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Dear All,

My name is Susan. I got diagnosed with stage 4 lung cancer that met to the spine over the memorial weekend. Never smoke, never drink, and only 41 years old. We cried out loud,cried with no tears, feeling like the life stops for me, no more will to live. But then I found this forum where I can find myself not alone. Please keep me in your prayers. Thanks everyone.

 

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Hi Susan

I'm very sorry to hear about your diagnosis. A cancer diagnosis is a punch in the gut for everyone involved. So many unanswered questions and so many unknowns.  You are in good company here.  There are many late stage lung cancer survivors who will be introducing themselves soon.  The diagnosis, staging, and other various testing always seem to take forever. That was the worst part in dealing with my mom's diagnosis - the waiting.  I am glad you found this site. The Lungevity site has a lot of helpful, easy-to-read info that most of us here have benefited from.  We are here to help you navigate through this challenging time in your life.  

Take Care,

Steff

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Hi Susan,

welcome here. I too am sorry to hear about your diagnosis.As Steff said, you'll probabably hear from other Stage 4 survivors soon. While I'm unfortunate in having lung cancer, I'm fortunate in having it discovered early, in a scan for something else. Please let us know what questions you have and how we can support you. There is hope, and I think you can find some of it here. There are a lot of new treatments for lung cancer and people are surviving with it and living good lives.

Hang in there,

Bridget O

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Hi, Susan, and welcome.

I'm sorry, too, about your diagnosis.  Lung cancer sucks no matter what your age or your smoking history.  Like Bridget, my cancer was caught very early because I was in a screening program for longtime smokers.  I'd given up smoking a year before my diagnosis.

There are, indeed, quite a few long-term survivors here whose cancer was Stage IV.  They will be along shortly.  

Has your tumor been biopsied so you know what type of cancer it is?  Do you know if it's been tested for genetic markers that might make you eligible for targeted therapy?  

Glad you found us--this is a great group of folks and you will find a lot of collective knowledge and support here.

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Thanks Lexiecat,

It is NSCLC_ positive for EGFR.

I just had back surgery to stabilize the spine because it almost collapsed.so this takes several weeks for healing before they can radiation to shrink the tumor left there.

They working on the preauthorise with the insurance for Tagrisso,I guess. I think it goes a bit slow for me, so today I did follow up with them and it really turned out the oncologist office did not work on preauthorisation at all. So I do not know if I need to hear second opinion at UCSd here in San Diego.

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Wow, that's frustrating.  I don't know a lot about the targeted therapies, but plenty of other people here do, and I'm sure they will have an idea about how to get things moving in the right direction.  

How are you feeling after your back surgery?  

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It feels bad when you have to reply on somebody to care for you. When offbed I need help to put the braces on to keep me from twisting, bending etc... I am working on recovery by waking around the house, upstairs. I try to use pain pills at night time only to stay away from the unwanted too much side effects. 

Oh does anybody know of what kind of diet we should have? I am so scared to eat and feed them at the same time? In YouTube they suggest all kind of drastice diet change like vegan, ketogenic, bla bla. Any thoughts on this?

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I think you want to eat healthy food in general, but I've never seen/heard anything credible to suggest a particular diet is beneficial.  Sometimes the treatments make eating difficult--there is sometimes nausea or difficulty swallowing or changes in the ability to taste food.  When that happens, it's important to try to get sufficient calories to keep up your weight and strength.  Tom Galli, who will be along shortly, can tell you all about the wonders of mint ice cream when things got tough for him.  :)  But apart from that, I've never heard that drastic diets do any good.

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Welcome to the forum although I'm sorry you had to join. I am also newly diagnosed stage IV adenocarcinoma. I am on no special diet but I have been told I can not eat beef unless it is well cooked..no pink...no food from buffets, no fresh vegetables unless we clean, prepare them ourselves. No fruit already peeled, cut up at a store or restaurant. It seems they are concerned about bacteria with an immune compromised system more than anything else. Hugs and prayers!

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Susan,

Welcome here.  I am so sorry I am late responding to your welcome post.  I've had a trying week.  But then, so have you.

You are a 41 year old, never smoker, diagnosed with stage IV, unspecified type, lung cancer with mets to your spine.  Memorial Day weekend was no fun.  So, here is the bottom line up front. You are wondering what are your changes of surviving this mayhem.  I'd say about as good as mine.  I had a horrible journey from diagnoses through no evidence of disease (NED) #1, to NED #2, to NED #3 to NED #4.  Four recurrences from my diagnosis date of February 4, 2003 through my current NED date of March 7, 2007.  If I can live, so can you.  Oh by the way, since you are alive after diagnosis, you are officially a lung cancer survivor!  Welcome to our club!

When things in your life settle down a bit, we'll need to know more information about your lung cancer to help you understand and cope with what is ahead treatment wise.  Lung cancer comes in different in two basic types: small cell, and non small cell.  Non small cell has three major sub types: adenocarcinoma, squamous cell, and large cell.  You can and should read about lung cancer types here.  If you've had your biopsy, the pathology report will identify your type.  Let us know if you are comfortable revealing the information.

If you are stage 4, then surgery is generally not an option.  Fifteen years ago, your situation would have been bleak.  Now however, believe it or not, your treatment and outcome expectations have real success opportunities.  There are so many new treatments from precision radiation to immunotherapy to targeted therapy. (I've hyperlinked each new treatment so you can read about it.) Then we have new clinical trials that are showing very promising results. Once we know your type of cancer, we can suggest trials but to wet your appetite, read this about exciting new trials underway at the National Cancer Institute as but one example. So, there is more than hope for you; there is a meaningful probability of extended life.  How long?  I'm still counting.

You are not alone.  We've been down the path you are on.  We will help you navigate treatment and share our tips and tricks.  

Read into our disease.  Knowledge provides the power to ask the "terribly preceptive questions" of your treatment team.  We are part of your knowledge base.  Ask us questions.  I dare say we have a full spectrum of survivors on board who stand ready to lend their support.

Please try and not consult Dr. Google about survival statistics.  They don't mean much these days because they are based on outdated information and do not reflect the survival impacts of new treatments.  Moreover, they are very weekly constructed statistical data with uncontrolled inputs and unknown outputs. By that I mean that only age, type, stage, date of diagnosis, race and gender are inputs to the national data base for everyone diagnosed.  But no medical history is included so someone could have say heart problems and that symptom would not be included in the data.  Moreover, there is very little information on the cause of death, when death occurs.  A survivor could be hit by a bus and it still counts as a statistical death by lung cancer.  So for a lot of reasons, steer well clear of Dr. Google and his take on survival statistics. If you are interested in understanding the shortfalls of medical statistics, listen to this essay by Dr. Stephen J. Gould.

I know this is a lot to take in but take your time, read in, and ask your questions.

Stay the course.

Tom

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Hi Tom,

Thanks so much for your reply. I finally got you:). The hero.

Yep it is really scary to read thoes numbers. I am still scared to find out any information on my condition thinking I might bump into something I do not want to hear/to know. Even do not dare to ask the oncologist anything.

All I know that I have adenocarcinoma, positive for EGFR mutation, which I do not need chemotherapy. I just need the pill.

Tom, do you follow a special diet? Can we still eat sugar and carbohydrates? They say cancer cells loves sugar. We feed them if we eat sugar. So I am really scared to eat to the point that I passed out at the hospital.

Again thank you so much for your time and inputs.

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Susan,

At this time I am not aware of any targeted therapy. Still new at all these terms and what is used for the different types of cancer. I have had 2ncycles of chemo -- carboplatin and taxol. I start 10 days radiation in my lower spine tomorrow and 1 day on my brain mets. Then we'll see. As someone else posted a healthy diet is more important. Even after only a month, I find that my appetite is not what it used to be. I went from everyone telling me I was obese to telling me i'm not allowed to lose any more weight. I believe you'll find just as many articles noting that sugar "feeds" cancer is a myth. Lots of our cells need sugar. As Tom says, I wouldn't put much stock in Doctor Google. So, don't be afraid to eat. You won't actually be doing our body any good by that. Get a notebook and write down your questions for your doctor. We also wrote questions about nutrition and diets and restrictions. As I mentioned, most of my doctors were more concerned about bacteria causing problems than whether I ate a popsicle or bread for dinner.

Good luck on your journey. There's lots of info thrown at you so fast it can seem overwhelming. Just take it one day at a time.

Hugs and prayers!

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Hi Susan,

Here are some thoughts about diet. The restrictions that Murphette describes are typical for people who are at risk for neutropenia from chemo. Neutrophils are a type of white blood cells that fight infections. Many chemo drugs cause neutrophil levels to go really low, which is called neutropenia. This  puts a patient at a big risk of infection. I don't know whether Tagrisso, which isn't chemo, has a risk of neutropenia. I recommend that you ask your doctor this, and if there is this risk, ask about diet and other precautions to reduce  the possiblity of infection.  Otherwise,  eat a healthy normal diet.  Drastic diet changes are probably not really helpful. It is important  to eat enough and to get enough protein, which is important for any kind of healing. Restricting your food intake won't  help with your healing from surgery or with cancer treatment.  

Hang in there,

Bridget O

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Hi Susan, 

Welcome, and I am so glad you found us.  Boy you have made a lot of friends here already.  glad they tested for EGRF.

Spine surgery is challenging to get over.  Keep working at it.   So you have pills and radiation to look forward to.  When I  had

treatment with chemo I had a lot of problems with nausea, and I lost weight.  They encouraged me to eat.  They would give me pudding, ice cream,

jello etc.  I made it  --------   but all those sweets really gave me a bad habit.  After treatment I continued eating !   I gained weight and finally began to watch 

what I ate and start an exercise program to get it off..  I still go to LA fitness here in Minnesota.  

Keep us posted. 

Donna G

 

 

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Personally, I don't believe in those things you read online about sugar "feeding" cancer.  We all need carbs in our diet.  While too much added sugar isn't especially healthy for anyone, I don't think it poses any particular danger to cancer patients.  And if, like Donna and Tom, the only foods that appeal to you or you can keep down are sweets, go for it--you can supplement with vitamins and minerals to make sure you are getting the right nutrients.  

Note that there are oncological nutritionists out there--if you are concerned about nutrition you can ask for a referral to one.  I'd be more comfortable following the advice of a properly credentialed nutritional expert than I would the wacko stuff you sometimes read online.

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Hi, Susan,

You are not alone! I am glad to see that you've already connected with several moderators and members on this site. This is a great place to find support, information, and hope! Please continue to post updates and ask questions.

I am happy to provide you with information about LUNGevity's support and education resources. If you have nutrition specific questions, I'd recommend reaching out to the experts at Savor Health, who have partnered with LUNGevity on our Experts Nutrition blog. Here is the link to submit a question: https://lungevity.org/savor-health-nutrition-blog-questions

With gratitude,

Lauren
--
Digital Community Manager
LUNGevity Foundation

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Susan,

No I don't follow a special diet now nor did I during treatment, with one exception.  I took a now called targeted therapy drug -- Tarceva --  in combination with Taxol and Carboplatin in my last infusion series (fourth line treatment). Tarceva destroyed my appetite, went to war against my intestines, and I stopped eating.  Luckily, I'm married to a woman who has a masters degree in dietetics.  She found strong mint flavoring and very tart tasting foods are often appealing for people with impaired appetites while in chemo.  So, she made me mint-Oreo cookie, chocolate mint ice cream.  She churned the ice cream and crushed the cookies in a plastic bag and added it to the batter as it solidified.  I lived on ice cream and, strangely cranberry juice for 6 weeks.  

Martha realized I needed calories to recover from the assault my body was taking from chemotherapy.  Now is not the time to start a diet.  My reading suggest that neither sugar nor carbohydrates feeds cancer cells.  A book called The Emperor of All Maladies goes to great length to describe how cancer cells grow and behave metabolically.  They grow rapidly because they are able to influence the body to build new blood vessels to supply them with nutrients and oxygen.  So sugar and carbohydrates don't feed cancer cells, additional blood supply does.  

Lauren's idea about consulting with Savor Health Nutrition is a good one.

Stay the course (and keep eating).

Tom

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Thank you Tom. Now can I ask you some questions please:

1_ so now I had surgery to stablise the spine. They might want to radiation the left over tumor there in the spine. Is it necessary to do it? Because they prescribe Tagrisso to take care the whole system right? So why we still need radiation?

2_I am with the team at Sharp right now. The radiation doctor said that it is her to perform the first treatment, the second time onwards the therapist will take care of me. She will be around. I do not like this idea at all. Is it normal practice everywhere? Do you suggest me to go some where else where I can get better care?

I live in San Diego, where we have UCSD comprehensive canter center and Scripps in coorperation with MD Anderson cancer center in Texas.

Thank you Tom.

 

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