Judy M2

The question of immunotherapy for EGFR was answered in today's EGFR breakout session of LUNGevity's International Lung Cancer Survivorship Conference. Immunotherapy is not recommended for EGFR patients. The patient will not receive any benefit from it. I strongly urge Kelvin's mom to get a second opinion.

Sorry, I missed this question. A quick way to raise BP is to drink a bottle of water at one time. My father's cardiologist gave him this advice a few years back. There are medications to raise BP if it's consistently low. One of the side effects of Tagrisso (the targeted therapy drug I take) is low sodium. I've learned to see my primary doctor for bloodwork that includes sodium, electrolytes and B-12. When my sodium was low, I used LMNT electrolyte powder (available on Amazon).

Everyone is different, but I seem to recall a reduction in cough after about 2 weeks of chest radiation (and 2x chemo). Of course, that's when esophagitis started, so the coughing was the least of my worries. Afterward, I developed a dry cough after 7 months on Tagrisso. My oncologist referred me to my pulmonologist, who diagnosed nasal allergies/post-nasal drip. Since then, I take Claritin daily and the cough is gone.

I said this in another thread, but a second opinion with an EGFR expert is in order. In the past, the Canadian health system approved Tagrisso as adjuvant therapy provided the T790M mutation was present. All that evidently changed in 2018, when Tag was approved as first-line treatment with no T790M mutation required (see link below). I still see comments in Facebook groups where non-US folks must have T790M to qualify for Tag in their country. I'm sure that the International Lung Cancer Survivorship Conference will discuss immunotherapy for EGFR+ lung cancer, it's a question that is continually asked in EGFR forums. https://www.astrazeneca.ca/en/media/press-releases/2018/health-canada-approves-tagrisso---osimertinib--as-first-line-tre.html#

June, other people are in your shoes. It's new, scary and the technical language is foreign to us laypeople. I've found that the more you can hear from experts, the knowledge starts to sink in. After watching many presentations, I have a working knowledge of terminology but admit that I still don't understand everything, especially about other mutations. I'll be watching the conference. This will be my third year!

Hi June, we all know what a shock it is to be diagnosed. I certainly was shocked when I was told I had Stage IIIB lung cancer in October 2019. It's important to have your biomarker test results when your treatment plan is established. You may have a genetic mutation that can be treated with a targeted therapy drug. My mutation is EGFR Exon 19 deletion and I take a daily pill. There are many Stage IV patients who are doing well for a long time. I've had No Evidence of Disease since April 2021 and although I'm not cured, I am healthy. So don't listen to Dr. Google and consider virtually attending LUNGevity's upcoming International Lung Cancer Survivorship Conference, where you can learn a lot in a short amount of time. Let us know how things go. Hang in there and try not to get ahead of yourself.

Jill, glad you have a treatment plan. Please be sure to ask about your biomarker results to see if you have a treatable mutation.

Good for you, Kamoto. You may or may not get side effects. The best advice I can give you is to moisturize well. Tagrisso dries out skin, hair, nails and your eyes too. Tagrisso gave me nasal allergies, so I take Claritin daily. They say to drink lots of water but you'll want to watch your sodium/electrolytes if you do. Report all side effects (if you get them) to your oncologist. Consider taking it at night to eliminate daytime drowsiness or fatigue. Tagrisso has been very good for me. Hope you get great results.

Hope, I was 66 when diagnosed with Stage IIIB adenocarcinoma in October 2019. I'm 69 now. I've been through chemo and radiation and am now on a targeted therapy and have No Evidence of Disease (NED). Your dad's biomarker testing will determine his treatment plan. The waiting is difficult but necessary. If your dad is a member of the 9/11 survivor community (like I am), I encourage you to seek the benefits that are available to him. I can give you lots of information to start you off. He does not have to be a first responder. Waiting isn't unusual during a lung cancer journey, unfortunately. The best you can do is take the time to become knowledgeable about our disease. This site, the GO2 Foundation and the American Lung Association are good places to start. Register for Lungevity's upcoming International Lung Cancer Survivorship Conference, where you'll get current information. And stay away from Dr. Google!

This is really good news, Sajid. Many people take Doxycycline for infections and also acne/rash caused by targeted therapy. The side effects you mention are common with targeted therapy and they can be mostly controlled with medication and diet. I also have a small pericardial effusion that does not affect my O2. I just had an echocardiogram and everything is normal. If you're on Facebook, you might get information on coping with side effects in this private group: https://www.facebook.com/groups/targetedtherapylung/?ref=share Or post a question in that group. I'm sure you'll get some answers. Glad to hear about your wife's good scan.

GBJ, I've never had surgery for my Stage IIIB lung cancer that was diagnosed in October 2019. Instead, I had chemoradiation and am now on a targeted therapy with very good results. Immunotherapy would not work for me because of my EGFR mutation. You can certainly ask your oncologist about the next line of treatment should you have progression in the future. I hope you don't get to that point for a long time.

Yes, every time for 6 infusions, and it was my favorite part. I didn't have to take the dexamethasone once they determined I was not allergic.

GBJ, your doctor is probably focusing on your current treatment plan. Like Tom says, many people get such good results from immunotherapy that they can stop treatment after a while. I hope you get a good scan.

Kelvin, I don't think they followed protocol with your mom's infusion where she had an allergic reaction. My chemo nurse went by the book with dexamethasone and Benadryl. I had a Benadryl infusion every time before the chemo drugs and got a nice nap out of it. They should do the same with your mom.

Hi Jennifer and welcome. As Lou says, the biomarker results your mom will get from her liquid biopsy are essential for determining her next treatment plan. Just be aware that if those results show no actionable mutation, it would be wise to take a tissue biopsy and send that off for biomarker testing. Not all tumors shed enough DNA material into the bloodstream to be detected. Recent recommendations are to re-biopsy if possible at progression. I just turned 69, was diagnosed in October 2019 at Stage IIIB with EGFR+ adenocarcinoma. I had chemo and radiation first, then started on a targeted therapy in March 2020. I've been NED since April 2021. No one has ever told me how long I have to live--because they don't know. Part of your mom's biomarker testing will also reveal whether she is a candidate for immunotherapy. There are options for personalized treatment, so don't give up hope.

This Zoom presentation is happening today at 6:30 pm Eastern time about the evolving state of the science in EGFR+ lung cancer. Registration is at the link below. Copied from the Facebook post by the EGFR Resisters Lung Cancer Patient Group. https://us06web.zoom.us/webinar/register/WN_SRJKLyP9R9qqTpQCFzPvZQ I will post the recording as soon as it's available.

Kamoto, what is your EGFR mutation? Mine is Exon 19 deletion. I've been on Tagrisso for 27 months (after chemo and radiation) and am NED. I don't know where they get this stuff about Tag being toxic after a year. Yes, eventually cancer finds a way around Tag, but you could be on it for years and by then they'll have developed a 4th generation drug. If you're on Facebook, this private group has lots of information: https://www.facebook.com/groups/2098822473719352/?ref=share Everyone is different, and some people get longer results than others. I hope you get great results.

They typically put you on dexamethasone for one or two days before, the day of and the day after your first one or two chemo infusions until they know you're not allergic. Plus there is a Benadryl bag before the infusion starts. Hopefully this was a one-time reaction and she's feeling better now. They ought to be watching her closely next time.

Your mom should get a second opinion with an EGFR lung cancer specialist to confirm this is the right treatment plan. Even if it's a virtual consult. I'm not sure if the Dana Farber Chen-Huang Center for EGFR Mutant Lung Cancers in Boston, MA is still doing virtual consults for second opinions. Having said that, I don't know how the Canadian health system works and whether a second opinion is an option for you.

AZandMe.com is the manufacturer's financial assistance website. Your oncologist should be able to help you apply. Eligibility is based on income and you have to reapply yearly. I'm retired and on Medicare and have been eligible for the last 2 years. Many working folks get their Tag completely covered by their insurance.

I don't personally have experience with fluid but I know of others on targeted therapies who need to have fluid drained periodically. It can be annoying and uncomfortable. The good news is that if Gefitinib isn't effective, there are other targeted therapies that can be used. Fingers crossed for her next scan.

You should "attend" the LUNGevity 2022 International Lung Cancer Survivorship Conference in July. I'm sure there will be a discussion about immunotherapy and EGFR lung cancer. It has had disappointing results in the past but I know that researchers are giving it another look.

EGFR Exon 19 deletion typically does not respond well to immunotherapy. Targeted therapy is the standard of care. Some people start out with earlier generation drugs and get a long time with them. But I believe that treatment can differ in Canada. You might want to ask your mom's oncologist why a targeted therapy like Tagrisso (osimertinib) isn't being considered.

Headcovers Unlimited has a nice selection. I ordered some cute headcovers from them.

It really is true that "treatment is just a moment in time and better days are ahead", as you say! And I agree that a positive outlook is helpful. My oncologist is a big believer in the mind-body connection. Best of luck with your next steps.