CindyA

"I thought I pulled a muscle..." Please watch this video and listen to Tommieann's wisdom.


 

If you've been diagnosed with lung adenocarcinoma, or another form of non-small cell lung cancer, your doctor may have recommended genetic testing. But from people I've spoken with lately, this is very confusing.
(First of all, if you have non-small cell lung cancer and your doctor hasn't ordered testing, talk to her. There is now a general consensus that everyone with advanced or metastatic lung adenocarcinoma have genetic testing (biomarker testing) of their tumor. Yet a recent study found that only 60% of oncologists are following these guidelines.)
The confusion comes from what many of us think about when we think of genetics and gene mutations - something is passed down through families. There are 2 basic types of mutations. The first is hereditary. This is the kind of mutation you inherit from your parents, and is the kind of mutation that is getting a lot of attention in regard to breast cancer. The second type of mutation is acquired. In the process of becoming cancerous, cancers develop many gene mutations, and in fact it is these mutations that cause the development and growth of cancers. These mutations are not present from birth and are not passed on to children.
The importance of testing for mutations is that treatments are now available - both approved drugs and those available in clinical trials. The approved targeted therapies include Tarceva (erlotinib) for people with EGFR mutations, and Xalkori (crizotinib) for people with ALK positive lung cancer.
Since this topic is so confusing, the article below takes you step by step in understanding why genetic testing may be important for those with lung cancer.
http://ow.ly/vBmgk

From the time of diagnosis, the lung cancer patient is thrown into a world of often unfamiliar medical language and concepts. LUNGevity Foundation has partnered with the medical experts at Global Resource for Advancing Cancer Education (GRACE) to help interpret complex medical language into easy-to-understand language. We also provide services such as the Ask the Experts online message board, and blogs, webinars, podcasts and videos on new developments in lung cancer and topics of interest to those navigating this disease. This enables lung cancer patients and their loved ones to better understand the medical terms, processes and latest advances associated with lung cancer research.
The generosity of our donors allows LUNGevity to offer these services at no charge.
http://ow.ly/tytBW

Once you or a loved one are faced with a cancer diagnosis, you have so many questions, fears and concerns. How am I going to get through this? Where do I begin? It's scary and not easy. We've turned to our WhatNext-ers, and asked them what advice they would give to someone who is newly diagnosed with cancer and needs support. They've been through it, hopefully their words of wisdom can help.
1. Assemble your team. They say it takes a village to raise a child. Well, it takes a team to beat cancer. Once you accept you have cancer and have a journey in front of you, it's time to assemble your team. The team isn't just doctors and nurses, but also family and friends, and even strangers. There are so many aspects of the journey ahead that you can never prepare for. Accepting help and gathering a support system is critical. It also helps to know you are not alone in the journey. -- CarolLHRN
2. Know who you can let your guard down with. Emotional health is so important and often ignored by many providers. Make sure you have someone to talk with and don't be afraid of all the emotions you will experience from fear and sadness to laughter and joy and everything in between. To have the strength to move through the journey, your mind has to be strong too. -- CarolLHRN
3. Be selfish. Be very selfish, you need to put yourself first. Put together a laundry list of things that need to get done now and tell a friend. It is perfectly OK to do so. Then, let go all the negative thoughts, acts and things. -- cranburymom
4. Take control. This is your life and you control what is done to you. Ask questions. challenge answers, and research what you are told. Second and third opinions are good choices. Keep your family close, thank well-wishers, trust in God, and deal with the emotions as they come along. -- emtp12
5. Give yourself a break. So what if your house isn't perfect, the cupboard is bare, or you don't have clean underwear, you can worry about all of that later. Don't be afraid to accept help, if people don't really want to help they shouldn't offer, I personally didn't go to Wal-Mart for months and my husband and I survived, so what if he bought the wrong brand of toiletpaper. Also, it is ok to freak out, it is ok to be scared, and it is ok to be angry. You also have to do everything you can to make educated decisions and do what is right for you. Don't second guess yourself. Do the best you can with what you have and what you know. -- grams2jc
6. You are alive - live! Remember that you are still alive and your family needs you. Be selfish with your energy level and with doing things that are not totally necessary, but hoard what you do have to make time for your close friends and family. It's so easy to fall into depression and to be overwhelmed, but right now you are still here and you need to treasure that time! -- danellsar
7. Take care of youself, and that means crying, too. Allow yourself to freak out and cry once in a while. But give yourself a certain time of day to do it. Allow it to own a place in your life, give it it's own freedom and then put it away and focus on your goals. Take care of your body - eat well, get the rest you need when you need and by all means rely on the kindness of others. No one knows what to do with you. They try to help and sometimes it seems overwhelming but the relief you experience by just saying "yes" even if it's not in your nature and just allowing and letting go of it all. Sharing it with others is a way of healing. You need to get the disease out of your body. -- kimjx6
8. Have a positive attitude. Realize you are not alone. There are many of us in the same boat. Cancer does suck but in most cases it is definitely beatable-so gear up for a fight and keep positive. Push the worries aside and focus on each day as a gift, smell some roses, then just keep living your life. Life gets back to semi-normal--but you do change. Some good-some not so good. So watch the poor me syndrome-and finish the race. --indyeastside
9. Be ready for anything. I am losing my sight and at times my will. I am not a weak person but I do cry. It makes me feel better to get that stuff out even if the hurt feelings and worrying thoughts will come back. -- flyglo
10. Surround yourself with others who support you. If there aren't any, go find some. You play a huge part in your healing. Tell yourself you're going to be ok until you believe it. I dealt with losing my hair by praying, so when it was time to cut it, I was ok and I didn't cry. This should change your life for the better! It should change your perspective on life and make you realize what's really important. Only look at the positives. -- RebeccaLynn25

https://www.whatnext.com/blog/posts/10- ... ith-cancer

This is why I advocate. Here is a picture of my Grandpa TP (Thomas Payne). He was such a great Grandpa. I remember him letting me drive his pick up truck on the ranch when I was around 7 years old. He'd put me in his lap and let me steer the wheel. It was great! He also had a lot of stories about what he was like as a kid, the military, college and a judge. SO MANY stories. HA. I miss them now. I wish he could've met my Husband, they would've had a lot of laughs together. He used to call me Gertrude. I don't know why, but that was what I knew to answer to. He called my Grandma, Jane.Her name is Olga , she lives with my Mom & step-dad now...anyway... He would leave notes for her all around the house saying things like, "Tarzan go to ranch. Me love Jane". It was so sweet. He passed away the year after I graduated from High school. I'll never forget that day.

"I thought I pulled a muscle..." Please watch this video and listen to Tommieann's wisdom.


 

Getting the Most Out of Nutrition Counseling During Cancer Treatment
January 13th, 2014 - by Jessica Iannotta
Nutrition counseling has a tremendous value in helping patients and caregivers develop and manage a healthy nutrition plan. It has been demonstrated that nutrition counseling before, during, and after cancer treatment can help to improve outcomes.
How to select the right expert:
The title “nutritionist” is not a regulated or licensed professional title. Therefore, anyone can call themselves a nutritionist. It is important to only seek nutrition advice and participate in counseling from a Registered Dietitian (RD). An RD has had specific training in food and nutrition and has passed a national exam. He or she is also trained to provide Medical Nutrition Therapy (MNT), an evidenced-based nutritional treatment for your specific disease. Specific to oncology, it is also important to select an RD who specializes in oncology nutrition. You can look for the title “Certified Specialist in Oncology Nutrition” or “CSO” after his or her name. This signifies that the RD has had additional experience and training in oncology; a minimum of 2,000 hours are required in addition to passing a national exam with recertification every 5 years. If you are unable to locate an RD in your area, select the “Find a Nutrition Professional” link to find an oncology nutrition professional in your area. If you do not seek nutrition information from the correct source, you risk receiving incorrect or potentially harmful recommendations during cancer treatment.
What to Discuss With a Nutrition Professional
A typical nutrition consultation will involve several aspects. First, the RD will review your medical records for pertinent nutrition-related issues. He or she will then interview you and ask you questions related to your diet history, medical history, medications, allergies, and nutrition-related symptoms. He or she may also perform a nutrition focused physical examination that examines your oral cavity, height, weight, and body fat percentage. After taking into account all of this subjective and objective information, the RD will design a meal plan and nutrition recommendations specific to your individual nutritional needs. He or she will then ask you to follow-up in a reasonable amount of time in order to achieve the goals that have been set for you. You may be asked to keep a diary of your symptoms or of the foods that you eat in order to help the RD assess how you are meeting your goals.
Key points to remember:
Always seek information from a Registered Dietitian (RD), preferably one who specializes in oncology nutrition (CSO).
Be sure to inform and coordinate with your medical team to implement the recommendations that your RD has provided to you.
Follow-up with your RD in a timely fashion to ensure that you are able to meet your nutrition goals
Keep a food diary of your symptoms or the foods that you eat in a typical day; this will help your RD provide recommendations that are individualized to your nutritional needs.
About Jessica Iannotta:
Jessica A. Iannotta, MS, RD, CSO, CDN, Chief Operating Officer.
Jessica is a registered dietitian and certified specialist in oncology nutrition (CSO). She studied nutrition at Cornell University and completed her dietetic internship at NewYork Presbyterian Weill Cornell Medical Center. She obtained her Master’s degree through the University of Medicine and Dentistry of New Jersey. Jessica has worked in inpatient and outpatient oncology settings since 2001 and currently works part time at North Shore-LIJ Monter Cancer Center. Jessica is in charge of all operations including clinical and culinary operations ranging from menu development to evidence-based website content, relationships with registered dieticians and social workers and developing processes and protocols for intake, management and outcomes analysis of patients.
http://blog.lungevity.org/2014/01/13/ge ... treatment/

The US Food and Drug Administration granted accelerated approval to ceritinib (Zykadia) for the treatment of patients with metastatic ALK-positive non–small-cell lung cancer (NSCLC). About 2% to 7% percent of NSCLC patients have ALK-positive disease. -
See more at: http://www.cancernetwork.com/news/fda-a ... LIVmQ.dpuf

I just wanted to say THANK YOU for all that you do here in the LCSC forums. You all are a vital part of LCSC! You are knowledgeable, caring, supportive and so kind. -Cindy
 

December 10th, 2013 - by Dr. Jack West
Why do we care about lymph nodes when staging lung cancer?
The simple answer is that they give us prognostic information (insight into the likely future behavior, the “natural history”, of the cancer). When you think of a cancer’s growth, there are a few potential ways for it to progress. It might progress right where it started, staying local. It might travel through the lymphatic system, kind of like debris swept off a roof and into a home’s gutter, and it might spread distantly to other parts of the body. We’re interested in getting a sense of how aggressive a cancer is likely to be overall, the engine behind its growth, but also whether it’s more likely to stay local or travel distantly.
The staging system for lung cancer and most others is called the TNM system, where T stands for Tumor stage (the primary cancer, where it started), N stands for Nodal stage (are lymph nodes involved, and if so, where?), and M stands for Metastasis stage (distant metastases, yes or no?). The M stage overrides the others — if a cancer has spread to distant parts of the body, it’s an advanced cancer, no matter how big or small the primary tumor or whether there are lymph nodes involved or not. But N stage is also quite important.
Essentially, the distance from the primary cancer to any involved lymph nodes, along with the number of lymph nodes that have cancer within them, help predict the probability that the cancer is able to get out of the area in which it started and spread to distant parts of the body, where cure is generally not something we can expect to achieve. Lymph nodes within the same lung as the primary cancer are called N1, and those in the mid-chest (mediastinum) between the lungs are called N2 if on the same side as the primary tumor, or N3 if on the other side or above the collarbone (lymph nodes outside of the chest are unfortunately considered metastatic sites, because they almost always occur in the setting of more widespread progression).
This numeric staging reflects the distance the cancer had to travel to get there, so higher number for N stage means greater distance and greater chance of spread to other parts of the body, and the stage is often dictated by the highest N stage seen, unless there is distant metastatic disease (which, as noted above, overrides other considerations and denotes metastatic/advanced cancer).
Basically, nodal status assesses the probability of a cancer to travel further, even if you don’t see evidence it has metastasized yet. It’s kind of like when my youngest son had wandered out onto the driveway after figuring out how to unlock the front door, open it, and walk outside. He didn’t quite wander into the street, but he had clearly shown that he had the skills to escape. Imagine that N1 nodal involvement is like finding him having unlocked the door, N2 is like opening it and starting to look outside, and N3 is like him walking down the driveway toward the street. (He is now 7 and at far more risk of video-game induced brain rot.)
While the number of lymph nodes involved is not formally part of the staging system, there are many studies over the years that have shown that prognosis is more favorable if one or a few lymph nodes are involved by cancer vs. many nodes involved. Lymph node involvement that is only microscopic has a more favorable prognosis than involvement that leads the nodes to become enlarged (as I think you would expect). And lymph node involvement by “direct extension” of a primary tumor just growing into an adjacent lymph node tends to be associated with a more favorable prognosis than having one or more lymph nodes involved by the usual method of traveling through the lymphatic system, so there is some space between the primary cancer and the involved nodes.
How does this change our management? Aside from providing important information about the probability of cure, such as the probability of the cancer recurring after potentially curative surgery or chemo and radiation, it helps provide clues about the relative weight we might want to give to chemotherapy vs. “local” treatments like surgery and radiation. For example, a cancer that shows a pattern of a 4 cm primary tumor but no lymph node involvement has provided a clue that it’s going to stay local and not be at as high a risk for distant spread as a cancer that is 3 cm but has spread to mediastinal lymph nodes on the same side as the primary tumor. The latter might possibly be treated with surgery, but chemotherapy is going to be a strong recommendation for just about any patient with N2 or higher node involvement, and it’s standard to recommend chemotherapy to reduce the risk of recurrence after surgery for a resected cancer with N1 (within the lung) node involvement, but not as clearly needed for someone with the same cancer but no lymph nodes involved.
For locally advanced (stage III) non-small cell lung cancer, lymph nodes are critical in selecting an optimal treatment. A single N2 node is in the realm that many experts would consider perfectly appropriate for surgery, but multiple N2 nodes or any N3 disease puts it in the range in which surgery is generally not favored. Instead, chemo and radiation are typically favored. This isn’t because we can’t find a surgeon to try to remove all visible disease, but rather that both multiple N2 nodes and N3 nodal disease represent a situation in which we need to concentrate on more than just the disease we can see. We need to be sure to cast a wide net to treat the disease we can see and the disease we can’t. Radiation treats a broader local area than surgery, as a general rule, and we can more reliably get in a meaningful amount of chemo when someone hasn’t just undergone a major lung surgery.
This is a big topic, so I’d welcome your questions. There are always individual circumstances, but I wanted to provide a general sense of why nodal status matters and how we use this information to prioritize one treatment approach over another. I hope that helps

Once you or a loved one are faced with a cancer diagnosis, you have so many questions, fears and concerns. How am I going to get through this? Where do I begin? It's scary and not easy. We've turned to our WhatNext-ers, and asked them what advice they would give to someone who is newly diagnosed with cancer and needs support. They've been through it, hopefully their words of wisdom can help.
1. Assemble your team. They say it takes a village to raise a child. Well, it takes a team to beat cancer. Once you accept you have cancer and have a journey in front of you, it's time to assemble your team. The team isn't just doctors and nurses, but also family and friends, and even strangers. There are so many aspects of the journey ahead that you can never prepare for. Accepting help and gathering a support system is critical. It also helps to know you are not alone in the journey. -- CarolLHRN
2. Know who you can let your guard down with. Emotional health is so important and often ignored by many providers. Make sure you have someone to talk with and don't be afraid of all the emotions you will experience from fear and sadness to laughter and joy and everything in between. To have the strength to move through the journey, your mind has to be strong too. -- CarolLHRN
3. Be selfish. Be very selfish, you need to put yourself first. Put together a laundry list of things that need to get done now and tell a friend. It is perfectly OK to do so. Then, let go all the negative thoughts, acts and things. -- cranburymom
4. Take control. This is your life and you control what is done to you. Ask questions. challenge answers, and research what you are told. Second and third opinions are good choices. Keep your family close, thank well-wishers, trust in God, and deal with the emotions as they come along. -- emtp12
5. Give yourself a break. So what if your house isn't perfect, the cupboard is bare, or you don't have clean underwear, you can worry about all of that later. Don't be afraid to accept help, if people don't really want to help they shouldn't offer, I personally didn't go to Wal-Mart for months and my husband and I survived, so what if he bought the wrong brand of toiletpaper. Also, it is ok to freak out, it is ok to be scared, and it is ok to be angry. You also have to do everything you can to make educated decisions and do what is right for you. Don't second guess yourself. Do the best you can with what you have and what you know. -- grams2jc
6. You are alive - live! Remember that you are still alive and your family needs you. Be selfish with your energy level and with doing things that are not totally necessary, but hoard what you do have to make time for your close friends and family. It's so easy to fall into depression and to be overwhelmed, but right now you are still here and you need to treasure that time! -- danellsar
7. Take care of youself, and that means crying, too. Allow yourself to freak out and cry once in a while. But give yourself a certain time of day to do it. Allow it to own a place in your life, give it it's own freedom and then put it away and focus on your goals. Take care of your body - eat well, get the rest you need when you need and by all means rely on the kindness of others. No one knows what to do with you. They try to help and sometimes it seems overwhelming but the relief you experience by just saying "yes" even if it's not in your nature and just allowing and letting go of it all. Sharing it with others is a way of healing. You need to get the disease out of your body. -- kimjx6
8. Have a positive attitude. Realize you are not alone. There are many of us in the same boat. Cancer does suck but in most cases it is definitely beatable-so gear up for a fight and keep positive. Push the worries aside and focus on each day as a gift, smell some roses, then just keep living your life. Life gets back to semi-normal--but you do change. Some good-some not so good. So watch the poor me syndrome-and finish the race. --indyeastside
9. Be ready for anything. I am losing my sight and at times my will. I am not a weak person but I do cry. It makes me feel better to get that stuff out even if the hurt feelings and worrying thoughts will come back. -- flyglo
10. Surround yourself with others who support you. If there aren't any, go find some. You play a huge part in your healing. Tell yourself you're going to be ok until you believe it. I dealt with losing my hair by praying, so when it was time to cut it, I was ok and I didn't cry. This should change your life for the better! It should change your perspective on life and make you realize what's really important. Only look at the positives. -- RebeccaLynn25

https://www.whatnext.com/blog/posts/10- ... ith-cancer

10 Eggless High Protein Breakfast Ideas
By Jill Castle, MS, RD Food Allergies Expert  
Eggs are a wonderful and versatile breakfast item, but unfortunately, if you’re allergic to eggs, they are out of the question. Because eggs house a concentrated source of protein and a variety of nutrients, they may help to satisfy your appetite, and keep your weight in check. A high protein breakfast, containing 25 to 30 grams of protein has been associated with weight loss and maintenance of that weight loss in research studies.
 If you can’t have eggs, you’ll want to find egg alternatives for breakfast that can mimic these benefits. After all, high protein breakfast ideas without eggs may help you stay on track with your health and weight.
Try these 10 healthy breakfast ideas without eggs:
Greek yogurt. Greek yogurt is a strained yogurt, which results in a thicker texture and concentrated source of protein, up to 15 grams per cup.

 
http://foodallergies.about.com/od/livingwithfoodallergies/fl/10-Eggless-High-Protein-Breakfast-Ideas.htm?utm_content=buffere8a3a&utm_medium=social&utm_source=facebook&utm_campaign=cmsocialposting_aboutmain

The US Food and Drug Administration granted accelerated approval to ceritinib (Zykadia) for the treatment of patients with metastatic ALK-positive non–small-cell lung cancer (NSCLC). About 2% to 7% percent of NSCLC patients have ALK-positive disease. -
See more at: http://www.cancernetwork.com/news/fda-a ... LIVmQ.dpuf

Top down treatment: Why we prioritize treating brain mets over the chest/body disease in metastatic lung cancer
This morning, I saw a lady who was just diagnosed with lung cancer after developing problems with speaking that led her to the ER. There, she was found to have several brain metastases, then a lung mass that was biopsied and proven to be a new lung cancer. In talking with her and her family about how to proceed, I outlined a plan of starting with treating the brain lesions with radiation, then following with chemotherapy (she doesn’t have a driver mutation like EGFR or ALK). Why do we prioritize treating the brain metastases?
The simple answer is that they are a more pressing problem that set the pace if not treated quickly. Encased by a hard skull, the brain has limited real estate and is intolerant of being squeezed by metastases growing faster than the brain around it. If not treated quickly, problems like balance problems, vision changes, seizures, and eventually death can occur. While there is a lot more room in the chest or abdomen, making a delay in the start of treatment by a few weeks unlikely to make much of a difference, brain metastases need to be treated within days to a week or so.
You might ask, “why not treat brain and body at the same time, with both brain radiation and chemo (or targeted oral therapy) together?”. Yes, that’s a possibility, but that involves combining the side effects of concurrent therapies when there isn’t a clear value in doing so. Certainly, if a patient has just one or a few brain lesions and can get focal radiation like Gamma Knife/Cyber Knife in a single session, that can be done with concurrent chemotherapy and likely no additive side effects. Some patients may be motivated enough and/or hardy enough to do whole brain radiation and chemo at the same time, but there isn’t a clear advantage to that overlap. Instead, it’s most important to tackle the most imminent threat first, and that’s the brain metastases. The cancer in the rest of the body is important, too, but it usually be safely deferred until the higher priority brain mets are treated.
http://expertblog.lungevity.org/2013/11 ... ver-heart/

I just wanted to say THANK YOU for all that you do here in the LCSC forums. You all are a vital part of LCSC! You are knowledgeable, caring, supportive and so kind. -Cindy
 

I just wanted to say THANK YOU for all that you do here in the LCSC forums. You all are a vital part of LCSC! You are knowledgeable, caring, supportive and so kind. -Cindy
 

It was so great to meet you in person! I only wish we would have all taken a photo together! Hopefully we will see you at the National HOPE Summit in DC! 
 
Best,
Cindy

I watch Dr. Oz alot, but generally take what he says with a grain of salt. I think he provides a lot of anectodal information, but much of what he says, such as carbs increasing your risk for lung cancer, have not been put through a lot of rigorous scientific studies. I wouldn't believe it until I saw the scientific studies showing the correlations. That is just my sciencd background talking.
Jan

I had a right lower lobectomy about 4 months ago. Get into your surgeon immediately. That's not normal. Is it hot to touch? I'm no doctor, but you really need to contact his office
Sent from my iPad using Tapatalk

Richard,
 
Welcome.  I'm not a doctor but I believe Barb Jackson's advice is good.  See your surgeon as soon as possible. Swelling for a week to 10 days is expected but not after.  Something else is going on and it should be promptly checked.
 
Stay the course.
 
Tom

Lung Cancer Caregiving
 
Jamie Shull We all know the preflight instructions before an airplane takes off.
It’s something to the effect of donning your oxygen mask before helping others in your care. I believe those simple instructions are an appropriate analogy for anyone caring for a loved one with a serious or chronic health issue.
Take care of yourself so that you can adequately take care of those you care about.
When the words “you have cancer” are spoken, the world changes forever for the person diagnosed and for everyone who loves them. Any cancer diagnosis is devastating but I think lung cancer is especially so. I believe strongly that this is due to lack of awareness and funding for research. Lung cancer can be difficult to treat and can be very aggressive.  There is a misconception that lung cancer only affects smokers and that it is simply a “preventable disease”- that if you quit smoking or never start, you will be safe from ever getting lung cancer.  I know first-hand how untrue that is.
When one is thrust into the role of caregiver most often we don’t know what we need, let alone how to ask for help. We hear from people who offer sincere but vague offers of help (let me know if you need anything) while others completely disappear. Many times caregivers neglect their own needs and health because there is so much to do and only so much time. I know I did.
In my husband’s 20-month struggle to live I learned many, many things. Let me share the most important things that I learned about caregiving:
Most people want to help.....let them. Give people specific tasks that will help you (pick up the kids from school, help with taking my loved one treatment, come over for a couple of hours so I can leave, etc...). Ask someone to facilitate a meal preparation/delivery plan within your community of friends and loved ones. More than ever, it’s important for everyone in your house to eat healthy and there are much bigger things on your plate than planning/cooking meals every night. I think the most crucial lesson I learned was giving myself permission to get away from the situation and to take care of myself. It took me a long time to understand this and I teetered on the edge of sheer burnout several times. Getting away can be as simple as going to a movie, curling up with a book for an hour, going for a run, or whatever brings you energy. Doing things to nurture yourself is not selfish....it is about sustaining yourself for the long haul in the enormous task you have undertaken out of love. Find people who can listen, really listen, to what you are going through. For me that was certain close friends and a counselor who I could tell everything to- my fears, my panic and profound despair at the thought of losing the person I loved so very much decades too soon. I wish I’d also found a caregiver’s support group but there wasn’t one in my area at the time. When I asked about it, a social worker told me that caregivers are too busy and don’t have the time to meet- very telling. This may be the most challenging time of your life. You are stronger than you know. Never give up hope, for yourself or your loved one!  
Jamie Shull will be writing a series of caregiving blogs based on her experience as a lung cancer caregiver and advocate.  Jamie is also a LUNGevity LifeLine Support Mentor and shares her insight and resources to help others co-survive lung cancer.  Please leave your comments and topic suggestions below.
http://lungevity.org/support-survivorship/get-connected/blog/lung-cancer-caregiving

Hi Ari. Can you give us more details? Are the complications from the surgery or from follow-on treatment? What stage is he? I'm glad you're here. Lots of good folks here who like to help where possible.
Barb

Light a candle in honor or in memory of someone you know.
http://www.lungevity.org/su…/light-candle-in-honor-or-memory
 
   

Hi Ralph, this is a message that one of our LUNGevity friends was trying to send to you but her computer logged her out before she got a chance to post it. So she kindly asked that I post it for her. 
 
 
Hi Ralph,
 
After reading all of the comments, I have to say that you have gotten some top notch advise.
I love that most of them had little to no pain. Even after hearing that, it seems that you still have not scheduled your surgery.
​Maybe my tale will help. I had what is called a Pancoast tumor. Basically that means that it was way up in the tippy top of my lung.
​This actually helped me to find it relatively early, as it was compressing some nerves coming out of my spine, causing pain.
​Unfortunately, it was also growing up in between the vertebrae in my neck. I had to have chemo and radiation in order to shrink
it enough that it could be surgically removed. After I finished the treatments, the doctors needed me to wait 4 week
​before they could do a new CT scan that would show if the tumor had shrunk enough for surgery. All of the swelling had to have
a chance to go down for accurate pictures.
 
​I took that time to get away and planned a sort of "bucket list trip". Being a bird lover from NJ with not a lot of money
​but some pretty expensive wishes I decided that the closest "new bird" around that I could almost guarantee seeing
​would be a Puffin. They spend some time on rocky "islands" off the coast of Maine. I also had gotten a passport
​several years prior ~ ​shortly after moving in with my husband. I was determined that I "Would NOT die without ever
​having used my passport! So, since I knew that you must now have a passport to enter Canada, and Maine was
​MUCH closer to Canada than it is to NJ, we would also go there for 2-3 days.
 
​Just as we were approaching Canada my surgeon called my cell. The team had been looking at my various prior CT and
​PET scans and felt good about my being a good surgical candidate and wanted me to meet with a neuro/ortho 
​surgeon that they sometimes brought in from a nearby hospital. Could I come in Tomorrow?! No, I am 3 miles from
​the 2nd half of what may be my last vacation!! This is when they told me that he would be going on HIS annual
​vacation in a few days and they didn't want to wait the extra week because surgery always is done in the 3-5 week
​range and it could be very bad to delay much beyond that!!
 
Since we had driven and it turned out that they couldn't move the doc, ORs and several other things fast enough the
surgery was set for after the visiting surgeon returned from his trip. I had conveniently "blocked" the neuro IE spinal
​involvement and associated fears from my mind at some point during treatment and was in an unimaginable state
​of terror for the next several days. All I could imagine was that if I somehow didn't die on the table, I would be a
paraplegic for the rest of my soon to be miserable life!! Nightmares woke me every few hours, A/K/A any time I
managed to doze off for more than a minute.  
 
​One day my dear hubby was deep in thought and looking Very Sad ~ more sad than had become usual since this started. 
He didn't think I caught it when he wiped a tear​ away. When I finally got him to admit that he was upset and "demanded"
to know what it was about, he told me that he was very worried about the new surgeon. I admitted that I was too and asked
him to explain further. He said that he was terrified that the surgeon would examine me and the new CT scan that he was
having done just before our "get to know ya" appointment, and decide that I was not a good candidate for him to operate on.
WOW!! My mind did the fastest 180 in the history of surgery!! Now I not only Wanted the surgery, I was also terrified that I would
be turned down for it!! My head was spinning! So to speak 0_o
 
​Thank God he took me on! It wound up being what was basically a "two for the price of one" surgery. The ortho/neuro
​doc came in first and removed approximately half of three of my cervical vertebrae in order to free the remains of the
parts of the tumor that had woven its way in between the bones but had not yet actually touched the spinal cord. Once
he placed a rod in my neck to keep the vertebrae in place, he tagged in my oncologist surgeon and left. This guy removed
the top lobe of my right lung along with 2.5 ribs that the tumor was up against. It seems that anything the tumor touches
must go or it could have that one tiny little cancer cell on it that will grow into it making new roots and all sorts of bad
things could happen. It turned out that I had to have another surgery a year later to replace that little rod with 2 big rods,
one on each side of the spine. I joke that the kyphosis was due to my fat head being too heavy, but basically my head
started to tilt at a very bad angle and I needed stronger rods. That second surgery added about 2 inches to my scar.  
The original scar started on my upper back right down the center, starting at the point that would sort of be even with
​an imaginary line if you drew a line from where the neck meets shoulder on one side and went straight across to the
​other side. It goes down to a couple of inches before the bottom of my shoulder blades and begins to angle off to
​the right so that it goes under the shoulder blade and around the side to just below the outer side of my right breast.
​The second surgery added a half inch at the top and extended the straight part of the first scar down a little more
​than an inch. I don't remember the total number of inches that the first scar was, but the visiting nurse that they sent
​to my house to make sure the wound was healing well, measured it with a paper tape measure on her first visit. I know
​that it was over 20 inches ~ 26? 28? whatever, it doesn't matter.
 
I am not telling you all of this, and bringing too much of it back to the surface for myself, to scare you!! It is to prove 
a point. As terrified as I was of each of the parts of that first surgery, there was NO CHANCE in a scary, fiery place,
that I would wait a minute longer than I had to in order to get that Blankety-blank-BLANK tumor out of me while the
doctors said that they could and would do it as safely as possible!!!!
 
This coming March will be FIVE years since my diagnosis and August 15th 2016 will (God willing!!) be 5 years that
​I will be CANCER FREE!!! After each scan ~~ I still go twice per year ~~ I announce to anyone who is a "friend" on
​Facebook that I am still N.E.D. a/k/a No Evidence of Disease. As soon as the oncologist tells me that the scan
​"looks good" I breathe the deepest sigh of relief in my life! Yes, each scan is a bigger sigh. Each scan that comes
​up NED gives me a feeling of not just relief, but of joy and hope that I will now survive until the next scan with NO
​cancer in my body!!
 
I  told you all of this because I believe that if the doctor feels that you are lucky enough that he/she can remove
​those hideous cells growing one atop the next, and that it sounds like you feel she/he is telling you the truth, and you
trust him/her to do this well, that you should HAVE  IT DONE. And done sooner rather than later. As I found out,
sometimes the window in which the surgery can be successfully done is small, and postponing can be dangerous,
sometimes even deadly.
 
I will tell you that I did have pain, I did have two chest tubes that stayed in for a couple of days, and I did have the
wonderful pump that will give you as much pain meds as you want as long as you don't exceed the limits programmed
​into the computer on the pump. Because my surgeries took nearly 18 hours, you could say that I wasn't up and
​walking until the day after surgery, but it felt like the same day to me!! LOL! I was in there for a week and I hated
it! But I would do all of it again!! I hope that I didn't cross any lines or go "too far" in spilling my story in so much
"gross detail" for you or anyone reading. I have just seen so many great people stolen from us far too soon by this
​horrible cancer!! Too often it is found too late and there is nothing left to do but to "make them comfortable" and I
just can't stand that so many people are robbed of some beautiful things in life by cancer that might not have done
so much damage if only if only it had been found sooner!! 
 
Sorry about all of the "run on sentences" too!! When I get going..... OY!!  And yes, I do laugh, at myself and pretty
​much anything worth a giggle, because I STILL CAN!! I hope you get the same feelings some day soon!
 
All the best!
Mary
 
 
 
 
 
If  you have lungs, you can get lung cancer. If a cough doesn't go away, or shoulder/back pain can't be linked to an injury, DEMAND a chest x ray or CT scan to rule out cancer. EVEN if you never smoked.
Dance like nobody's watching - Love like you'll never get hurt

“Dan is actually a wonderful example of what you can achieve with what’s called personalized medicine,” Dr. Camidge said.
Portraits of the most blissful year of Dan Powell’s life rest on the mantel and hang on the walls of his living room.
On top of the world at 35, Powell married the girl of his dreams, became a father and bought the white Colonial with refinished hardwoods on a quiet street near the base of Paris Mountain.
He loved his job — or really, jobs — as Greenville County air-quality director and city planner for Fountain Inn. He wrote grants that brought in millions of dollars to revitalize Fountain Inn, build safe trails and start clean-air programs.
Words scripted on another living room wall — “With God all things are possible.” — give a glimpse into the year that followed.
Powell — a health-conscious, fit, nonsmoker — was diagnosed with Stage 4 lung cancer on Jan. 23.
He was told he had nine to 12 months to live. Then doctors discovered a new drug that could save, or at least prolong, his life.
But it was costly, $9,600 a month. By then Powell was on a fixed income, and insurance wouldn’t cover everything.
So when he needed help most, the man who made a career writing grants for others scrawled one more grant request on a sheet of notebook paper. This time, he hoped a grant would save his own life.
And in efficiency never seen in government grants, he was approved the next day.
The journey begins
It started with shortness of breath on an early December afternoon, as Powell walked along a path that Fountain Inn planned to turn into a walking trail.
He’d worked for years to bring money to the close-knit community to expand its trails and improve its downtown so more visitors would discover the city he helped revitalize.
Breathing difficulties were nothing new to Powell. He had wrestled with childhood asthma, and he knew how to manage the disease.
In fact, his asthma led him to an interest in air quality. As director of Keep Greenville County Beautiful, city planner for Fountain Inn and director of special projects for Greenville County’s planning department, he sought to keep Greenville’s air clean to help others breathe easier.
He helped bring the Breathe Better Air at School anti-idling program to Greenville County Schools. He wrote a grant to build sidewalks and trails through Safe Routes to School, and another to establish the southern tip of the Greenville Health System Swamp Rabbit Trail through Fountain Inn.
Powell lives to help others. He does it constantly, reflexively, sometimes overextending himself in the process.
He thought his breathing problems might be stress-related due to long hours and big changes. It had been a monumental eight months since he married Rebecca, moved into their new home and began the process to adopt her 6-year-old son, Davis.
He had passed his annual physical with flying colors in November, but his breathing problems persisted, and he came down with back-to-back colds, developed minor heartburn, a slight stubborn cough and began to tire quickly. He thought he might have pneumonia.
The idea of pneumonia alarmed him since his grandfather had died from it. So he made another appointment.
This time the doctor ordered a chest X-ray, which did show an infection. He went to a pulmonologist who took a bronchial scope on Martin Luther King Jr. Day.
The results came back that Thursday in January.
“It seems like forever, and we’re waiting on the doctor to show up,” he said. “He walks in the room. He sits down on the stool and he puts his hand on my knee, his head’s down, and he says, ‘You’ve got Stage 4 lung cancer.’ ”
Powell turned pale, needed air, just needed space. He stepped into the hall, dizzy, he nearly collapsed, sat down. Nurses brought water.
Then, he gathered himself.
“I got back up and walked into the office and said, ‘I want to go to the hospital.’ ”
No, not next week, he told his doctor. “I said, ‘Now.’ ”
Hours later, he met his oncologist and lay in a hospital bed, surrounded by family and friends.
Images showed cancer pockets that “looked like a Christmas tree,” Powell said. Cells had spread to both lungs, his blood, lymph nodes and bones.
Doctors said they could treat it, but there was no cure. His cancer was too widespread for surgery.
On the same day he was diagnosed, Powell started chemotherapy.
A moment of change
It’s natural to question while you toss and turn in a hospital room as buzzers beep and nurses check in, and that night, Powell couldn’t sleep.
His mind raced. He knew lung cancer had been tied to air pollution, and now he believed his cancer could be a result. After all, he’d grown up near a coal plant and already had asthma.
Last October, the World Health Organization declared air pollution to be a carcinogen and its link to lung cancer and possibly bladder cancer was unmistakable.
Powell, the air quality champion, couldn’t believe he now had lung cancer.
His turmoil reached an apex that morning, and he still chokes up when he recalls the moment his outlook changed.
A custodian came into the room, and while cleaning up, she asked if he was all right. No, he said.
He explained his cancer, and she told him he was young and not to believe the odds.
“I’ve seen people walk out of here with Stage 4 lung cancer and have amazing results,” she told him.
“She literally got down on her hands and knees … and she held my hands and said, ‘It’s going to be all right,’ ” Powell said. “She prayed with me and said, you’re going to be healed. God wants to keep you around.”
Her words sunk in.
Then the planner, the analyzer, took over. Powell asked for a second opinion and another oncologist to give him better news.
Enter Dr. Fahd Quddus, who wouldn’t give him a life-expectancy timeline, but gave hope that his cancer might be linked to a specific mutation in his genes that the medical world had just discovered in 2007.
The test results would take a month. Chemo continued.
Finding his way
Bound to a cane, a walker or a wheelchair, his brown hair gone from chemo and his already thin frame 25 pounds lighter, Powell waited.
The news came as snow enveloped Greenville on a mid-February afternoon.
Powell had ALK-positive (anaplastic lymphoma kinase) non-small-cell lung cancer, which is found in only 4 percent of lung cancer patients, said Dr. Ross Camidge, an oncologist at the University of Colorado Cancer Center and a leading researcher in lung cancer treatments for patients with specific gene mutations.
When the ALK gene mutation was discovered in 2007, a drug already in clinical trial was discovered to be an ALK inhibitor, Camidge said.
Camidge is one of the group of researchers who discovered the drug, called Xalkori, which blocks cancer cells from spreading and can lead to remission.
Before Xalkori, lung cancer patients faced the same basic cancer treatments, he said. But now patients can be screened for the ALK gene and then treated individually, he said.
Camidge called it a perfect storm of individualized care, giving specific treatments to groups of people who were likely to benefit from it the most.
There’s a debate brewing about whether the cost to research, test and bring drugs like these to market is worth the price, since the drug only works on specialized types of cancer found in just 4 percent of lung cancer patients.
To those with cancer, it’s not much of a debate. Powell needed to find a way to pay the $115,000 cost per year to buy it. Though he had insurance, it wouldn’t cover everything.
Too weak to sit at a computer to fill out the request for assistance, Powell hand-wrote his request to the national nonprofit Good Days from Chronic Disease Fund, which provides assistance with ongoing medical costs to patients in need.
He found out the next day he was approved.
A beautiful image
With belt cinched tight and short-sleeved dress shirt hanging loose from his frame, Powell sunk into an oversized armchair that enveloped him in his fan-cooled living room.
He shook the rectangular white Xalkori container filled with 250 milligram miracles.
“This medicine right here is what’s saving my life,” Powell said.
Quddus told Powell the medicine could contain the cancer, at least for a time, but it’s not billed as a cure.
Powell wanted a cure. Another opinion. He called Pfizer, which makes the drug. He traveled to Yale Medical Center to speak with another leading lung cancer researcher. He connected with a mentor and four-year lung cancer survivor at a support group called Lungevity. You’re on track, they all said. Trust the medicine. Let it work.
Two weeks later, he had another CT scan. Quddus called him back to his office to look at the images. Two nurses sat in the room, both in tears.
“I was like, what’s going on? And they were just wiping tears away, and he was in big smiles and he said, ‘Look at this.’ ”
“When you looked at the two scans of my lungs, there was like a two-thirds reduction in tumors, from going all over the place to almost gone.”
His cancer was in remission. He left the office and drove straight to a car dealership to buy a Nissan Leaf fully electric car.
Sharing his story
Now two months have passed. Powell celebrated his 36th birthday with a cake in the hospital, and celebrated again when scans showed the cancer gone from all but his lungs, and the cells in his lungs are tiny.
He talks about watching his son graduate from college. He hopes to qualify for a new drug, Zykadia, which was approved two weeks ago and is stronger than his current drug.
“Dan is actually a wonderful example of what you can achieve with what’s called personalized medicine,” Camidge said. “If you know what’s driving somebody’s cancer, and you give a drug targeted to that abnormality that’s driving their cancer, then the kind of response that Dan’s got is actually typical.”
The cancer could return, Camidge said.
“You create an environment that is effectively suppressing the cancer very successfully, but like any environment, the cancer will adapt to it,” Camidge said. “At some point in the future, parts of his cancer will figure a way around it and start to grow.”
As inhibitor drugs prolong lives, researchers scramble to build the next generation of drugs and race to find a cure, Camidge said.
Powell wants to share his story. He’s recorded YouTube videos, he spoke at a Moonlight 5K race and traveled to Washington, D.C., to a Lungevity national conference.
In June, Good Days from CDF will come to record his story to share with other patients seeking help with medication payments, said Peggy Foley, Good Days’ senior director of marketing.
“The connection between the possibility of the environment, we don’t know, playing a role in him getting this disease, and the fact that he’s been so vocal in wanting to address it … we just think it was a really good story to increase awareness,” Foley said.
Powell has thrown himself into new endeavors. He’s trying to expand the number of electric vehicle charging stations in Greenville. He’s raising awareness for lung cancer research.
He will serve as grand marshal for the Relay for Life on Friday at J.L. Mann High School.
For Powell, it’s a matter of life or death.
“This buys me time,” he said, picking up the miracle pillbox again. “Some people go a year. Some people go six years, but I need to know what’s next after this.”
Contact reporter Nathaniel Cary at 864-298-4272 or follow @nathanielcary on Twitter.
http://www.greenvilleonline.com/story/n ... r/9375813/