Guest lightworker Posted November 28, 2003 Share Posted November 28, 2003 Hello everyone, my name is Ellen and I am a cancer survivor of ocular melanoma since 1984 and still fighing. But his isn't about me, it's about my sister who was diagnosed with non-small cell in August of 2002. As a precausionary measure, she was given whole brain radiation and went through chemo and radiaiton to the chest. Now, after having some neurological problems on her right side, they did an mri and found 8 tumors in her brain. We are all devastated and I am angry that no follow up mris were done since she was first diagnosed last year. They are going to do whole brain radiation again and then possibly gamma knife or stereotactic radio surgery. My sister is the kind of person who never questions her doctor and I feel that she should find another onocolgist but I fear that it is too late for her. The radiologist seemed optomistic but from what I have read, she may not have much longer to live. I know the doctors gave me 6 months to live about 5 years ago but I am much more of a fighter than my sister seems to be. She is 57 and has always been a very heavy smoker and I think she feels like she deserves this. Can anyone give me any advice or is there anyone on this list that lives in the Atlanta, GA area that knows of a good onocologist I can suggest to her. Thanks in advance. Ellen Quote Link to comment Share on other sites More sharing options...
ginnyde Posted November 28, 2003 Share Posted November 28, 2003 Dear Ellen, I am so sorry about your sister. Run, don't walk, to get a second opinion. An oncologist should be the lead doctor and be managing her care. I think Dr. Sam is near Atlanta and may be able to give you a name. Find his member profile and email or pm him. Good luck. Ginny Quote Link to comment Share on other sites More sharing options...
dadstimeon Posted November 28, 2003 Share Posted November 28, 2003 Hi Ellen, Very sorry to hear about your sister. Please seek a second opinion ASAP. You did not say what stage etc? Please tell your sister she does not deserve this regardless of how she got it. To never give up, it’s never to late. Take one step at a time and one day at a time as you go along. To be pro active in battling this. Learn as much as you can. Knowledge http://www.alcase.org/education/publica ... reath.html is the key. She needs you now more then ever and you know what it takes to get thru this because you are a fighter. Also have her join a support http://www.thewellnesscommunity.org/wor ... ldwide.htm group at sometime to help her down the road. This board has a lot to offer so stay with us. Hope this helps. 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 ************************************************************* Quote Link to comment Share on other sites More sharing options...
Guest lightworker Posted November 28, 2003 Share Posted November 28, 2003 Thanks so much Rich. I can only try. She has two children who don't seem to want to question her doctor but I know better. I can only hope she will listen to me. Ellen Quote Link to comment Share on other sites More sharing options...
Guest lightworker Posted November 28, 2003 Share Posted November 28, 2003 Thanks Ginny, I will try and contact him and see if he knows of someone else she can go to. I assumed she was getting regular mri's or I would have said something. I requested an mri last spring when my cancer had spread to my liver and lungs and quess what? they found a tumor on my pituiary gland. Since then I have had mri's every three to 6 months. So far, so good. Thanks again for the information. Ellen Quote Link to comment Share on other sites More sharing options...
Karen Posted November 29, 2003 Share Posted November 29, 2003 Ellen, another great place to go is www.blochcancer.org There is a letter there you can print out to give her some fighting motivation that also includes a link on resources all around the country. The creator of the site is Dick Bloch, a longterm survivor who'd only been given 3 months to live I believe. It is really worth your time to check it out. Good luck and keep us posted on how things are going. This is a great place for support. Keeping you and sis in prayer~ Karen M. Quote Link to comment Share on other sites More sharing options...
MO_Sugar Posted November 29, 2003 Share Posted November 29, 2003 Ellen, Your sister no more "Deserved" to get lung cancer than she deserves to get hit by a falling star! Only 10% of smokers get lung cancer so does that mean that 90% DON'T deserve it??? This is something that happens and no one knows why (YET!!). There ae lot's of folks here who have never smoked and they are fighting the same beast we are. With God's help we will beat it!! I hope your sister can fins an oncologist who will be aggressive in her treatment. God Bless, MO Quote Link to comment Share on other sites More sharing options...
Guest lightworker Posted November 29, 2003 Share Posted November 29, 2003 It is really worth your time to check it out. Good luck and keep us posted on how things are going. This is a great place for support. Keeping you and sis in prayer~ Karen M. Karen, thanks so much for the advice. I'll check the site out and see what information I can give her. Ellen Quote Link to comment Share on other sites More sharing options...
kimblanchard Posted November 29, 2003 Share Posted November 29, 2003 I hope everyone is aware that there is a finite number of rads (gy) any particular general or specific tissue can take, in a lifetime. If someone has already had a full series of total brain rads (WBR or PCI), they've used up a large portion, and sometimes all, of their lifetime maximum for the treated region, depending on the exposure dosage. The "shotgun" approach of total brain rad tx as a front-line, first attack against brain mets is being done less & less, because of the availability of the more precisely targeted delivery methods (IMRT, cyber-knife, gamma-knife, etcetera). These targeted methods allow your finite number of rads to be dispensed precisely where needed in an economical manner, spares healthy tissues from "beam scatter", plus further reducing the likelihood of the very substantial cognitive/neurological deficits that are more typical following total brain rads. Not to argue, but it's very doubtful that a SECOND round of total brain rads would leave ANY balance remaining in the lifetime max. for any subsequent rad tx. (Quiet honestly, it's perplexing to even calculate how the 2nd round of total brain rads could be given at any purposefulful dosage.) Logic, prudence and tx efficacy would indicate your loved one definitely needing to be evaluated by a facility offering the targeted-rad txs , QUICKLY. You've got a MAJOR family and medical EMERGENCY intervention to accomplish in a matter of days, and God knows you will need to call on Him to get this done. We applaud your wise discernment of the situation, and your courage & determination to be a loving & effective advocate! Our prayers will be with you! Quote Link to comment Share on other sites More sharing options...
Guest lightworker Posted November 29, 2003 Share Posted November 29, 2003 You've got a MAJOR family and medical EMERGENCY intervention to accomplish in a matter of days, and God knows you will need to call on Him to get this done. Jim, they have already started her on whole brain radiation again and they havel also put her on decadron. Are you a doctor? I was fearful of this also after what I had read about whole brain radiation. I'm just afraid she won't listen to me and not seek a second opinion. I do know that one of the larger tumors is on the brain stem and I know that is not good, but I don't know how much she will listen to me. Thanks so much. Ellen Quote Link to comment Share on other sites More sharing options...
Connie B Posted December 1, 2003 Share Posted December 1, 2003 Dear Ellen, I am so very sorry you have the need to join this wonderful board. HOWEVER, I just want to see if I understand what your saying about your sister. I am going to assume that your sister has Small Cell Lung Cancer???? This is WHY they did preventitive brain radiation on her prior???? I assume they gave her LOW doses of radiation treatments at that time and also did about, no more then 13 treatments at that time???? IF I assume right, then she MAY be safe to have whole brain radiation at this time. But, first to give you a helping hand, it would be best for all of us and for you, to know what type of lung cancer your sister has. It really does make a difference in helping to share information with you. And no, I'm not a doctor. I'm just a 8-1/2 year lung cancer survivor. (smile)! God Bless and Good luck. Quote Link to comment Share on other sites More sharing options...
Guest lightworker Posted December 1, 2003 Share Posted December 1, 2003 Connie, thanks so much for your help. I mentnioned in my origional post that my sister had non-small cell but I found out yesterday that she does in fact have small cell. She has had 10 treatments of low dose radiation earlier this year, Jan. or Feb.. I just rec'd another e-mail from a radiologist specialist in Augusta, GA that agrees with the second round of whole brain radiation, especially if she is having neurological symptoms which she is having. She can't write, just scribbles and has trouble with her right leg so she can't drive and has trouble going up and down stairs. She is suppose to have 10 rounds of whole brain radiation and then more scans. Thanks to your post, I feel a little better. I'm just afraid she will give up and I know from what I have been through how important it is to stay strong. Thanks again, Ellen Quote Link to comment Share on other sites More sharing options...
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