Peachy

I found this letter on the Lung Cancer Survivors’ Community website: http://lungcancer.clinicahealth.com/topics.pl This well-composed letter was written by CKP, a 51 year old woman with NSCLC. We are trying to get everyone who has been afflicted by lung cancer, whether personally or as a caregiver, to write letters to as many talk show hosts as possible so as to start to bring attention and research funding to this horrible disease. Please take the time to write a letter. I’m sure that CKP wouldn’t mind if you paraphrased her letter or used parts of it in your own. The only suggestion I would make is to add the color of the lung cancer ribbon to the letter. This way the celebrities could have everyone in the audience wear one. (You might want to suggest this in the letter.) It has been difficult to find out the color ribbon associated with lung cancer. I have searched on the Internet and found that a Pearl Colored Ribbon stands for lung cancer and lung disease, Multiple Sclerosis, Mesothelioma. We should all include this in our letters. Dear (Oprah Winfrey, Ellen DeGeneres, Marie Osmond, Tyra Banks, Kelly Ripa, Barbara Walters, etc), You may be aware November is Lung Cancer Awareness Month. As the number one cancer killer, lung cancer causes more deaths yearly than breast, prostate, colon, liver, kidney cancers and melanoma combined. Lung cancer is the most under-funded of all cancers and that must change so lives can be saved. There is a veil of discrimination against people with lung cancer. The public perception is that only smokers, or people who deserve it, get lung cancer. That's inhumane and untrue. Please help put a human face on lung cancer today. Pink is not the only color ribbon. Don’t get me wrong. I am thrilled the Susan B. Komen Foundation has had the success it has had. It has undoubtedly saved many lives, including the life of one of my oldest and dearest friends. I do not begrudge them the money they have for research. Nancy Brinker is a brilliant businesswoman and had an idea and ran with it. It has turned into the largest cancer advocacy group in the world. The Susan B. Komen Foundation is fortunate in that over 80% of women diagnosed will survive. These women go on to become advocates for Breast Cancer research and funding. Lung Cancer has an 8% chance of 5 year survival. That doesn’t leave many people to advocate. The problem is this…..lung cancer is much like AIDS was in the 80’s. There was much blame associated with the disease, only gay people and drug addicts got AIDS, why should anyone care? They deserved it for their risky lifestyles. All they needed to do was stop being gay or drug addicts and they wouldn’t die from this disease. Yet, it was discovered later, there were plenty of people that got AIDS that weren’t gay or drug addicts, and they were dying nonetheless. There is a stigma attached to lung cancer as well. If people didn’t smoke they wouldn’t get lung cancer so why should anyone care? Yet, it isn’t just smoking that causes lung cancer. Asbestos, radon, pollution, genetics, they all contribute to this disease. Yet, no one cares because it is a “smokers” disease. No one asks the breast cancer patient “Do you drink too much?”, “Did you use antiperspirant with aluminum?” Did you use birth control?”. No one asks the colon cancer patient “Do you get enough fiber in your diet?”. No one asks the person with heart disease if they went to McDonald’s all the time or the diabetic how much they weigh. Yet, the first question to the person diagnosed with lung cancer is “Do you smoke?” As if that justifies their disease! I am asking you, one of the most influential people in the world, to please, please address this issue in November, National Lung Cancer Month. If someone of your caliber would get behind the movement, perhaps there would be more money put into research and, maybe, just maybe, you can help to erase the stigma attached to this horrid disease. There are people that haven’t smoked a day in their lives that get lung cancer. There are people that quilt smoking twenty and thirty years ago that get lung cancer. And, there are people that suffer from a horrible addiction that get lung cancer. The one thing they all have in common is they are all human beings, deserving of a chance to be cured and live. No one deserves to die from lung cancer.

Thank you all for the useful information you provided. Dr. West, when the radiation begins, I smell a putrid smell somewhat like chemicals burning. I did mention this to the radiation team and asked if I could hold my breath during the treatment. They responded that the treatment was quite long and that they didn't think I should hold my breath for that long a period of time. I then realized that the smell was prevalent only during the first 5 or 6 seconds of the treatment on each side of my brain. We agreed that they would signal me when treatment begins. I now hold my breath for the first several seconds and no long have to withstand the smell or the resulting nausea that I had endure for the rest of the day. Heather, thanks! Now I know that I'm not nuts. The radiation team did look at me queerly when I tried to explain the experience I was having! Peachy

Thanks, Bucky. I will look forward to feeling better. Peachy

Thank you so much, Tom. Your response was very informative. My doctor says I have no edema in my brain, so I will not need the steriods. I have had four treadments of wbr and I feel lightheaded and very nauseous. I still have six treatments to go. Did you smell an awful smell during the radiation? I smell an awful smell, like chemicals burning. This smell stays with me the entire day and adds to my nausea.

I began WBR on Tuesday 9/25. I have only have two treatments thus far, but I am feeling very nauseous and tired all the time. Does anyone have a remedy for the nausea. I sure would appreciate any suggestions. Peachy

I understand that Decadron is used to prevent brain swelling during whole brain radiation treatments. Can anyone provide information and side effects of the steroid Decadron?

Can anyone provide information and side effects of the steroid Decadron? Thanks.

Thank you all. This is such a wonderful community. I am inspired by you!

Can anyone provide information and side effects of the steroid Decadron?

Thank you for your responses. This really helps me to prepare for the radiation, and it will help my son to know what to expect. God bless you all! Peachy

Hi Nonni, Thank you so much for your response. God bless you. I am happy that you are doing so well. Peachy

HI Bucky, Thanks you so much for your reply. I'm happy that you didn't suffer many side effects from the WBR. I pray that you will continue to improve. Good luck and God bless you. Peachy

In July, I was told by a radiation oncologist that I will never again feel as good as I do now. It is suggested that I have whole brain radiation followed by six weeks of chemotherapy. Until now I have put off treatment to spend some quality time with those I love. I considered putting off any treatment until I begin to feel poorly. Right now I feel fine with a bit of heaviness in my chest and some lightheadedness and nausea in the mornings. I recently made a decision to have the whole brain radiation. I need some input into what I might expect from this treatment... how I will feel, discomforts, pain, mood swings, hair loss, other side effects, etc. and what my caregiver might expect from me. This is such a great forum for information because you have been through it, and are not just telling me what a doctor might speculate. Thanks for any help or advice. I will truly appreciate it.

Hi Karen, I will pray for your dad, Ron Smith. Peachy

Hi Heidi, Thank you so much for your prayers. I will pray that your mom continues to be cancer free. I'm happy that the X-Ray was a successful tool in your mom's diagnosis. Peachy

Thank you so much. You are all so supportive and I am learning so much from you. Yes, Tom, I can understand that one goal of treatment is to survive long enough until a cure or effective treatment for lung cancer is uncovered. However, since I have become aware that I am afflicted with this disease, and I have researched treatments and spoken to lung cancer oncologists at Sloan Kettering an other well-respected medical facilities, I have come to the conclusion that we, as lung cancer victims, have a stigma attached to us. Even though many who suffer from lung cancer have never smoked a cigarette, it appears that we are discriminated against because it is a widely accepted notion that lung cancer is brought on by smoking and that smoking was our choice. Therefore, we are solely and totally responsible for causing our disease. Although lung cancer is the single most deadly cancer in the United States, research for this disease doesn't compare to that for breast cancer and/or prostrate cancer. The majority of funding goes to research for those cancers. Is this because those are curable cancers, or is it because those are now curable because of the funding available for research and development for those types of cancers??? Yes, I guess I have become cynical, but imagine my surprise when time after time, doctor after doctor, I received that look... that attitude... "We do what we can do, and we can possibly prolong your life, but there is no cure for your disease." Even at one of the world's leading cancer research facilities, I felt that my "data" was more important than me, or any effort to help me survive this disease. In fact I had to wait two weeks after my initial consultation for a final evaluation. It seems that they had to scan all my film (CTs, MRIs, etc.) into their system (even though they examined these films and had reports). They also had to have all pathology slides from other hospitals (no reports, but the actual slides). Also, when they finished reviewing all the materials and had possession of everything, they had nothing new to divulge and no new recommendations. They also would not return the pathology slides to the rightful hospital without much difficulty on my part. Three years after I quit smoking, in December of 2005, I requested a chest x-ray from my doctor. He wouldn’t write a prescription for a “routine” x-ray, so I said that I was having back pain. He said that the insurance probably would not pay unless there was a reason for the x-ray. A year later I read an article that stated chest x-ray were useless in detecting lung cancer at any curable stage, so I went back to the doctor and said I coughed up some tiny drops of blood and wanted a Chest CT. He wrote a prescription for one without contrast. I mention this because when a tumor was detected by the CT, I had to go back for another CT with contrast. Shouldn’t this doctor have known that a chest x-ray was a useless tool for cancer detection? He knew that I had been a heavy smoker. Shouldn’t he have known to prescribe a CT with contrast.? I feel that if this doctor had done the right thing, I probably would have been diagnosed in December of 2005 at an earlier and more treatable stage of lung cancer. I think you are all "right on" when you advise that we must take an active part in our treatment. We must do the research, talk to others (this is a wonderful forum), and become proactive. We must make wise decisions about our treatment and about those who treat us.

Dear Tom, May the Lord embrace you daughter and provide you and your wife with the strength and the courage to endure this very difficult time in your lives. Your family will be in my prayers. Peach7

Hi Nick, Thank you for sharing you mom's situation with me. It is so nice that she had you and your wife to share her last months and have some good times. I only hope that I will have the energy to make eggplant parmigiano for my sons during my last weeks on earth. I know that you made her final days loving for her. I hope that my sons can provide the same love and support. I still have not decided about treatment, but I think your mom was right to choose the mind first, and the body second. I have had some lightheadedness and dizziness recently and am considering the whole brain radiation before anything more serious happens to my thought processes or coordination. I will consider chemotherapy later when I am not feeling as good as I am now. I am glad that you had some quality time with your mom before she passed. God bless you.

Hi Kate, Wow, you and your mom went through a lot. It is wonderful that she had you to love her and see her through to the end. I cried when I read her medical timeline. It was unfortunate that she discovered her condition so late and didn't have the time or the energy to enjoy the last of her life and prepare for what was to come. I am fortunate that I became aware of my illness before I had any symptoms. This gave me the chance to arrange for my family's future and enjoy life with them before I become sick. Thank you so much for sharing you mom's story with me. God bless you.

Sharon, Thank you so much for that information. I am so happy that you were able to enjoy those three satisfying years with your dad. I am so encouraged by your posing. Peachy

Dear Jackie, Thank you so much for the information you provided. I am so very sorry about your husband's passing. It is wonderful for you to remain an active part of these message boards. I truly appreciate your input Peachy

Thanks, Ned. (I do love your nickname!) I am in very good health other than the lung cancer. I have had no medical issues other than an appendectomy in 1969. Your response is quite prudent, and I am grateful for it. I have begun to pose more questions to myself as a result of your query. Thanks again. PS - Good sense never offends me!

You are all so wonderful. This is a wonderful forum to get advice from those who really know. You are all so brave. I hope that I can be that brave. I will see the radiation oncologist again after my next brain MRI on September 10. I hope that I am brave enough to make the right decision at that time, no matter what it is! Thanks again and God bless you.

Hi Kasey, Thank you for your good wishes. You have certainly been through a lot. I'm glad that you are disease free at this time and hope you remain so for a long long time. I've not heard of an esophagus stretch. I will have to look this up. I will also take your advice and visit the Path Less Traveled postings and seek out Dean Carl. Thank you again for responding.

Although I was diagnosed with Stage IV NSCLC in April 2007, I have opted to defer treatment in order to spend some vacation time with my family. I am feeling good with no symptoms other than sligh nausea and lightheadedness in the mornings. This subsides after I eat some dry crackers. A radiation oncologist told me that I would never feel as good as I do now. I hesitate to put my family through such a horrible ordeal with the chemotherapy and whole brain radiation. Am I wrong to prefer quality over quantity of life?