Mom just diagnosed with Stage IV non-small cell lung cancer. Questions.

J3ss

Hi, my mom is 49 years old and had never smoked in her life, but she has just been diagnosed with stage IV non-small cell lung cancer and has a tumor (2.5 x 3 cm) in her left lung as well as malignant fluid in her pleural cavity in the same lung. The surgeon said surgery is not an option because of the fluid. They already biopsied and drained the fluid and put talc powder in it to stop the spread. The prognosis is grim, the doctor said up to 2 years with chemo.

I was just wondering if anyone on here had taken to a specific diet with stage IV lung cancer and how it is working? I am very into nutrition so I am already researching a bunch but there is a ton of information out there to weed through and I'd like to start ASAP. Does anyone have a really good book recommendation?

Also, my dad has been talking about trying an alternative treatment if they tell her chemo wont work, so does anyone have any experiences with those? Especially the ozone/oxygen treatment? Any advice on the alternative treatments that are scams or best hospitals in the US/outside of the US that are knowledgeable in integrating traditional and alternative treatments?

I am just heartbroken this is happening and feel I need to help my mom out in anyway I can. Thank you.

smneider

Your Mom
So sorry to hear about your Mom. My heart goes out to you. Your Mom is so young. My mom (68) was diagnosed with Stage IV in mid July this year. Never smoked and has always eaten right/exercised. Just makes no sense. I have found this website and others like it to be helpful in answering questions and just learning. My Mom is going to MD Anderson in Houston. It is supposed to be one of the best in the world. They are into traditional meds and my Mom wants to follow the doctor's instruction. I did take out ll fragrances in her home-candles, potpourri, soap, lotion, laundry detergent, etc. and she has all items with no fragrances added. I have been reading a lot about benefits of Vitamin D. Just search Vit D here or on google, etc. I have found inspire.com a good site to talk to others and read (http://www.inspire.com/groups/lung-cancer-survivors/topics/non-small-cell-lung-cancer-stage-iv/).

Keep the faith

NayPaul

good advice
Forget the alternative treatments. Send me the money and u will be ahead.

Your mom is young, female and a nonsmoker...... immediately get a second opinion AND... get her tested for the efgr and alk mutations. If u get no other things from me, please get a second opinion and get her tested for mutations. Trust me when I say ther is real.... not ficticous hope here. Look up my posts and you will see... your mom has alternatives..... without the bunk of alternative meds.

grannylove

J3ss
So sorry to hear of your mother's dx. I know it is a difficult thing to process but I am so glad that she has a strong and caring advocate. There are alot of people that have snake oil but don't fall prey to them. Find a good cancer center with a reputable surgeon/oncologist that is caring and knowledgeable in lung cancers. Your mother needs to have an oncologist that will listen to her and answer any questions about treatment options. As the others have posted, getting her tested for mutations is a good idea. There is also a book I can recommend, although it is not alternative therapy, just a good book written by a Dr. who became a cancer patient and how he now sees the treatment differently. The book is called....Anti-Cancer, A new way of Life. I cannot remember all of the writers' name...David ????????. Sorry I cannot remember, I gave my book to a friend who is battling this disease also. Just type in the title and it will come up. It deals with alot of nutrition that have had studies done and is cited in the book. I do believe in conventional treatment and this book should not be used to replace a good treatment plan. That being said, I send my prayers to you and your mother. This is a good board to seek many types of support, so post whenever you feel the need. There are many people with stage IV on this board and have been here for years, that are still encouraging others to fight this dreaded disease. So stay strong! Cheryl

J3ss

smneider said:

Your Mom
So sorry to hear about your Mom. My heart goes out to you. Your Mom is so young. My mom (68) was diagnosed with Stage IV in mid July this year. Never smoked and has always eaten right/exercised. Just makes no sense. I have found this website and others like it to be helpful in answering questions and just learning. My Mom is going to MD Anderson in Houston. It is supposed to be one of the best in the world. They are into traditional meds and my Mom wants to follow the doctor's instruction. I did take out ll fragrances in her home-candles, potpourri, soap, lotion, laundry detergent, etc. and she has all items with no fragrances added. I have been reading a lot about benefits of Vitamin D. Just search Vit D here or on google, etc. I have found inspire.com a good site to talk to others and read (http://www.inspire.com/groups/lung-cancer-survivors/topics/non-small-cell-lung-cancer-stage-iv/).

Keep the faith

Smneider
Thank you smneider for your advice! How is your mom doing? My mom is currently going to Mass General who I guess work with the doctors at Sloan-Kettering so we will see how that goes. She starts chemo in two weeks and they are also testing her for mutations right now. I will definitely check out all of the stuff you have listed. Wishing you and your mom all the best.

J3ss

NayPaul said:

good advice
Forget the alternative treatments. Send me the money and u will be ahead.

Your mom is young, female and a nonsmoker...... immediately get a second opinion AND... get her tested for the efgr and alk mutations. If u get no other things from me, please get a second opinion and get her tested for mutations. Trust me when I say ther is real.... not ficticous hope here. Look up my posts and you will see... your mom has alternatives..... without the bunk of alternative meds.

NayPaul
Hi NayPaul, thank you for your response! I am trying so hard to stay positive and just try to learn the most I can about the disease and treatments but it is overwhelming! What do you mean by get a second opinion? Of the treatment plan? She got the biopsy done at Mass General, and my dad wanted to either meet with doctors at Dana Farber or Sloan Kettering, but my mom ended up wanting to meet at Mass General as they say they are in contact with Sloan Kettering doctors anyway.

The plan now is after she recovers from her biopsy they will start chemo, while waiting for her mutation test results to come in (they said it will take 4 weeks). They are also testing her for brain cancer because if it has spread they cannot put her on Avastin as they would like to do, and they also want to put her on Tarceva I believe if it does turn out to be a mutation. Thank you for giving me hope though, I will be checking out your posts.

J3ss

grannylove said:

J3ss
So sorry to hear of your mother's dx. I know it is a difficult thing to process but I am so glad that she has a strong and caring advocate. There are alot of people that have snake oil but don't fall prey to them. Find a good cancer center with a reputable surgeon/oncologist that is caring and knowledgeable in lung cancers. Your mother needs to have an oncologist that will listen to her and answer any questions about treatment options. As the others have posted, getting her tested for mutations is a good idea. There is also a book I can recommend, although it is not alternative therapy, just a good book written by a Dr. who became a cancer patient and how he now sees the treatment differently. The book is called....Anti-Cancer, A new way of Life. I cannot remember all of the writers' name...David ????????. Sorry I cannot remember, I gave my book to a friend who is battling this disease also. Just type in the title and it will come up. It deals with alot of nutrition that have had studies done and is cited in the book. I do believe in conventional treatment and this book should not be used to replace a good treatment plan. That being said, I send my prayers to you and your mother. This is a good board to seek many types of support, so post whenever you feel the need. There are many people with stage IV on this board and have been here for years, that are still encouraging others to fight this dreaded disease. So stay strong! Cheryl

grannylove
Thank you so much for your post, I really appreciate it! It is nice to know there are other people out there with advice and support, because as much as I research this disease it is still hard to accept right now. We are sticking with Mass General (the hospital that performed her biopsy) as a treatment center for now, although I kind of wish my mom would at least meet with a second oncologist to get his/her opinion on treatment. Not that I do not like this oncologist as she seems very knowledgeable and up to date on new treatments, but just for piece of mind that this is the right plan. They have already tested her for the mutations and we are awaiting the results, but starting chemo in the meantime in a couple of weeks. It is funny you should mention that book because I was going crazy looking up book reviews and trying to figure out which ones are best to get, but I did end up saving that one as a possibility! I realize conventional treatment works and was not trying to sway towards alternative treatments, but was just curious of what people on this board have had experiences with. I am now focusing my research on trying to keep her, and the rest of my family's immune system up as we all need to keep our strength up. I am big into nutrition so hopefully I can be a help in keeping my mom the healthiest she can be during this time. I hope you are doing well, and I admire your strength.

NayPaul

J3ss said:

NayPaul
Hi NayPaul, thank you for your response! I am trying so hard to stay positive and just try to learn the most I can about the disease and treatments but it is overwhelming! What do you mean by get a second opinion? Of the treatment plan? She got the biopsy done at Mass General, and my dad wanted to either meet with doctors at Dana Farber or Sloan Kettering, but my mom ended up wanting to meet at Mass General as they say they are in contact with Sloan Kettering doctors anyway.

The plan now is after she recovers from her biopsy they will start chemo, while waiting for her mutation test results to come in (they said it will take 4 weeks). They are also testing her for brain cancer because if it has spread they cannot put her on Avastin as they would like to do, and they also want to put her on Tarceva I believe if it does turn out to be a mutation. Thank you for giving me hope though, I will be checking out your posts.

2nd opinion and other mutations
Yes... for the most part, I mean the treatment plan, although a second oncologist may give you some other thoughts and other tests that shhould possibly be considered. In our case, te first doc was adamant we get a second opinion. Wen we did, the second doc had about three other tests that I'm glad we considered and their institution had a trial tat was perfect for her, that the second did not.

My understanding is that tarceva is great for efgr mutations, but there is also an alk mutation (much less common) that should also be tested. Many docs also test for kras. While my understanding is there is no target meds for kras, these three mutation are mutually exclusive, so if she has one, it is reasonably safe to assume she does not have another.

As u say, this is overwhelming and sometimes difficult to stay positive. But if we don't, then in essence we start to rob ourselves of today's happiness.

Happy22

Mom
My heart goes to you. My husband has been fighting a great battle on Lung Cancer sage 4 in the bnes now - 10 radiations 4 chemos. since March 2011.
I question daily what I can do to make his life better.
I love him and show it with hugs and kisses often - he says touch is so important to feeling better.
He wants me to just sit and listen without judgment or comment so he can vent.
He has to know I will love him the same even with his body failing every day. I do.
I try to remember the body is not the real person. I try not to take anything he says too personally. He is mad at the world some days. I let him cry when he needs too.

Yes Boost drinks (any Wal-Mart) have stopped his weight loss alot - 3 daily @ chicken soup with added broth daily. Anything she can get down - gatoraid and 1 Flintstone vitamin daily have helped his blood work stay nearer normal. I like the cook book called "Eating Well Through Cancer" by Holly Clegg & Gerald Miletello, MD and "What to Eat During Cancer Treatment through American Cancer Society.
The book I like is "there's No Place like Hope" by Vickie Giard (Amazon had it but so did the library)

What a loving daughter you are - God's blessing on you. I trust Him daily for strength.