Judy M2

The National Cancer Institute has given the University of Pennsylvania a $9 million grant to research a new imaging technology and even microchips to aid in diagnosis and surgical removal of tumors. https://lcfamerica.org/research-grants/latest/research/technology-lights-up-lung-cancer-tumors/

Michelle, I didn't know about the recommended 25 lbs. of extra weight, but after losing 20 lbs. after radiation, I regained it and intend to keep the extra padding. Kamoto, I know that people lose weight on Tag because of loss of appetite or change in taste. THC does help with appetite. Your doctor may also have some recommendations for gaining weight.

Hi Debbie, everyone has already given you great advice, so I'll just say welcome and try to breathe. A lung cancer diagnosis is usually a shock to everyone, we've all experienced that. But there are so many treatment options today that weren't available 10 years ago. I'm from Rockland County, NY and now live in San Diego, CA. I'm a member of the 9/11 survivor community, having worked for years in Lower Manhattan before and after the event. I was diagnosed at Stage IIIB in October 2019, had chemo and radiation first, then started a targeted therapy in March 2020. Today I have No Evidence of Disease and am healthy again, if you can believe it. Try not to worry about the radiation from scans, the scans are essential for both diagnosis and management of this disease. Between 30 radiation treatments to regular 3-month PET/CT scans, I should be glowing, lol. Please let us know what your next steps will be and try to stay away from Dr. Google!

Hi Mary Kate and welcome. I'm a Stage IIIB survivor, diagnosed in October 2019. I had chemo and radiation first, then started Tagrisso in March 2020. I currently have No Evidence of Disease (NED) and, as my oncologist proclaimed last week, I've "kicked cancer's a**". In addition to this forum, there are a few private Facebook groups for EGFR folks that you might want to check out: https://www.facebook.com/groups/2098822473719352/?ref=share https://www.facebook.com/groups/EGFRlung/?ref=share https://www.facebook.com/groups/targetedtherapylung/?ref=share https://www.facebook.com/groups/EGFRResisters/?ref=share Like you, I have very few side effects from Tagrisso, and I hope to stay on it for a long time.

@Tom Galli has had 5 recurrences and has written extensively about his experiences. Check out his profile.

I don't have this side effect, but your doctor can give you prescription lomotil. Also, some people take a lot of imodium every day, I think I've read up to 8 pills a day. Also try to see if you've become lactose intolerant. If dairy is a contributing factor, OTC lactase pills can help a great deal. Be sure to drink plenty of fluids so you don't get dehydrated. Ugh, Tagrisso nails are the WORST. Mine are a mess, and no nail strengtheners have done anything. Right now I'm experimenting with Nail-Aid Keratin 3-Day Growth. For $3 and change I figure it's worth a try.

I watch as many online presentations as I can and have learned a lot over these last couple of years.

I've had a 5 mm nodule for a couple of years now. It's too small to be characterized on a PET scan. My oncologist just monitors it with regular 3-month scans. I'm also on Tagrisso for 30 months now (after chemo and radiation).

Cure Today's Educated Patient Lung Cancer Summit will be on October 1, 2022 at 11 a.m. Eastern/8 a.m. Pacific. Free registration and agenda are at the link. https://event.curetoday.com/event/95a30b08-808f-4741-a834-534c8aa1c73d/summary

I also had a rigid bronchoscopy to get a tissue sample of the tumor in my lower left lung for biopsy and biomarker testing in the very beginning. It was an easy procedure for me, and I only had a minor sore throat for a couple of days. Hope your meeting with the surgeon goes well, Lori.

The FDA has just granted approval for the new targeted therapy Enhertu: https://www.targetedonc.com/view/fda-grants-accelerated-approval-to-trastuzumab-deruxtecan-for-her2-metastatic-nsclc

I'm so sorry, Sajid. My condolences to you.

Hi LoriAnna, glad you found us. Liquid biopsies are gaining a lot in popularity because they are not invasive and can be processed quickly. They are usually used for biomarker testing, and I hope you'll also be getting results from that. My Stage 3 adenocarcinoma was diagnosed in October 2019 by a PET/CT scan and tissue biopsy that was done by a bronchoscopy, which is the traditional mode of diagnosis. If you only have the one cancerous nodule, I'd think it could be removed by surgery. It sounds to me like you should be consulting with a pulmonologist and a thoracic surgeon once you get your liquid biopsy results. I know this is a worrisome time but try to stay positive like Justin suggests.

Wow, Mike, what a terrible experience, and I can relate. I echo everything that the others have said. I'm a member of the 9/11 survivor community, having been an office worker downtown for many years. I've gotten qualified into the World Trade Center Health Program and have made my way through the requirements of the 9/11 Victim Compensation Fund. I don't know if you have a similar situation, but I can tell you everything you'd need to know. I was diagnosed with Stage IIIB non-small cell adenocarcinoma in October 2019. I had 6x chemo (carboplatin and taxol) and 30x radiation first. Biomarker testing showed I had an EGFR mutation (like Kamoto), and I started on the targeted therapy Tagrisso in March 2020. I've had No Evidence of Disease (NED) since April 2021. I tell you all this to stress how important biomarker testing is, so I hope you'll ask your oncologist if you have a gene mutation that is targetable by a pill. I never had steroid crash, but steroids did give me other side effects and now I have to be careful about oral steroids in the future. Did you get Benadryl in your infusion? That generally helps prevent a reaction to the chemo drugs. I hope you'll consider getting a second opinion. MSK in the city has a good thoracic oncology department. As for prognosis, my oncologist has never told me how long I have to live. I've been through some really rough times with my treatments (particularly radiation), and I'm just happy to be healthy again. Living one day at a time with gratitude. This group will certainly understand your concerns, and LUNGevity is a great resource for information. Stick with us.

Hi, Mike and welcome from a former New Yorker (Rockland County). Sorry you have to be with us. I've had chemo and radiation before starting on a targeted therapy for my particular gene mutation. I'll look for your question under Chemotherapy.

Great point. I also recommend palliative care before starting treatments. They are more than pain management. There is good information on palliative care under "Supportive Care".

Your story is a little like mine. I was misdiagnosed with allergies and acid reflux for several months after I had lost my voice. My PCP finally sent me for a chest Xray, and based on that, I was diagnosed in October 2019. My Stage was IIIB, and biomarker testing revealed an EGFR mutation. I had chemo and radiation first, then started targeted therapy in March 2020. I've been NED since April 2021. My next PET scan is in a couple of weeks. Good luck to you and hope your scan continues to show NED!

Thanks, Lou. I cannot recommend palliative care enough!

Hi Samantha, glad you joined. I know what you mean when you say you feel alone. I did too when I was undergoing treatment (chemo and radiation). I didn't know about LUNGevity then, and I didn't know anyone with lung cancer. I was diagnosed at Stage IIIB in October 2019 and did not think I'd last through 2020. Believe me, that was a rough year. Well, I made it through and I'm still here and healthy. This community and LUNGevity's many resources have helped me understand this disease and my particular driver mutation (EGFR Exon 19 deletion). We may not have all the answers, but chances are someone here has similar experiences. Don't hesitate to ask, and venting is acceptable!

I'm sorry I missed this. Research is developing a 4th generation EGFR targeted therapy, and they are also looking at combination therapies. Plus, at the time of progression, the mutation can change. Try to take one day at a time and don't look at statistics. Many people are getting quality years on targeted therapy.

Chemo today is not like it was in the past. I had chemo and radiation before starting Tag. For me, radiation was hardest because it treated lymph nodes near my esophagus and caused esophagitis. If you do elect for chemo, get a palliative care specialist on your team beforehand. I'm sure Mayo has that resource.

If you register here, the recordings will be available for a while: https://www.lungevity.org/blogs/ILCSC2022

No, I've never even heard of Signatera.

I think there may be a recording available in a few days, so keep checking the home page.

Testing for a mutation is the right move. From my very limited understanding of MRD, a targetable mutation is what would be treated.