jess Posted December 5, 2003 Share Posted December 5, 2003 Hi All! I am new to this forum. My aunt was just diagnosed with lung cancer. I don't have all the specifics but the doctors are saying that the lung tumor is too big to operate on. Its spread to the brain and they say that she has at least 10 tumors on the brain. Originally they told us she only had 2 tumors in the brain and then within 1 week changed it to 10! They aren't even treating the lung tumor. They are doing whole brain radiation now. From what I've read on the internet this has a very poor outcome but being a cancer survivor myself I know that even the poorest odds can be beat!!! Anybody have any advice,suggestions, experience etc????? Anything would be very much appreciated. I am really struggling with this and want to do anything I can to help Thanks, Jess Quote Link to comment Share on other sites More sharing options...
Lisa O Posted December 5, 2003 Share Posted December 5, 2003 I am new to this forum - this is a very knowlegable and welcoming group. You are right that one cannot just go with a doctor's "odds" -- that is a good place to start. There are several different types of lung cancer. It would be helpful in researching for you aunt if you first determined whether she had small cell or non small cell because the treatments and behaviors are different. The support lists on this board are also broken down into very educated groups on each. Nonsmall cell also has subgroups which include various types - for example, adenocarcinoma, squamous cell... I have no personal experience with whole brain radiation. My daughter had gamma knife for an AVM which went quite well but that is more targeted brain radiation. She has no after affect so far (procedure was last August) I wish you and your Aunt the best. She is fortunate to have you supporting her on the net!!! You will find a lot of help here! Lisa Quote Link to comment Share on other sites More sharing options...
dadstimeon Posted December 5, 2003 Share Posted December 5, 2003 Hi Jess, I’m sorry to hear about your aunt. This is a great place, with great people and lots of information. When you get more info let us know. Take one step at a time and one day at a time. Learn as much as you can about lung (The Power Of Knowledge) cancer. Never give up. Be pro-active. Below are some websites for lots of information to gather. Hope this helps for now. Peace, take care and God Bless. Rich ************************************************************* 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 ************************************************************* With Every Breath A Lung Cancer Guidebook / From ALCASE / A Wealth Of Information / Free http://www.alcase.org/education/publica ... reath.html The Cancer Survival Toolbox / Free / From NCCS http://www.cancersurvivaltoolbox.org Clinical Trails Listing Service / Center Watch http://www.centerwatch.com Lung Cancer In The News / GOOGLE http://news.google.com/news?hl=en&editi ... ung+cancer The Wellness Community / National Cancer Support, Education And Support / Free http://www.thewellnesscommunity.org/pro ... /guide.asp Drug Information Online http://www.drugs.com ALCASE / Alliance For Lung Cancer Advocacy, Support, Education http://www.alcase.org Unites States / National Library Of Medicine http://www.nlm.nih.gov Health Information / Medical Encyclopedia http://www.nlm.nih.gov/medlineplus/encyclopedia.html Google / Great Search Engine http://www.google.com R.A. Bloch Cancer Foundation, Inc. / Please read: A Letter to all newly diagnosed cancer patients http://blochcancer.org American Cancer Society / No Matter Who You Are, We Can Help http://www.cancer.org Cancer Information Service / NCI http://www.cancer.gov Cancer Research Center / A Cure For Cancer... http://www.cancerresearchcenter.org American Institute for Cancer Research; Nutrition Hotline / AICR http://www.aicr.org Cancer Hope Network / Cancer? http://www.cancerhopenetwork.org Association of Cancer Online Resources / Free Online Lifeline For Everyone Affected By Cancer & Related Disorders http://www.acor.org Lung Cancer Information Library / Electronic Library Of Comprehensive Educational Materials On Cancer For Healthcare Professionals And Patients. http://www.meds.com/lung/lunginfo.html ************************************************************* Quote Link to comment Share on other sites More sharing options...
Guest DaveG Posted December 5, 2003 Share Posted December 5, 2003 Several of my friends from the Lung Cancer Support and Advocacy Group, U of Wisconsin Comprehensive Cancer Center, have gone through whole brain radiation successfully. I am a Stage IV survivor of NSCLC. I was an 18 month survivor of Stage I adenocarcinoma and had 2 surgeries, October 2001, and September 2002. I was restaged to Stage IV this past April after it was discovered that the cancer had recurred and I had mets to my lymphatic system. I went into a clinical trial and 6 cycles of Carboplatin/Taxol, given every 3 weeks. My last chemo was September 2. I continued on the clinical trial drug, ABT-510, which involved a self administered shot each day, although my wife usually gave me the shot. On September 25 I had a CT scan which revealed that the tumors in my lymphatic system had either stabilized or were gone completely. No new tumors had appeared. On November 4, I had another CT Scan which revealed that I now have mets to the liver. I was removed from the clinical trial and given a 4 week washout period, as I was entering a new clinical trial. This new clinical trial will be testing the efficacy of ZD6474 against Iressa. It is a double blind Phase II trial. I will be receiving one of the drugs, in pill form, but won't know which drug. I will also be taking a placebo along with the drug. The reason I bring this up is because having lung cancer can be like riding down a very bumpy road. Sometimes the road is very smooth and them sometimes it is filled with pot holes. I am going through the pot holes right now. Having survived lung cancer for over 2 years, I am very thankful for the time I have had. In the last two years I have met, both personally and over the internet, some very ammazing and inspirational people with lung cancer. Many of these people have helped me get through the low periods. I have also experienced the reality of lung cancer, in that 3 close friends have died of lung cancer. There are many clinical trials available for lung cancer. You may have to do some investigating to find which medical center are offering trial and which ones they are offering. I am fortunate in that I livee 45 miles from the University of Wisconsin Comprehensive Cancer Center and I am a patient of Dr. Joan Schiller. UW has many trials going on right now. I am the first, at UW, to be entered in the trial I am on. I have found one other person, a member of this group (LCSC) who has been on the same trial for over 6 months, at a different medical center. I am anxious to "compare notes" and we go along. Jess, don't be afraid to ask questions and by all means encourage your aunt to become her own advocate. I am 60 years old and was just short of 58th birthday when I was diagnosed. I am looking for success and I expect to succeed. It may not be easy and I expect that I will have my share of "down days". I am not giving up, but I am looking forward to many more years, by taking each year one year at a time. Quote Link to comment Share on other sites More sharing options...
jess Posted December 5, 2003 Author Share Posted December 5, 2003 Thanks to all who have responded so quicky!!! I have been using a forum similar to this for thyroid cancer for the last 4 years and have never had people answer so quickly or compassionately!! I very much appreciate this. My family is devastated over this news about my aunt. She is in her late 40's and has 3 kids. Most of my family seems to focus on the statistics and I am trying to focus on fighting this and keeping the stats in the back of my head for future reference. I don't want my aunt or my family to just give up!!! I want to make them see that we all need to help and encourage my aunt to fight this!!! This is the 5th person in our family to get cancer in the last 6 years and it's getting very hard. I'm thankful for this board and all the things I've learned from it already. I think my biggest concern at this point is that they are choosing to treat the brain mets and not the lung cancer right now. Everything I've read so far says that whole brain radiation is most effective when the primary tumor is being treated also and hers isn't. I've had a horrible time with doctors when treating my own cancer and I have trouble trusting them now and I fear they aren't doing the best they can for my aunt. Thanks again for all of your input. Jess Quote Link to comment Share on other sites More sharing options...
jess Posted December 5, 2003 Author Share Posted December 5, 2003 Rich!!! Thank you for the links to the other websites. I'll be visiting them shortly. I myself am a Christian and I've been praying about this constantly. I have faith that The Lord will see us through this and make us stronger. I will be strong and encouraging and do whatever I can do to help my aunt beat this! Thank you and God Bless you!! Jess Quote Link to comment Share on other sites More sharing options...
MO_Sugar Posted December 5, 2003 Share Posted December 5, 2003 Jess, Where is your Aunt being treated? At a Cancer Center or a local hospital? Sometimes it makes a BIG difference as to the type of treatmet received. I would always suggest a second (or third or fourth) opinion also. I have been in favor of the most aggresive treatment available, at least for me. I think it goes back to my Viking forefathers, lol. God Bless and prayers being said for your Aunt and your family. MO Quote Link to comment Share on other sites More sharing options...
dadstimeon Posted December 5, 2003 Share Posted December 5, 2003 Hi Jess, Your most welcomed. I also added more to the list. Glad I can help. Peace, take care and God Bless. Rich ************************************************************* 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 ************************************************************* Questions To Ask The Doctor About Lung Cancer http://www.plwc.org/plwc/MainConstructo ... 08,00.html With Every Breath A Lung Cancer Guidebook / From ALCASE / A Wealth Of Information / Free http://www.alcase.org/education/publica ... reath.html The Cancer Survival Toolbox / Free / From NCCS http://www.cancersurvivaltoolbox.org Clinical Trails Listing Service / Center Watch http://www.centerwatch.com Lung Cancer In The News / GOOGLE http://news.google.com/news?hl=en&editi ... ung+cancer The Wellness Community / National Cancer Support, Education And Support / Free http://www.thewellnesscommunity.org/pro ... /guide.asp Drug Information Online http://www.drugs.com ALCASE / Alliance For Lung Cancer Advocacy, Support, Education http://www.alcase.org Unites States / National Library Of Medicine http://www.nlm.nih.gov Health Information / Medical Encyclopedia http://www.nlm.nih.gov/medlineplus/encyclopedia.html Google / Great Search Engine http://www.google.com R.A. Bloch Cancer Foundation, Inc. / Please read: A Letter to all newly diagnosed cancer patients http://blochcancer.org American Cancer Society / No Matter Who You Are, We Can Help http://www.cancer.org Cancer Information Service / NCI http://www.cancer.gov Cancer Research Center / A Cure For Cancer... http://www.cancerresearchcenter.org American Institute for Cancer Research; Nutrition Hotline / AICR http://www.aicr.org Cancer Hope Network / Cancer? http://www.cancerhopenetwork.org Association of Cancer Online Resources / Free Online Lifeline For Everyone Affected By Cancer & Related Disorders http://www.acor.org Lung Cancer Information Library / Electronic Library Of Comprehensive Educational Materials On Cancer For Healthcare Professionals And Patients http://www.meds.com/lung/lunginfo.html American Lung Association / ALA http://www.lungusa.org American Medical Association / Physicians Dedicated To The Health Of America http://www.ama-assn.org Doctor’s Guide / Lung Cancer http://www.docguide.com/news/content.ns ... g%20Cancer Healthfinder / Your Guide To Reliable Health Information http://www.healthfinder.gov/Scripts/Sea ... ?topic=506 Medicine Net / We Bring Doctor’s Knowledge To You http://www.medicinenet.com/Lung_Cancer/article.htm Lung Cancer Online / Financial, Legal & Insurance Issues http://www.lungcanceronline.org/support/financial.html Cancer Index / Lung Cancer Resources Directory http://www.cancerindex.org/clinks2l.htm National Foundation For Cancer Research / NFCR Cancer Information Center http://www.nfcr.org/site/PageServer?pag ... ncers_lung Patient Advocate Foundation / Ensuring Equal Access To Health Care For All Americans http://www.patientadvocate.org Lung Cancer Online / Hematologic (Blood) Effects http://www.lungcanceronline.org/effects ... fects.html Lung Cancer Links / Cancerlinks Index http://www.cancerlinks.org/lung.html Cancer Free Connections / Life-Saving & Life-Giving Resources http://www.cancer-free.com Health Insite / Information On Lung Cancers http://www.healthinsite.gov.au/topics/C ... ung_cancer Lung Cancer / Lung Cancer Information Page http://www.lungcancerclaims.com ************************************************************ 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 ************************************************************* Quote Link to comment Share on other sites More sharing options...
bobmc Posted December 5, 2003 Share Posted December 5, 2003 Hello Jess First, welcome and so very sorry your aunt has been diagnosed with this beast. I can see from your comments and from being a survivor yourself that your quite knowledgable. I absolutely agree with your comment about not trusting the doc.'s. As survivors I feel it's paramount that we be the advocate for our own health. For me, thats means learning about the disease, getting second opinions, obtaining treatment at the best cancer facilities, joining a support group and helping others. I can also see that your aunt is very lucky to have you with all your experience in her corner. Please, please tell them to screw the stats. My own opinion is that there obsolete. There have been so many new advances in treatment over the last few years and statistical studies are just plain lagging behind. New chemo regiments, targeted therapies like Iressa, advances in radiation methods and even more thorough follow up care are outpacing the stats. I can't really help with the radiation concern, but would encourage her to get a second opinion. I am so far one of the lucky ones. I was stageIIB, and had my left lung removed over 2 and 1/2 yr.'s ago. I had no chemo or radiation. But, I have been a member here for over a year now and have a whole lot of knowledable friends that will provide their input. so my best to you the family and especially your aunt, please tell her about us and that she's not alone!! there are SURVIVORS in every stage. God bless and be well Bobmc- NSCLC- stageIIB- left pneumonectomy- 5/2/01 " absolutely insist on enjoying life today!" Quote Link to comment Share on other sites More sharing options...
mhutch1366 Posted December 8, 2003 Share Posted December 8, 2003 Jess, Glad you are here with us now. My stats were so abysmal I didn't want to find them out until a year after the surgery. I just focused on me. If your research shows that primary treatment will increase your aunt's treatment efficacy, then be proactive and "pushy" and ask the doctors about it. and ask. and ask. and ask. They'll get the idea. Write things down, too. Not just what the doctors say, but also a really good research log. It will help to refer back to on this roller coaster ride. Prayers for you and your aunt. God bless, MaryAnn Quote Link to comment Share on other sites More sharing options...
jess Posted December 9, 2003 Author Share Posted December 9, 2003 Thanks again to all have responded!! I have felt so much support in the few days that I have been visiting this website. It's wonderful. Mo, Bobmc and Maryann...thanks for your recent input I do appreciate it. My aunt is being treated at a nearby cancer center. The more research I do the more it seems like they are treating her appropriately. She will finish whole brain radiation this week. After Christmas she will start chemo for the lung tumor. I can't remember the size of the tumor off the top of my head now and I still haven't gotten the 'exact' diagnosis of her lung cancer. Small cell or Non-small cell I'm not sure. From everything I have read my guess is that it's non-small cell. We are all trying to stay positive and encouraging and supportive. I want to tell all of you that read this that I am so amazed by all of you. I read your stories and tears come to my eyes. Tears of amazement that we are surrounded by such strong people! Even during the tough times people can manage to stay positive and focus on moving forward. I know myself how hard that can be when dealing with cancer and everyday you don't necessarily feel like moving forward but you people are great!!! I keep telling myself that we HAVE to focus on today. If my aunt is having a good day today then today is a good day. We can't think about yesterday or tomorrow or next week because you never know what might happen. Be happy that today is a good day and enjoy it!! Thanks again! Jess Quote Link to comment Share on other sites More sharing options...
norme Posted December 10, 2003 Share Posted December 10, 2003 Jess, My husband Buddy had his left lung removed then the cancer showed in the brain in three spots. He had whole head radiation and so far it has not shown its ugly face back. I am a great believer in whole head radiation for that reason. I believe the reason for the radiation first on the brain is because anyone of the tumors can touch a vital spot in the brain and cause your aunt to lose control of her walking, speaking, etc, so I would think that the brain must be fixed first. Tell her we will put her in our prayers. Your family has been hit hard. God Bless.... Quote Link to comment Share on other sites More sharing options...
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