Jose Posted November 2, 2016 Posted November 2, 2016 Hi all . mother was diagnosed with stage 4 Dr. Says it is not a genetic mutation. It Is a stage 4 because it has fluid outside of the lung. Doctor recommended to start chemotherapy ASAP using carboplatin and methotrexate. Reading online is very scary as I did not find anything positive. Please anyone that has any information on where we should go for a second opinion or what to expect , advice everything is appreciated. Thanks in advance ! P.s.we live in New York city area Quote
Donna G Posted November 2, 2016 Posted November 2, 2016 Welcome Jose, so sorry to hear of your mothers diagnosis and staging. I was 3B because my tumor was pressing on the lining of my lung and nerves that were running down my arm at the shoulder. I started with chemo and radiation also. Nearly 19 years later I am still here. I pray she responds well to the treatment. I have never lived in New York but I did stay on Long Island with an Aunt and my cousins one summer, and went to the World's Fair but that doesn't help you with a Doctor recommendation. I am sure there are wonderful Doctors there. Keep us posted. Donna G Quote
Jose Posted November 2, 2016 Author Posted November 2, 2016 Thank you Donna ! Your reply is as water to the thirsty! Thank you for your wave of light I hoped & prayed to get at least one reply like this ! Now I have something positive to keep me going & more importantly share with Mom ! If I may ask did you take any supplements or natural treatment on the side? Thank you again ! you should always be healthy and happy! Quote
Susan Cornett Posted November 2, 2016 Posted November 2, 2016 Jose, I am also a Stage IV adenocarcinoma survivor and I did not have a genetic mutation. I was diagnosed in February and underwent four rounds of chemo following surgery. If you are reading survivor statistics, don't. My medical team reminded me that they are only statistics and are based on people who were diagnosed 5 years ago - who didn't have access to the six new drugs approved last year. Those statistics also don't take into account those who dropped out of or never participated in treatment. The most important thing to do is be a good listener for your mom, ask your medical team all of your questions and press for answers. Be your mom's best/loudest advocate. But most importantly, a good attitude is everything. If you get a chance, please go read any of the posts by Tom Galli. Like Donna, he's beaten the odds. Jose 1 Quote
Tom Galli Posted November 2, 2016 Posted November 2, 2016 Jose, Good advice by Donna and Susan that I completely endorse. Survival statistics are based upon dated information, some as old as 5 years ago. The statistician attempts to explain every cancer patient by applying an average or "mean" survival length projection. The fundamental problem with that approach is it fails to take into account that as individual patients, we all are different. We all have an individual reaction to treatment and that individual reaction cannot be expressed or accounted for in an "universal average" or an average that considers all diagnosed lung cancer patients in a given period. Donna's lived 19 years despite what was likely a very small (say single digit) probability of surviving 6 months. I'm 12.8 years when given about a 15% probability of surviving 5 years. And, Susan's advice about being your mother's advocate in her fight is spot on. Stay the course. Tom Jose 1 Quote
Donna G Posted November 2, 2016 Posted November 2, 2016 Jose in reply to your question as to whether I used natural treatments or took supplements.--------- Those were not talked about 19years ago. One thing I did do was pray every day. I also was on the prayer list at my church. Today they talk a lot about how being positive , getting good nutrition, finding healthy ways of getting rid of or decreasing stress. These are all important I believe. Donna G Quote
Jose Posted November 2, 2016 Author Posted November 2, 2016 Thank you so much for sharing your experience and for your dedication and advice! Every post gets us stronger and smarter! Mom got folic acid to prepare.... then she will start carboplatin with methotrexate .( these two particular meds have been around very long....Dr. didn't offer any positive...that was hard to swallow but maybe he did it just to protect himself ...... or I was just too scared in my own box...) I am so relieved hearing your story that gives strength & hope. Please shere if you took any supplements that helped you get over it physically or emotionally. I Feel that I should give Mom something at least for her energy & for the side effects... Can anybody share if they took something that might work. I understand that posting with names Maybe hard for some people (including me). You may post anonymous but please share as it may help others. Thanks again Quote
Tom Galli Posted November 2, 2016 Posted November 2, 2016 Jose, Be very careful with supplements and chemotherapy. Make sure your mom's oncologist and oncology nurse know all the medication your mom is taking, including supplements, before she has her chemo. I didn't take any supplements during chemotherapy. Now, I only take Magnesium to address low Magnesium blood levels caused as a side effect by chemotherapy but I take the Magnesium as a result of my doctors instructions. Stay the course. Tom Quote
Jose Posted November 14, 2016 Author Posted November 14, 2016 Hi mom started chemo last week first two days where ok...Now the side effects are kicking in any advice how to keep on top of it?Nausea, vomiting, constipation,And she is sweating buckets does anyone have any ideas?She got Zofran for the nausea which she takes and makes it a little better.....But how can we battle the other side effects any advice is appreciated.ThanksSent from my SM-G930P using Tapatalk Quote
Tom Galli Posted November 14, 2016 Posted November 14, 2016 Jose, It is best you tell your mom's doctors about nausea and vomiting. These are common side effects and the docs should be able to prescribe effective medicine to help ease her problems. You can help however. Encourage your mother (or do it for her) to capture the time the nausea and vomiting symptoms start after infusion. Once you know the number of hours after infusion, she can take her medication about an hour earlier than the start of symptoms. When I learned this tip from my chemo nurse, I had no problem with nausea. Sweating is a different problem. Does she sweat when she sleeps? If so, it is important you share this symptom quickly with her doctors. Sometimes this symptom is associated with reduced efficiency of your mother's pulmonary system. Your mention of fluid on the lungs is another indicator. Ensure you report the sweating symptom to her doctors quickly. It could be a harmless reaction of her body to the chemotherapy, or something else. Stay the course. Tom Quote
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