Oneblessedmother Posted February 3, 2017 Share Posted February 3, 2017 Hi - I'm joining this forum to find out more about Adenocarcinoma and Women that never smoked. My mom was diagnosed on 11/29/2016. That day changed our lives. My mother fell and broke her femur and once we rushed her to ER the doctor reviewed her x-ray and said her femur should never break that way. From there he ordered a CAT scan which showed lesions on the femur. The next response from the doctor was it didn't start there, so he ordered an upper body scan which found it in her lung (source) however it was also in her spine, and ribs. Mom has had surgery since to repair the femur but recovery is not the only obstacle. The emotions of knowing you have cancer in so many places are overwhelming. In early December they determined she had it in her brain as well. They did WBRT for 10 sessions and she didn't have any side effects until a week after, where she lost her hair in one night and her scalp became very tender. Doctors recommended Aloe Vera and Aquaphor to soothe the skin. We just applied it yesterday so we're hoping it helps. Mom was informed that she does have the EGFR mutation which allows her to have the chemo pill rather than standard chemo. We're hoping the side effects won't be as extreme as traditional chemo. Has anyone taken Gilotrif and had positive (or not so extreme effects)? Can you give me some background or suggestions? Background on Mom: Mom is only 72. Thankfully, mom is a very strong woman she has pain but tries not to complain. She was semi-active before the fall and only noticed what she thought was arthritis pain or osteo pain from aging. She hasn't lost a pound she still has an appetite and after WBRT some of the cognitive thinking and some memory patterns returned, but depression keeps creeping in from time to time. I'm confused about a few things. I read a lot on this version of cancer and it's astonishing to me that one article stated it is now the #1 cancer for women. Why hadn't I heard of this before? Why aren't women warned? We're warned not to smoke but this cancer affects those that don't smoke. What kind of warning could people that don't smoke have received? I'm devastated that my mom is going through this. We have to keep our faith in God and sometimes we won't understand until later. Any suggestions about anything helps. Thanks for reading!! Quote Link to comment Share on other sites More sharing options...
Tom Galli Posted February 3, 2017 Share Posted February 3, 2017 Oneblessedmother, Welcome here. Unfortunately, some 15 to 18-percent of we lung cancer survivors are "never smokers". Your mom is Stage IV adenocarcinoma and her tumor displays the EGFR mutations. Let's start here. She is undergoing targeted therapy to attack her cancer through the EGFR mutation. Here is information about targeted therapy. I was diagnosed 13-years ago and well before the discovery of cancer genetic tumor markers. Moreover, my type of NSCLC -- Squamous cell -- does not respond to discovered targeted therapies so I have no direct experience with Gilotrif. Others here do and I'm hoping those that do will chime in and give you first hand experience about the drug. In the meantime, here is some relevant information about Gilotrif. Whole Brain Radiation Therapy (WBRT) tends to temporarily affect cognitive function but it normally works. So does Gilotrif. You mom may receive another drug -- Zomenta -- by infusion to harden her bones against the effects of tumors. This drug also works. Therefore, I conclude you've got lots of reasons to expect good outcomes from her treatments. But, let's dwell on outcomes for a moment. One I experienced was depression because my battle was lengthy and fraught with many recurrences. I also experienced many no evidence of disease (NED) windows during treatment and failed to take maximum advantage of the opportunity of enjoying life during these periods. I now know that lung cancer treatment often extends life. No one knows for how long, but for most there is a significant extension. Your mom chose treatment in in choosing treatment she's choosing life. I believe it important for her to do something she enjoys with the extension she receives. Help her to enjoy life both during treatment and while surfing NED. Now to your expressed concern about never smokers and lung cancer diagnosis. I wrote a book that included lots of information about lung cancer and the stigma about self-inducing that allows the medical research community to ignore our fair share of research funds. Lung cancer is now the number one killer of all cancers for both men and women. It is closing in on heart disease yet is almost ignored in research funding. Here are two tables from the book -- Scanziety -- that summarize the number of deaths by type of cancer and the lack of research funding for diseases that are self-induced. You might consider a letter to your elected representatives pressing for research equity for our disease. Stay the course. Tom Oneblessedmother 1 Quote Link to comment Share on other sites More sharing options...
Oneblessedmother Posted February 3, 2017 Author Share Posted February 3, 2017 Tom Thank you for the information and encouragement for mom. She will begin Zometa on Tuesday next week. Depression seeps in every now and again but we are doing everything possible to keep mom encouraged. It's so surprising that there isn't more research but I will definitely begin my research to contact elected officials to start the conversations. I'll keep updates after mom starts Gilotrif and Zometa next week. Thanks again looking forward to hearing from those that use/used Gilotrif. Quote Link to comment Share on other sites More sharing options...
Oneblessedmother Posted February 3, 2017 Author Share Posted February 3, 2017 Tom Thank you for the information and encouragement for mom. She will begin Zometa on Tuesday next week. Depression seeps in every now and again but we are doing everything possible to keep mom encouraged. It's so surprising that there isn't more research but I will definitely begin my research to contact elected officials to start the conversations. I'll keep updates after mom starts Gilotrif and Zometa next week. Thanks again looking forward to hearing from those that use/used Gilotrif. Tom Galli 1 Quote Link to comment Share on other sites More sharing options...
MaryTD777 Posted February 4, 2017 Share Posted February 4, 2017 OneBlessedMother, I'm glad to see that your mom is having treatment that seems to be having good results. I know many people, many women, who- like Tom have lung cancer that was found more than a decade ago. I pray she will have at least that long to enjoy life with you. As to why people don't know... part of the problem used to be that we don't have the numbers to make the noise things like pink ribbon campaigns can make. Trust me, if I had a big lottery win in would have commercials playing on every network in the country telling the world that if you have lungs, you can get lung cancer! No matter your age, job or gender!! I have seen an 8 year old boy, 10 year old girl. Mother & daughter at 50something & 30ish both battling non smoker (I think) & the mom just passed, like her parents did before her. It can be genetic. It is evil & seems to know no limits. Some day the general population will believe us. Right now many just sit back in their make believe world's, pretending that non smokers but have really been closet smokers & deserve what they got. Too bad they forget smoking can also cause breast, stomach, oral, esophageal etc etc etc.Sorry. I get a bit grumpy about this topic... even though I smoked! Take care Mary Sent from my SM-N920V using Tapatalk Quote Link to comment Share on other sites More sharing options...
Oneblessedmother Posted February 4, 2017 Author Share Posted February 4, 2017 Thank you Mary. As you stated its great to hear from survivors like Tom. It just astonishes me that this isn't something broadcasted more. I've seen the medications on commercials but making people more aware is just as important. I'm praying daily that these medications will work and mom can have a longer enjoyable life. We're still in the beginning stages of treatment specifically for fighting the many areas of cancer in her body. Sadly, mom found out she had cancer and it was already Stage 4 and in both lungs, spine, both femurs, ribs, pelvic area, and one tumor in her brain with many lesions too. It'sdevastating to see her suffer knowing and the pain it causes mentally and physically. My goal is to keep mom happy, and fighting. We originally were against Chemo but when they recommended the chemo pill it gave us a little more hope because most say it doesn't affect the body like traditional chemo. At this point we just pray! I can't wait to see better days for mom!!! Tom Galli 1 Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You can post now and register later. If you have an account, sign in now to post with your account.