his mental health and he needed an anti-depressant and talk therapy to recover. Don't be afraid or ashamed to reach out to your primary doctor if you find yourself struggling. 

Good questions, Kamoto.
When taking Tagrisso, stay away from grapefruit and grapefruit juice. I've also heard that pomegranate juice should be avoided. 
I've been taking Tagrisso 80 mg since March 2020. My side effects are: dry skin and eyes, itchy rash/eczema, nasal allergies and very sad-looking splitting nails. All manageable. Your wife may or may not get side effects, but regardless I recommend moisturizing well and using products for sensitive skin. 
Best of luck to your wife. 

When I first started Tagrisso in March 2020, I was recovering from sepsis and life-saving abdominal surgery due to aftereffects of chemo and radiation. I remember not being able to tolerate certain odors, and in fact I still cannot stand the smell of bacon cooking. But I don't think I've had taste changes. 
I agree with Bridget that an oncology dietician would be a good idea. 

See an opthamologist to determine what's going on with your eyes. My targeted therapy (Tagrisso) can cause vision issues, so a few months after starting it I went to an ophthalmologist for a baseline exam. All was normal, even though I have occasional blurry vision due to Tagrisso. 

Definitely get a palliative care specialist on the team. That's the first thing I'd do if I needed radiation again. 
When I had severe esophagitis from chest radiation, a feeding tube was suggested by my medical oncologist's NP. But my radiation oncologist's team warned me against it, and I'm sorry I listened to them because not being able to eat or drink caused some really serious complications. 
Be cautious about Tylenol, excessive dosages can cause liver damage. A palliative care doctor can prescribe a more effective pain medication. Mine prescribed methadone for my severe pain, and when I started targeted therapy, she switched me to a Fentanyl patch. Both worked well. Heavy-duty pain needs heavy-duty medication. 

In my case, I've had so much radiation I don't worry about it.  I had 30x radiation treatments and have had PET/CT scans at least every 3 months since October 2019. I've just graduated to PET/CT scans every 4 months. 

Esophagus tumor is resolved.   Lung tumor is 1.7 x 1.4 which seems to indicate the lung mass is being controlled by Tagrisso but it looks like tumor reduction is slowing.  Will see what oncologist says

Thought I'd give an update... so, my brother improved enough that the docs felt comfortable sending him home on the 21st so that he could be home for the holidays and beat the big storm that was heading into our area.  Well, that was a bad decision.  A couple days later (X-mas Eve morning), another extreme breathing difficulty episode.  This time O2 levels dropped to 70.  He is still at UofM hospital now and not doing too well.  They have treated him for pneumonia, other infections, and inflammation.  Haven't seen much improvement.  He is on the bi-pap 24/7 with settings now as high as they go.  Lung docs feel that it is either the cancer or scar tissue in his lungs causing this and gave him days to live.  I requested they contact his oncologist and when he came up, he suggested an infusion of Infliximab.  It is typically for Chron's disease but he has seen it reduce lung inflammation in patients when the high-dose steroids didn't work.  Still waiting to see if that helps at all.  However, yesterday morning, he had a scary episode of extremely high resting heart rate.  Values over 200bpm.  Docs finally got his numbers back to normal (his normal).  He has been sleeping ever since and ate nothing yesterday.  This is so heartbreaking.  

It's checkup time again. I had my brain MRI a couple of days ago and saw the oncology radiologist yesterday. Things are stable. 
I'm having some emotional whiplash, though. No scanxiety beforehand this time (thank goodness) but with each test, I'm reminded of the realities of lung cancer and I just...grieve. 
The good news: the next scan is in three months, not two!
One foot in front of the other, I'll shift my focus to the sweet life I am lucky to have.  It's so much easier said than done, eh? Onward!

dad just got a ct scan which shows worsening tumor progression  keytruda monotherapy seems like it is not working. It makes sense since his Pdl-1 is negative and have a low TMB. I’m dreading the next steps. We have an appointment with the oncologist next week. There seems like there is no clinical trails for his mutation (tp53). Man this hurts

I do know of people who take turkey tail supplements and haven't heard anything negative. Not sure about reishi. As an EGFR patient, I know to avoid antioxidants. They can also encourage cancer cell growth. 

I know that people do use FenBen but others are adamantly opposed.
Regarding keto diets, I was on one for most of 2019. Then I was diagnosed with Stage IIIB EGFR+ NSCLC in October of that year. That diet did nothing but mask the real cause of my weight loss. After undergoing radiation and chemo and now targeted therapy (for almost 3 years), I am NED and back to good health. The only supplements I take are what my primary doctor recommends for other conditions (like osteopenia). I'm skeptical of claims about both sugar and supplements, and in fact some supplements can interact with targeted therapy drugs. 

I had 30 chest radiation treatments with the Varian TruBeam, along with chemo. My treatments were in a community setting, not an NCI. 
I don't recall whether your dad has had biomarker testing done. That would be an important piece of the diagnostic process.

This is a rough journey for anyone who travels it, that is for sure, and I'm sorry you and your family are going through this difficult time. My lung cancer isn't curable either, and I have no idea how long I'll survive it. But the reality is that tomorrow isn't promised to anyone. I've learned to live one day at a time. 
I don't remember if you've looked into a palliative care specialist who can help manage your dad's pain and quality of life. I couldn't tolerate the usual opioid painkillers like oxycodone and morphine, so my palliative care doctor prescribed methadone, which worked very well when I had a severe case of esophagitis from radiation. A sleep aid and anti-anxiety medication can also be prescribed (both are standard chemo comfort drugs). Palliative care is a great resource and I can't recommend it enough.
I hope your dad's radiation treatments start soon. Waiting is so awful. 

So sorry to hear this. I hope your brother improves quickly. 

So sorry to hear this. I hope your brother improves quickly. 

This is not the same thing, but I watched my 99 year old father decline for the last 5 months of his nearly 2 years under hospice care. It is hospice's job to make your dad comfortable. Morphine is the standard comfort drug, but there are other options.
Toward the end, my father was unable to swallow, and in his final days a decision was made among the care home administrator, hospice nurse and social worker and me to heavily sedate him and withhold all food and water. This was a merciful way to let him go. 
This is a really difficult time, but I hope you can share some precious moments with your dad. 

Sally, I had acid reflux from radiation, not chemo. It was heart attack-level pain. I was prescribed pantoprozole (Protonix). I also avoided dairy during that time and, of course, acidic foods because I also had esophagitis from the radiation. 
Acid reflux can also cause nausea, so take those anti-nausea meds (and remember to be proactive about constipation). Dramamine makes an OTC ginger chew for nausea, and ginger tea may also help.

So happy for you. Congratulations and Happy New, Year! 

Sally, I had acid reflux from radiation, not chemo. It was heart attack-level pain. I was prescribed pantoprozole (Protonix). I also avoided dairy during that time and, of course, acidic foods because I also had esophagitis from the radiation. 
Acid reflux can also cause nausea, so take those anti-nausea meds (and remember to be proactive about constipation). Dramamine makes an OTC ginger chew for nausea, and ginger tea may also help.

So happy for you. Congratulations and Happy New, Year! 

So happy for you. Congratulations and Happy New, Year! 

Sara,
Welcome and Happy New Year; I wish we didn't need to share good cheer and discuss lung cancer concurrently. Perhaps someday we won't.
So a couple of things come to mind. First, has your Mom consulted with a medical oncologist? Thoracic surgeons are an important part of the lung cancer treatment team but the surgeon's work is done. You Mom will need an oncology (medical and perhaps radiation) and perhaps a pulmonology consultation. Certainly she have a sleep study or perhaps the hospital apnea record is enough to go straight to prescribing a CPAP machine. I've been using mine successfully since 1990.
The first thing your Mom should discuss when seeing the surgeon AND  medical oncologist is follow up chemotherapy. I'd rely more on the medical oncologist view of follow-on chemo than the surgeon's view. For some diagnosed at Stage 1 or perhaps 2A, post surgical chemotherapy can be waved off but most of us should really have it. I had presurgical chemo radiation after diagnosis, then surgery and a years worth of surgical complication. I was supposed to have post surgical chemo but the corrective surgery got in the way and cancer metastasized to my left and now only lung. This blog links a study that speaks to the dangerous nature of lung cancer: its frequency of recurrence after supposedly curative treatment. Post surgical chemo adds a margin of safety for recurrence.
I think it is pretty common that biopsy tissue be sent to a laboratory after a Pathologist's histology examination. This second biopsy is to screen for suitability for treatment by Targeted Therapy and Immunotherapy. These therapies are game changers in survival and so press hard for the laboratory analysis. Yes it is common to add targeted therapy and immunotherapy as treatments alone or in combination with conventional chemotherapy. Blood test tumor markers for lung cancer are not commonly used. The scientific community is working on a diagnostic grade blood test biopsy but it is not yet a standard of care. So only tissue biopsies are used with our disease.
Standard of care for lung cancer gets complicated. It is dependent on Stage and Type. I assume your mom is Stage 2A or 2B. Once these 2 conditions are known, a medical oncologist will walk you through the National Standard of Care the stage and type of lung cancer that your Mom has.
Stay the course.
Tom