Mommy's girl

Good morning.  My trip down the lung cancer road started with a persistent cough that didn't improve.  Initially, the pulmonologist thought it was my asthma getting worse.  Then late last summer and early fall, I had an upper respiratory infection that I just couldn't shake - cough, hoarseness, wheezing, fatigue, etc.  Finally in early December, I coughed up blood which took me to ER.  They found a mass in my left lung and my pulmonologist performed a bronchoscopy and said it wasn't cancer.  When it didn't go away (duh!), surgeon removed my left upper lobe and I was diagnosed with late stage cancer.  It was later discovered that I had mets to my thyroid.  
I'm sorry that you're in this position and hope and pray that yours is not cancer.  But let me give you this advice: ask questions and fight for answers until you get all the answers.  Don't let a doctor tell you that whatever it is, it can wait.  If there is something there, it should be biopsied.  Some physicians still proceed as though we can't be candidates for lung cancer because we're too young, or we don't smoke, or we don't fit other risk factors typically associated with lung cancer.  Truth is this - if you have lungs, you can get lung cancer.  Please keep us posted on your next steps and results.

Lbelle78, I'm so saddened to hear this news. so many hugs and prayers being sent to you and your family. <3
I tested ALK+ as well, shortly after my lung cancer recurred in January. Now I'm taking Xalkori, one of the targeted drugs they use specifically for ALK+ NSCLC. (my point isn't to talk about myself, but to tell you that, once you have time to digest this incredibly emotional burden that's been thrust upon you, there are several treatments available. Researchers are looking at this mutation, and we are reaping the benefits. <3
I'm happy to hear you will get a 2nd opinion. I hope, if your insurance and finances allow it, that you will consider a specialty center. A doctor who specializes in ALK would be so beneficial, and I'd bet there is some sort of long distance treatment available so you don't have to move (I've heard of some patients having plans written up and sent to their local providers, etc). 
Regarding your oncologist's lack of hope: there is hope. There is so much hope, and so much opportunity for life and love and watching your beloved children grow, and standing by your husband's side as the two of you grow old together. 
I read an article the other day, and linked it below. I had been looking for information on the ALK mutation, and here I happened across the story of a young man who was diagnosed with Stage IV, ALK+ NSLC while in his twenties.
Spoiler alert: There is always hope!
http://www.curetoday.com/publications/cure/2015/lung-2015/hitting-a-target-in-advanced-non-small-cell-lung-cancer?p=1

Hi, I am sorry that you have received this devastating news but do know that being ALK positive means that you likely will have multiple treatment options. Also know that lots of us mutants have outlived predictions. I was diagnosed at the age of 45 in 2005---I am ALK+, have been stage IV for most of my journey, and I just marked 12 years since diagnosis. Check out my blog if you'd like more information about living (for a long time!) with ALK+ lung cancer: www.outlivinglungcancer.com  You are not alone. xoxo Linnea

After going in Friday for a robotic upper right Lobectomy, I woke up to learn that the surgery could not be completed because the surgeon saw spots in the lower lining of my lung. He completed a small wedge resection for biopsy and closed me up. My family and I have been heartbroken to put it mildly. This jumps me from a "curative" stage 1 to stage 4 at age 38. I do have the ALK mutation, but the oncologist today was not very hopeful. We have cried all day long, and my poor husband sobbed for an hour driving back.This is so unbelievable after being so excited for a good outcome. I so want to be here for my children and family.

Marc,
 
My wife has undergraduate and masters degrees in nutrition (dietetics).  She is my caregiver and her two sustaining messages during my treatment were:  eat something (during chemo side-effects) and eat lean protein, whole grain, fresh fruit and vegetable at every meal.
 
There were times during chemotherapy when I completely lost my appetite.  This period lasted about 3 days and Martha went to great lengths to get something into me.  She made ice cream that actually tasted pleasant during chemo - Mint Chocolate Chip Ice Cream. (It is not one of my favorites now so chemo likely altered by taste buds). It was about the only thing I'd eat during this period. Calories were very important with my body struggling to make red and white blood cells that were wiped out by chemo.  
 
When I felt well enough to eat, breakfast became a spinach omelet, and a cup of Cheerios with fruit (no sugar) . (There are hundreds of vegetable omelet combinations - try sautéed asparagus tips). Lunch was a cup of vegetable soup and a turkey bacon BLT with whole wheat bread and sliced fruit (apple, pear, banana, or peach).  Dinner was lean roasted pork with wild rice, and green peas with onions and mushrooms and sliced fruit for dessert.  There is something about presenting sliced fruit at the dinner table that makes it more appetizing.  To give flavor for the lean meats (chicken, turkey and pork) she'd sear and caramelize one side of the meat in a very hot cast iron skillet, turn and then finish cooking in a hot oven in the skillet.  Sometimes she'd make a pan sauce using the skillet drippings with water and seasoning or white or red wine.  She placed the meat on toasted whole wheat bread and spoon on the pan sauce!  She encouraged me to snack on lightly salted peanuts or almonds (for my chemo induced Magnesium deficiency) and or fresh fruit.  Martha also loosened the rules and allowed the occasional pizza or spaghetti and meatballs!
 
She also charted my weight twice a day, morning and evening, and we could see variation during the periods of dull appetite.  I could loose 5 to 8 pounds during this period.
 
There is a lot of advertising on organic, fat free, diets and the like.  I like Martha's simple solution - lean protein, whole grain, fresh fruit and vegetable at every meal. It worked for me.
 
Stay the course.
 
Tom

While preparing breakfast for myself yesterday, I had a thought... 
 
The question that triggered the thought was...  why does it have to be so hard to eat healthy?
 
After pondering on the question and figuring out what I would ultimately eat for breakfast, it hit me...  There are a lot of cancer patients, ex-cancer patients, people who have cancer in their family, etc. (millions and millions).  Why isn't the market place doing more to help us eat better.
 
With that in mind, I've decided to tackle this problem.  But, before I dive in to far, I wanted to see if anyone knows of other people/organizations which might also be trying to solve for this?  I work in the Consumer Packaged Goods industry (big fancy words for food) and want to kick off an initiative to challenge the industry (food companies and retailers) to help us eat better. A few thoughts...
 
1) carve out a section in grocery stores for food choices/options approved by notable cancer centers (i.e MD Anderson, etc.)
2) encourage food manufacturers to create/distribute foods that are cancer friendly (preventive, chemo complimentary, etc.)
3) put simple and cost effective ideas/recipes in our hands (mobile app, kiosk, in aisle,etc.)
4) encourage manufactures/retailers to donate product/dollars to help those less fortunate eat healthy (control the controllable)
 
Through and initiative/challenge like this, greater awareness of lung cancer (all cancers) could be achieved.  People are watching less and less commercials on tv these days due to TiVo and the like, however people are still walking the aisle of grocery stores everyday and are a captive audience.
 
Any thoughts?  Any advice?  Any connections (retailers, manufacturers)?  Anyone interested in the endeavor?
 
Thank you,
Marc
 

Hang in there, Susan! I've been there. I had the daily radiation with weekly chemo, too. Mine was for cervical cancer and the worst of it was my digestive system REALLY objected to it.  I understand the need to vent. When my hair started going, I had a short buzz cut. It was less upsetting than waking up with chunks on my pillow or having a bunch come out when I combed it. Getting it off all at once gave me some sense of control. I got a wig (cheap one!), which I wore rarely. I really got into hats and scarves, though,  indulging myself in quite a few.  A couple of the nicer ones I still wear. Yep, you're right that you need o do (and can do, and will do!) what ever it takes. Hair is just hair --although sometimes it doesn't seem like it 
All my best to you,
Bridget

Stay strong, sweet girl, you've got this!

I was on Tarceva for six years, the best relief from the rash is Eucerin Cream Original. For stomach issues I took my Tarceva in the middle of night, I also took Imodium and probiotics daily. We have a targeted therapy and EGRF group on Facebook sponsored by Lungevity. Good luck, Don

Hi mommy's girl.. your story hits close to home with me. My mom was diagnosed with NSCLC March 17, it was a shock to say the least as my mom had no symptoms until abdominal pain landed her in the ER.. fr there they found her cancer in multiple places. I hope you and your mother are doing well.

Sent from my N9518 using Tapatalk

Hi, Mommy's Girl,
Welcome to LCSC. We are glad that you found this community too. Just wanted to check in and see how you and your mom are doing? Hope to hear from you soon.
With gratitude,
Lauren
--
Digital Community Manager
LUNGevity Foundation

Mommy's Girl,
Welcome here and so very sorry to learn of your mom's diagnosis. I had Tarceva as one of my chemo treatments but not with the complication of renal disease. I wouldn't begin to know the complications involved. I trust her oncologist has performed the research before prescribing the medication. 
I hope Tarceva works. I've know many who've had a very good response. 
Stay the course. 
Tom

Ok, against all odds my ebus on the PET SUv Max 4, 1,3 cm hilar R lymph nodes came back negative (Thoracic surgeon was nearly certain I was going to be positive and stage 2a or worse). That followed my ct that showed my SPN in lung declining in size from 7.2mm to 6mm in 45 days on its own (in volume terms that is a significant 42% deciline).. But I know every time I think I am ok, some bad report comes my way so I am still fearful. Will follow with another CT in 45 days.  In the interim, I still feel like my ride side is sore from my neck to my lung and cant help but be reminded of my problem each day. Draining on me. We watch and wait. But I will take that over confirmed cancer any day..

Dear Mommy's girl,
 
Sorry for your mom's illness. Here is a link on reviews that may cheer you up.
https://www.drugs.com/comments/erlotinib/tarceva.html

I really appreciate the time each of you have taken to respond to me. It really makes me and my family feel like we are not alone. We received a little update on the treatment that my brother will be begin to receive. Starting tomorrow, 1/8/17, they will begin target radiation on the area of his spine where he is feeling the most pain. They will be doing it Monday through Friday, have him rest for the weekend, and then five more days. So it will be 10 days total of radiation on the specific areas in his spine. The oncologist expedited the biopsy results and said that we will have some news hopefully on Thursday. My brother has been in the hospital since Tuesday last week (1/3/17) and his vitals have been great. Hopefully he will be discharged tomorrow after his first target radiation. It's been very hard for him and we all have been very strong for him. We have shared with him stories of survivors who had the same prognosis as him and it has given him a different outlook. Today, a nurse who had stage IV cancer but beat the odds, came to visit him and gave him a few words of encouragement. He has his ups and downs, but the uncertainty is the most feared. If anyone has any advice on what else will help him, please let me know. Thank you. 

Thank you for your response. Yes they said they will start chemo this coming week everyday. But we are hopeful that the other results of the biopsy comes out with a more specific treatment for the cancer in the different areas. After every test it seems like bad news after bad news. It's hard to keep someone optimistic in the midst of negativity. Of course we can see the reality of the situation, but what frustrates me the most is how a doctor can say "his days are numbered" and hasn't even STARTED a treatment. Anyway, we will be praying and patiently waiting for the results. 

Good morning all,
My brother was diagnosed with cancer last week right after Christmas. He is a 48 year old healthy, strong man who never smoked or drank, but took care of his body and ate healthy. In Oct. 2016, while at the gym, he thought he hurt his shoulder while lifting weights. He had muscle pain so he went to the doctor and was prescribed pain medicine and physical therapy. He did all of that and it didn't work. Then the pain started to run down his spine and lower back and all around his neck. He went to the doctor again and they prescribed stronger pain medication and it also didn't work. He then insisted that his doctor do an MRI. The doctor then called my brother on the phone Dec. 28th and told him it looked like cancer. Dec. 29th went to the oncologist and on Dec. 30th he did a MRI and PET. On Jan. 3, oncologist confirmed it was cancer and metastasized to his bones and specifically his spine. That's what was causing the pain. We checked him into the hospital to get the process started immediately and that day they did a full body MRI and MRI of the brain. That very same night they told us that it had spread to his brain and all along his spine. On Jan. 4, they did the biopsy of the lung tumor which is about the size of a quarter. Yesterday we found out it was non small adenocarcinoma of the lung stage 4 and it's very aggressive. They sent off a sample to see if there is any mutation. Today we received news that it has spread to his liver and they will begin target radiation on the tumor in his spine on Monday so he could at least walk without pain. He has never had any medical problems and he was fine last month and now he's in a hospital and the doctors are saying that his days are numbered. This has been the hardest news ever but if anyone out there could give us some hope, we would greatly appreciate it. I know we can fight this horrible disease. I will update and let everyone know of the treatments and hope there could be wise counsel for us since this disease doesn't run in our family. Thank you. 

Hey there! My appt. with surgeon was moved up to this Thursday May 4th. At first I was really glad. But today is a different story. I can feel the anxiety & reality in the fact I have lung cancer. I am upset- now wondering if surgery or treatment is even worth it. I have watched several family members go through surgery & treatments for various types of cancer. My husband passed away almost 9 years ago from lung cancer. He had radiation & chemo right up until the end. Quality of life was poor. My mother & grandfather both died from colon cancer. My Mom lived 2 weeks after diagnosis & my grandfather 6 months after diagnosis. I have had 2 cousins with breast cancer. they are doing well. I guess I am just a bundle of nerves right now. I am not sure of what I want to do. Just thought I would vent & put my feelings out there. thanks for listening to my rambling.

I hear about the stage of lung cancer but dont understand if there is a grade to it or just under nsclc adenocarcinoma stage 3a... I had a sarcoma cancer biopsy from my leg 5 years ago and it was a high grade tumour which was treated with 5 weeks of radiotherepy and 2 surgeries ...ive never thought to ask the oncologist this question ...
 
Sent from my SM-N920I using Tapatalk
 
 

Hi, 
    This is my second time to post here. The first thread I started did not generate as much response, probably because my mom's case is a bit unique.
     Ok to back track a bit. I'm the primary caregiver of my mom who was diagnosed with Stage 4 NSCLC on March 3rd. She had pleural effusion on her left lung that needed to be drained. The fluid that was removed was sent for testing and came back positive for adenocarcinoma. More testing was done and about a month later the results came back positive for an egfr mutation that made my mom a good candidate for Tarceva. 
     She started taking it on April 13th. We're a bit anxious about the side effects because my mom, who is 78, is suffering from a host of other medical issues. She has end stage renal disease dialyzing 3 times a week, is a diabetic, hypertensive, and anemic. I was hoping that there's someone in this forum who is in a similar sutuation as her who could share his/her experiences with us, but so far no such luck has come to us. 
     This time I'm hoping I could get replies from forum members who are taking Tarceva on how they coped with the side effects. I would like to know what they did to relieve themselves of this dry cough and scratchy throat that's been my mom's main complaint so far. I know the side effects vary from person to person but I'm curious if NSCLC sufferers have general similarities in their side effects from this targeted therapy. Also, does Tarceva have a life span when it comes to efficacy? 
     I have so many other questions because this is the first time someone in the family was diagnosed with this disease, but right now getting answers is more important. Thank you so much for taking time to read my post. 
 

Isaut,
We were all hoping for a better outcome for your stepfather.  It is fortunate, you are allowed to take a leave of absence to care for him as he experiences this change in life cycle.
Hope is so very important to a lung cancer survivor and to those that care for the survivor.  Often, it is our only reliable treatment method.  So, we invest in hope and it becomes very hard to pair back the investment.  This, and your love, are likely the reasons you are finding difficulty accepting progression and its consequences.  But, there are only two universal and predictable aspects of all life:  birth and death.  
Ensuring a comfortable transition is so very important and I can tell you will excel in this process.
Stay the course.
Tom

Hi! I'm so happy to have discovered this community. Last March 3rd my mom, who is 78 years old,  was diagnosed with Stage 4 non small cell lung cancer. It was a devastating diagnosis for us because on top of this, my mom has end stage renal disease (she goes on dialysis 3x a week) and other chronic illnesses. She will soon be started on Tarceva. I would appreciate any help or info about how Tarceva could affect someone on kidney dialysis. Is there any member who is in the same, or similar situation? Thank you and God bless.

Hi, 
    My mom, who is 78 years old, was diagnosed with Non small cell carcinoma, stage 4, on March 3rd. Based on her pathology results she is a good candidate for Tarceva. I've read about the scary side effects of this medication. Another cause for worry is how this drug would work with medications my mom is taking as a kidney dialysis patient. I would appreciate any information that anyone could share about this. Thank you and God bless.