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Any ideas??


jess

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Hi all

This is only my second time posting. My aunt was diagonosed at the end of November. She has brain mets also. They did 2 weeks of whole brain radiation and said 2 weeks later chemo would start. Now, all of a sudden, her onc tells her "there is nothing else we can do for you...i can't cure you". Just 2 weeks before everything seemed so much more encouraging. I feel like my family has given up hope. Everybody is so devastated and frustrated. My little cousins still need their mom!!!! And my poor grandma is having the worst time. I can't imagine watching my child go through this. Does anybody have any ideas or suggestions on anything to help us? We are not new to cancer but definitely new to lung cancer.

Thanks Jess

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Hi Jess,

Sorry you have to be here. You will find a lot of support here and members here will be giving you a lot of good advice. We are all like family here and care about one another and you are now included in our family. What I would do is get a second or even a third opinion. Don't let your aunt give up. I don't understand the doctors reasoning and not wanting to treat her. Has she had CT, MRI, bone or PET scan? Do you live in a big city? You need to find a cancer care center. She needs to have all of these tests done. Have they staged her?

Hang in there and don't give up. Come here to ask questions and you WILL get answers. Keep us posted and stay in touch and let us know how your aunt is doing. It sounds like she is young. Prayers for you and your family...

God Bless

Karen

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Hi Jess,

Sorry to hear about your aunt. You do not give much information. Is it non small cell lung cancer or small cell lung cancer? What stage? Like Karen said please get a second/third opinion. Stay focused and positive. Do not give up. Research (below are some websites to help you get started / also some questions to ask)) as much as you can. Stay with us. Lots of great people and information and support. Hope this helps. Peace, take care and God Bless.

Rich

Questions to Ask the Doctor:

For all patients with lung cancer:

·What is my diagnosis?

·What is the stage of my lung cancer?

·Should I see another doctor to assist in my care, such as a thoracic surgeon, radiation oncologist, medical oncologist, or pulmonologist?

·Do I need additional scans or biopsies in order to plan my treatment?

·What is the goal of my treatment?

·Besides treating my cancer, what can be done to treat my symptoms?

·Are there any other treatment options available to me?

·Are there any clinical trials for which I am eligible?

For patients who are to receive chemotherapy:

·What are the names of the chemotherapy drugs, and how are they given?

·What are the side effects of this chemotherapy? What symptoms or problems should I look out for?

·What can be done to lessen these side effects?

·How often will I need to visit the doctor and how long will each visit take?

For patients who are to receive radiation therapy:

·How will my treatment be planned (what types of scans will be used)?

·How much of the normal lung will be included in the radiation field?

·Is it possible for me to receive chemotherapy with my radiation? If so, what are the added side effects of giving the chemotherapy at the same time, compared to one after another?

For patients considering a clinical trial:

·What are my options for standard treatment?

·What other clinical trials are available to me?

·How will my experience differ if I enroll in this clinical trial, as opposed to standard treatment (different risks, extra tests or time commitment, schedule)?

·What is the goal of this clinical trial (is this a phase I, II, or III clinical trial)?

For patients who have completed all of their treatment:

·What are the chances that my cancer will return?

·Is there anything more I can do to reduce the chance that my cancer will return?

·How often should I visit the doctor to follow up?

·What tests will I have during my follow up?

For patients who smoke:

·Can you help me to quit smoking?

*************************************************************

The Power Of People Helping People / The Power Of Knowledge / The Power Of God / The Power Of Believing / The Power Of Positive Thinking / The Power Of Never Taking No For An Answer / That’s The Key

*************************************************************

http://www.usnews.com/usnews/nycu/healt ... hqcanc.htm (Best Hospitals)

https://www.alcase.org/advocacy/sign_the_petition.html (Advocacy /Sign the Petition)

http://www.cancersymptoms.org (Oncology Nursing Society)

http://www.plwc.org/plwc/MainConstructo ... 08,00.html (Questions to Ask the Doctor)

http://www.alcase.org/education/publica ... reath.html (With Every Breath A Lung Cancer Guidebook / From ALCASE / A Wealth Of Information / Free)

http://www.cancersurvivaltoolbox.org (The Cancer Survival Toolbox / Free / From NCCS)

http://www.centerwatch.com (Clinical Trails Listing Service / Center Watch)

http://news.google.com/news?hl=en&editi ... ung+cancer (Lung Cancer In The News)

http://www.thewellnesscommunity.org/pro ... /guide.asp (The Wellness Community / National Cancer Support, Education And Support / Free)

http://www.drugs.com (Drug Information Online)

http://www.alcase.org (ALCASE / Alliance For Lung Cancer Advocacy, Support, Education)

http://www.nlm.nih.gov (Unites States / National Library Of Medicine)

http://www.nlm.nih.gov/medlineplus/encyclopedia.html (Health Information / Medical Encyclopedia)

http://www.google.com (Great Search Engine)

http://blochcancer.org (R.A. Bloch Cancer Foundation, Inc. / Please read: A Letter to all newly diagnosed cancer patients)

http://www.cancer.org (American Cancer Society)

http://www.cancer.gov (Cancer Information Service / NCI)

http://www.cancerresearchcenter.org (Cancer Research Center)

http://www.aicr.org (American Institute for Cancer Research; Nutrition Hotline / AICR)

http://www.cancerhopenetwork.org (Cancer Hope Network)

http://www.acor.org (Association of Cancer Online Resources / Free Online Lifeline For Everyone Affected By Cancer & Related Disorders)

http://www.meds.com/lung/lunginfo.html (Lung Cancer Information Library)

http://www.lungusa.org (American Lung Association)

http://www.ama-assn.org (American Medical Association)

http://www.docguide.com/news/content.ns ... g%20Cancer (Doctor’s Guide / Lung Cancer)

http://www.healthfinder.gov/Scripts/Sea ... ?topic=506 (Healthfinder)

http://www.medicinenet.com/Lung_Cancer/article.htm (Medicine Net)

http://www.cancerindex.org/clinks2l.htm (Cancer Index / Lung Cancer Resources Directory)

http://www.nfcr.org/site/PageServer?pag ... ncers_lung (National Foundation For Cancer Research)

http://www.patientadvocate.org (Patient Advocate Foundation)

http://www.lungcanceronline.org/effects ... fects.html (Lung Cancer Online / Hematologic (Blood) Effects)

http://www.cancerlinks.org/lung.html (Lung Cancer Links)

http://www.cancer-free.com (Cancer Free Connections)

http://www.healthinsite.gov.au/topics/C ... ung_cancer (Health Insite)

http://www.lungcancerclaims.com (Lung Cancer / Lung Cancer Information Page)

http://www.cancerlifecenter.com/engine. ... =dictionar (Cancer Life Center/ Cancer Dictionary)

http://www.canceryellowpages.com/Resour ... G%20CANCER (Cancer yellow Pages)

http://icare.org (ICARE / The International Cancer Alliance)

http://www.vh.org/index.html (Virtual Hospital)

http://www.lungcanceronline.org/support/financial.html (Lung Cancer Online / Financial, Legal & Insurance Issues)

http://cancernews.healthology.com/focus ... cancernews (Cancer News)

************************************************************

If I Could Catch a Rainbow:

If I could catch a rainbow, I would do it just for you, And share with you its beauty, On the days you’re feeling blue. If I could build a mountain, You call your very own, A place to find serenity, A place to be alone. If I could take your troubles, I would toss them in the sea, But all these things I’m finding, Are impossible for me. I cannot build a mountain, Or catch a rainbow fair, But let me be what I know best A friend that’s always there. Author Unknown

*************************************************************

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Karen and Rich, thanks for the input! She has had all the scans/tests done. She is being cared for at a cancer center in a big city. She has at least 10 brain mets. NSCLC and a non-smoker for life. 46 years old with 3 children. She is having no symptoms at all from her lung tumor. She was having dizziness and headaches and that led to the brain mets. The lung tumor was found after that. I believe she is stage IV. I know that it's tough to treat what she has but how she can be expected to want to fight when she had drs that are so negative. I'm not looking for false hope but at least encouragement and information from those that we rely on to care for us (doctors). I am a cancer survivor and I know how hard it is but I don't want her to feel like this is it. Like the world ended yesterday. We are in the process of getting 2nd/3rd opinions. I have another family member that works at a big hospital and the drs she has talked to have pretty much said the same thing. I see so much hope and positive thinking on this website and I'm so thankful to have found it. Even though I've only posted twice I log on and read up on all of you everyday. It helps so much. Thanks in advance for any info you all have.

Jess

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Jess,

If you've read the posts here you know that many of the folks here have taken different routes and have different philosophies when it comes to this disease. But there is one thing we ALL agree on. It's the PATIENTS decision on how to be treated. It's a sad fact that the one person who is in the worst position to do so must be the one that stands up and says, "THIS is what I want!" (and has to be willing to say it as LOUD and as LONG as needed to be heard), but that is, unfortunately, the way it ever so often is.

Get all the information you can about this disease. Look at it from every angle possible. And once your aunt has decided what SHE wants ... go for it! Don't let ANYONE tell her how to treat her own body. If the doctors you have don't want to listen, find another doctor who will. If that's not an option (which it isn't with me) every hospital I know of has a patient advocates office. I've use the one where I go. It resulted in me getting a call from the head oncologist at 8:15 on a Tuesday night to discuss my case AND I got what I wanted.

I cannot emphisize this point enough to anybody reading this. IT'S YOUR BODY. IT'S YOUR LIFE!!! You, or your loved one, has the unequivical RIGHT to live it as you/they choose. Doctors can be dedicated, wonderful people (I'm lucky enough to have one who is just that (now :)), or than can be arrogant, "I know everything and you don't" jerks. When you run up against the latter, don't be afraid to stuff it right back in his/her face and use whatever method available to get the respect and treatment YOU decide is right for you.

Oh my, I did go off a bit didn't I? :)

Jess, here's paying for you and your aunt and family. I hope you can find what you need.

Dean

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Dean

Thanks for your reply!! I'm telling you, this is one of the most supportive sites I've ever seen. I agree with everything you said. Now, the thing is getting my aunt to agree. She is so lost with all of this and so much has happened in the last month. She is in good health otherwise. And as I said before her only symptoms were from the brain mets and those were mild symptoms at that. Her dr said that if she chose chemo it would just make her sick and she would probably be sick until she started exhibiting symptoms from the lung tumor itself. Almost seems to me like they are just blowing her off since the cancer is extensive and has spread. How can they expect people to be strong and want to fight when they are shown that type of treatmen?? Thanks again for your support and prayers

Jess

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She could possibly be eligible for different clinical trials.

There is a drug called Xcytrin that is in Phase III trials.

Also a drug called Temozolomide is trials for brain mets.

It is very important that patients examine clinical trials before

undergoing treatment, because it may exclude them from different trials

Tare care

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Jess,

There are some Phase 1 clinical trials that are hopeful. We found an oncologist who helped us screen the trials to help pick not only the ones that my wife would qualify for but also the ones that were promising. We had to do the research ourselves and then forward the info to the oncologist. He would screen them and make recommendations. Don't give up.

Jim

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Jess,

If your aunt has the desire to fight this thing, I am certain she will find an oncologist somewhere willing to fight with her. Have you tried NIH? National Cancer Institute? for trials on LC/mets to brain? They have a terrific team there, both surgical and radiological. I don't know about chemo, but if there are clinical trials, they may help there. What part of the country are you from?

Your aunt, should she decide to want to be aggressive in her fight, has every incentive in the world to fight with children still small enough to need her. That is what kept me going, and at times the only thing that kept me from going under. I am still here, and I should have been dust by now.

Remember, the statistics you read now about 5 years are only as good as the treatment available 5 YEARS AGO!!

Find a good Cancer Center. Find an oncologist who is willing to help your aunt evaluate various options, not limit her choices to one. And back her up all the way. Dean gives good advice. And Rich is a gold mine of sites to mine, questions to ask. We are here to give you all quiet hugs and a shoulder and an ear. And prayers. I believe in the power of prayer.

Know we will be keeping you in our thoughts and prayers.

MaryAnn

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