Judy M2

First, I recommend joining the Tagrisso (osimertinib) Patients & Caregivers Group on Facebook: https://www.facebook.com/groups/2098822473719352/?ref=share The members have discussed all of the Tagrisso side effects, including GI. Some people find that dairy gives them problems. I have Tagrisso side effects other than GI: splitting nails, nasal allergies and itchy rash that comes and goes. All are manageable. You'll also find lots of folks who are Stage IV and living life. I'm Stage IIIB, diagnosed in October 2019. Had chemo and radiation first before starting Tag in March 2020. I've had No Evidence of Disease since April 2021. I had those dire thoughts when I was first diagnosed too. I've learned to live one day at a time, especially since no one can ever know how long their life will be. I'm grateful for every day.

You'll need biomarker testing to confirm if you have an actionable mutation like EGFR. I've had chemo and radiation before going on the targeted therapy drug Tagrisso for my Stage IIIB EGFR+ NSCLC. Tagrisso is much easier. I've been on Tag for 26 months and have been NED since April 2021. My side effects are manageable: splitting nails, nasal allergies and itchy rash that comes and goes. There are many people living for years on Tagrisso. Your doctor seems to be giving you worst-case information. Although it's true that the cancer cells can eventually figure a way to progress, everyone is different and you don't know the results you'll get unless you try. This private Facebook group, Tagrisso (osimertinib) Patients & Caregivers Group, is a great source of information and advice about Tagrisso: https://www.facebook.com/groups/2098822473719352/?ref=share I don't have experience with immunotherapy, so I can't speak to that.

Kamoto, glad your biopsy was uneventful. My suggestion for your shortness of breath is to ask your pulmonologist for an inhaler. It really helped me when I had SoB. These days, on a targeted therapy, my SoB is rare.

Before giving up, I would get a second--and third if necessary--opinion from a thoracic oncologist. I'm Stage IIIB, diagnosed at age 66 in October 2019. I've had chemo, radiation and am on a targeted therapy drug for my EGFR mutation. Chemo isn't as terrible as you might think. For me, radiation side effects were rough because the lymph nodes being treated were right on top of my esophagus. But those side effects were temporary and the treatments were highly effective on their own. Side effects can be managed by a variety of means, including palliative care. Ultimately the choice is your mother's, but it's vital to get all the information possible before making a decision to give up. Learn as much as you can from this site and the professionals.

I also did acupuncture for radiation side effects. It was very relaxing.

Kelvin, targeted therapy such as Tagrisso is given for as long as it works. (I'm on it for 26 months now.) However, I understand that as adjuvant therapy after surgery for early stages, it is given for 3 years. However, they may change the guidance in coming years. Tagrisso has only recently been approved as early stage adjuvant therapy, and there isn't much experience yet in that patient population.

Kelvin, my oncologist threw the book at my cancer, just like@hillham's did, even though I was 66 at the time. 60's is not as old as you think, lol. My father lived to be 99--that is old!

Hi Phil, I was diagnosed at Stage IIIB adenocarcinoma in October 2019. My tumor was also in my lower left lung with a few lymph nodes affected. I had 6x chemo (carboplatin and taxol) and 30x radiation before starting a targeted therapy. For me, radiation was harder than chemo. My oncologist insisted on a port, so I had that procedure before starting chemo. I still have it today and go for regular port flushes. Chemo infusions are boring. Bring a blanket, reading material, ear buds, a beverage/water and snacks. I did a lot of e-book reading and napping during my infusions. Like Tom says, fill all your chemo prescriptions before starting, you never know if or when you'll need them. Also get some Miralax in case you experience constipation, which is very common. Although I was told I wouldn't lose my hair, I did and it took about a year for it to grow back. I also lost my eyelashes, and today they're still fragile. All my treatments have been successful, and I've had No Evidence of Disease since April 2021. I hope you get good results from your treatment.

Great blog, Lily!

Lily is right, "cure" is not generally a term used in connection with Stages 3 and 4. Management of a chronic disease (like diabetes) is more the goal, and many people can do well for years these days. I'm 68 and Stage IIIB, had chemo and radiation first before starting a targeted therapy in March 2020. I've been NED for a year now but I don't consider myself cured. I can't stress enough that statistics should be disregarded. I personally pay no attention to them. As my oncologist says, I'm an individual and not a number.

Great to hear that gefitinib is doing its job. Hope your wife gets great results from it for a long time. It's hard to answer how long gefinitib will work or what comes after it. I don't know how long osimertinib will work for me, none of us know. Tom is right, live one day at a time. It's really all anyone can do. It takes time to adjust to a targeted therapy, and your wife is expending lots of energy to overcome her cancer. Three weeks is very short. From my own experience, my primary care doctor had to give me a B12 shot after a year on targeted therapy, and I also had low sodium to correct. Both of those can contribute to lack of energy, so your wife might want to see her primary doctor. The morning cough could be allergies (which I have) or acid reflux. An ear, nose and throat doctor can determine if your wife has either.

Kelvin, many oncologists prefer to use targeted therapy as the first-line treatment if an actionable biomarker is found and if surgery isn't an option. My oncologist wanted to treat me aggressively, and boy it certainly was. To me, targeted therapy is much easier to tolerate than chemoradiation. I think it depends on symptom burden. For example, if someone is having difficulty breathing, they would want to start treatment immediately rather than wait for biomarker results.

I had 6x carboplatin/taxol and 30x radiation before starting targeted therapy in March 2020. My hair also started to fall out so I had my husband shave my head. I bought cute headcovers and also got a sleeping cap that was donated to my infusion center along with other supplies by a local church. It took a good year before I needed to get my hair cut again. My targeted therapy has made my hair coarse and curly, which is odd because some people complain that they lose hair on it. In addition to hair, I lost my eyelashes several times, too many to count. That continues to this day. To me, this was more upsetting than losing my hair. There is a cold cap treatment that can prevent hair loss. Your mom might want to ask her oncologist about that. Best of luck to your mom.

I just saw this local news item about a portable cold cap that chemo patients can rent and take home. Although it's less expensive than existing cold caps, it's still pricey but Medicare may cover the cost. Looks interesting. New cold cap can save chemotherapy patients' hair - https://www.10news.com/news/in-depth/san-diego-startup-creates-first-portable-cold-cap-to-save-chemotherapy-patients-hair

GO2 Foundation is interested in why this is happening to young people and has an open study if you're inclined to participate: https://go2foundation.org/blog/young-people-get-lung-cancer-too-we-need-to-know-why/

This hour-long presentation by the U. S. Department of Veterans Affairs contains lots of information about lung cancer screening and care and where the VA is striving to go in the future. The co-founder and CEO of GO2 Foundation was one of the speakers.

Wishing him success! Man with one lung attempting to complete 50th marathon - https://www.10news.com/news/national/man-with-one-lung-attempting-to-complete-50th-marathon

Gefitinib (Iressa) is a first-generation tyrosine kinase inhibitor (TKI) that is used to treat EGFR-mutated lung cancer. I happen to take osimertinib (Tagrisso), which is a 3rd generation drug. https://pubchem.ncbi.nlm.nih.gov/compound/Gefitinib Lots of people take Iressa. I can't speak to side effects, but you may want to join these private Facebook groups, where there is loads of information: https://www.facebook.com/groups/targetedtherapylung/?ref=share https://www.facebook.com/groups/EGFRlung/?ref=share The good news is that your wife will be taking a targeted therapy. Hope she gets great results.

Just be sure to select the name that comes up automatically when you start typing it. There can be several choices to select from. It should appear in blue on your screen: @Judy M2

@dman415, if you enter the "@" sign along with someone's screen name, you will be able to tag that person in your post (like I just did with yours). Even though everyone here may have different experiences and treatments, we certainly do understand, as you can see from the comments.

Mike, what a great post. I'm glad you've had such a positive surgical experience. Not everyone does. My oncologist is a firm believer in the mind-body connection, and in fact both he and another doctor friend of his have written books that discuss it. I work hard to eliminate any what-if or negative thoughts. Although I've been through some rough times myself, I have mostly retained my positive attitude as well as my health. I hope you have an easy recovery and get back to your normal life very soon.

Biomarker testing ought to be standard practice, but you should confirm that they will be sending tissue samples for both biopsy and biomarker testing. Good luck with your procedure.

Hi Lop, I was diagnosed 2 years ago too, in October 2019. I'm also on Tagrisso and NED. My primary doctor was the one who broke the news to me but she said that lung cancer isn't a death sentence anymore. I didn't drive her out of medicine, I still see her for routine checkups. Glad you're doing well!

Great news, congratulations! FYI, my late father was a pressman at a paperboard company for his entire career, in a factory setting that sounds a lot like yours. While he did have COPD late in life, he lived to age 99. Wishing you many years of good health.

I'm late to this thread but I agree with Michelle. Tagrisso alone can give Emily's mom good results. I've been on it for 2 years for Exon 19 deletion.