CancerCompass message board discussion started by bensisco on 4/18/2008 http://www.cancercompass.com/message-board/message/all,23169,0.htm Mon, 01 Dec 2008 00:00:00 GMT Mon, 01 Dec 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ Hi, all,I've posted recently about my mother and her stage IV lung cancer. We are scheduled for a second opinion at University of Alabama on April 24 unless she's still in her current hospital (they're trying to make sure they clear up an infection). Anyway, you can read her story below, but I'm wondering what I should do in terms of a back up plan if the second opinion is not favorable. My family can't bear giving up. I know there must be an oncologist out there somewhere who is willing to fight agressively and innovatively if the patient still desires treatment. Maybe there's a hospital with a good track record of handling metastized cancers such as this. Even a promising clinical trial that she might qualify for to buy her some time. I'm already researching at cancer.gov and Livestrong.org. I guess I'll have more info after the second opinion. But any advice would be appreciated (not looking for let her go advice just yet). Sorry if I sound desperate and naive, but I'm probably both at this point.Thank you. I should know the details of the extent of my mother's cancer from the second opinion since her first doctor never explained anything in detail (just generalizations and the final bad news). If you haven't read her story, basically my 58 yr old mother was diagnosed stage IV 1/1/2008 (lung and brain). Given 15 whole brain radiation treatments and 3 chemo sessions of Taxol/Carboplatin. Family was told by her doctors in early February that the brain lesions were eradicated, no new growth in lung and that we didn't need a second opinion because the small hospital she was at could handle it. February 2008 she was taken off of chemo (after the 3 treatments) to supposedly get stronger in prep for more chemo (but doctor also suggested putting her on hospice for home healthcare). From mid February to April she did not eat well. She was hospitalized a couple of times for dehydration and had back surgery done. Back surgery revealed a suspicious area that received 3 radiation treatments at end of March. First week of April doctor says it's still the plan to give her more chemo later and I suggested he give her Megace to stimulate appetite. Then April 11 the same doctor says he suddenly realizes she has much more cancer than he thought (lung, spine, maybe belly) and she should go on hospice. Says 3 radiation treatments to spine and the previous chemo hadn't worked and he didn't see a reason to try other chemo or treatments. Now she is eating better and seems to be getting stronger. bensisco Fri, 18 Apr 2008 00:00:00 GMT I am so sorry to hear about your Mom.  But something doesn't sound right here.  By all means get a second opinion as quickly as possible.  If she was only diagnosed in February, you still have time.  Insist that the current doctors provide you with all test results, including blood work, and take them with you for the second opinion.  Ask questions.  Find out exactly what type cancer she has and exactly where it is.  A PET scan should tell you that.  Has a biopsy been done?  Find out what her CEA results are.   CEA is a tumor marker that helps the onc determine whether the cancer is progressing.  Ask about EGFR blood test results.  If the number is 60 or higher, she may be a candidate for Tarceva.  The good thing about Tarceva is it crosses the blood/brain barrier and helps prevent brain tumors/lesions.There is always hope.  Don't give up.  You are right to pursue another avenue.  Your Mom's life is at stake and she is lucky to have you looking our for her.  You are doing the right thing.  There are new treatments coming out every day.  I have stage 4 lung cancer both lungs but no other mets.  Have been on Tarceva for 18 months and doing great.  Please keep us informed as to what you learn.  That way we can help you better with more accurate info.  God Bless you both.  And DON'T give up. Chessie Fri, 18 Apr 2008 00:00:00 GMT Thank you Chessie for the advice and encouragement. I'll raise these suggestions with the new doctor when we go for the second opinion. bensisco Fri, 18 Apr 2008 00:00:00 GMT I understand how you feel.  My mom 68 diagnosed with NSCLC with Met to brain and adrenal gland on September 17th.  She has 15 WBT's and one Gamma Knife treatment. Brain tumor shrunk about 1/2 it's size.  She was then given 6 chemo treatments with 3 medicines, 3 weeks apart.  My mom got very week from this and developed a DVT and Nuropathy in hands and feet.  She is very tired all the time.  Doctor said more chemo would not make her better just worse.  I believe him and have confidence that he is doing the right thing.  My dad who lives in Indlps called a very good friend of his who is an oncologist and he said he would stop her treatments also.  She is stable right now and seems to be getting a little stronger, but not much.  People do continue to live w/o chemo and sometimes they live more confortably.  I believe my mom is, the chemo was really killing her, but everyone is different.  I am sorry for what you are going through and there is nothing I can say to make you feel better.  I wish there was. Passcon93 Fri, 18 Apr 2008 00:00:00 GMT I'm sorry to hear about your mother's situation Passcon93. I'll pray for you guys.   bensisco Fri, 18 Apr 2008 00:00:00 GMT morning 8 am:a powder called malt which is made from different types of cereals & grains like (Ragi,wheat,mungdal,soyabeans,chik peas ,green peas,&  few of the cereals which have cancer fighting power)is lightly roasted & finely ground into powder.this powder is taken some 6 teaspoons & mixed in some two glasses of water & bring it to boil & boil for 2 mintues cool it & drink it ,this powder can be made & stored for 1 month.morning 9 am :she is made to stand in the sunlight for 30 mintuesmorning 10 am: she is taking apple juice which is made in water without removing the skin,& breathing exercise.10.30 am:a breakfast which has lots of green vegetables & 1 bowl of sported grains or any coloured vegeeis of your choice,& one banana.  11 am :she takes some rest for 2 hours or relax herself 1 pm:lunch that cantains some coloured vegetables & a big bowl of papaya1.30 pm:mint juice (some 20 mint leaves are grinded in the mixer with plain water & mixed with salt & 1/2 lemon)about 1 glass ,again breathing exercise & 1 banana.she relax for some time wakeup at 4.30pm 5 pm: a juice made from 1/4 beet root,1 medium size carrot,& one tomoto all are boiled in water grinded in mixer & some salt & pepper is added.i forgot she is taking garlic flakes in lunch & dinner some 20 flakes lightly roasted & lot of spinach,and dark greeny vegetables are included in her lunch & dinner.6 pm: green tea 2 cups7 pm:1 banana & breathing exercise8 pm: pomogranate & black or red grapes(some 30)is grinded into a juice & is taken .8.30pm:dry fruits (grapes,pea nuts,almonds(10),figs,apricots ,dry dates all soaked in water for some 6 hours & included in dinner,with all these iam giving her some ayurvedic immune boosting tonics trice daily & supplements like folic acid tablets, b-complex tablets twice daily.if any doubts u can mail me ,as to my knowledge all these are helping for & faith in god also.bye take caregouri  shilpa Sat, 19 Apr 2008 00:00:00 GMT  On 4/18/2008 bensisco wrote:Hi, all,I've posted recently about my mother and her stage IV lung cancer. We are scheduled for a second opinion at University of Alabama on April 24 unless she's still in her current hospital (they're trying to make sure they clear up an infection). Anyway, you can read her story below, but I'm wondering what I should do in terms of a back up plan if the second opinion is not favorable. My family can't bear giving up. I know there must be an oncologist out there somewhere who is willing to fight agressively and innovatively if the patient still desires treatment. Maybe there's a hospital with a good track record of handling metastized cancers such as this. Even a promising clinical trial that she might qualify for to buy her some time. I'm already researching at cancer.gov and Livestrong.org. I guess I'll have more info after the second opinion. But any advice would be appreciated (not looking for let her go advice just yet). Sorry if I sound desperate and naive, but I'm probably both at this point.Thank you. I should know the details of the extent of my mother's cancer from the second opinion since her first doctor never explained anything in detail (just generalizations and the final bad news). If you haven't read her story, basically my 58 yr old mother was diagnosed stage IV 1/1/2008 (lung and brain). Given 15 whole brain radiation treatments and 3 chemo sessions of Taxol/Carboplatin. Family was told by her doctors in early February that the brain lesions were eradicated, no new growth in lung and that we didn't need a second opinion because the small hospital she was at could handle it. February 2008 she was taken off of chemo (after the 3 treatments) to supposedly get stronger in prep for more chemo (but doctor also suggested putting her on hospice for home healthcare). From mid February to April she did not eat well. She was hospitalized a couple of times for dehydration and had back surgery done. Back surgery revealed a suspicious area that received 3 radiation treatments at end of March. First week of April doctor says it's still the plan to give her more chemo later and I suggested he give her Megace to stimulate appetite. Then April 11 the same doctor says he suddenly realizes she has much more cancer than he thought (lung, spine, maybe belly) and she should go on hospice. Says 3 radiation treatments to spine and the previous chemo hadn't worked and he didn't see a reason to try other chemo or treatments. Now she is eating better and seems to be getting stronger.I am so sorry to hear of your situation - and also a bit angry at your doctor.  I was dx w/Stg IV NSCLC w/mets to the brain, liver and bones, in April 2005, by an oncologist who advised me that I was going to die, and along the way I didn't need to try to find clinical trials because I wouldn't qualify for a variety of reasons, like having had conventional chemo, rads for the brain mets, blah, blah, blah.  What he didn't know was that I had already obtained not only a 2nd and a 3rd opinion, but had also been accepted into a clinical trial at University of Arizona in Tucson, AZ.   I kept that final appointment with him to tell him the good news - last week I went into his office to say "hi - I'm still breathing" - I hope that seeing me in the great shape I'm in changed his arrogant attitude.  Anyway, the Dr at Tucson is Linda Garland - the first time I saw her, having already been written off by 2 oncologists, I told her that I intended to fight this until I died or I changed my mind about fighting and if she wasn't OK with that, then I wouldn't agree to be her patient.  She agreed 100% and has maintained that approach.  So if you can get into see her ( or any of the fine doctors there ), I would really recommend them. Cancer is what they do.  But where ever you are, never give up just because some Dr thinks he/she is God, and hang in there!!I'll say a prayer for all of you!Laura  Bentley Mon, 21 Apr 2008 00:00:00 GMT Thank you for the advice and encouragement Bentley/Laura. I just stopped by the board while at work. In fact, if the new doctor providing the second opinion doesn't have promising news then I will be contacting other doctors that people like yourself are recommending. Thanks again. bensisco Mon, 21 Apr 2008 00:00:00 GMT Your dr. sounds as arrogant as my husbands. He has stage 4 mets to brain, had 15 whole brain rad. and 4 chemo. He is extremely weak, losing weight, not eating, very painfullegs with swelling. The oncologist told him to stop quote" stop complaining, complaining, complaining or the cancer will  win. If you want to whine or quit I will suport you in this. End of quote What a jerk. I can not stand this attitude. I have known my husband for 45 years, this arrogant Dr. has seen him 5 times and he labels him depressed and a quitter. Nothing could be farther from the truth. I am sending reports out tomorrow for second opinions. Some of these drs should not be allowed to practice medicine. Your in my prayers.  PATTY61 Tue, 22 Apr 2008 00:00:00 GMT Hi, PATTY61,I'm sorry to hear that you and your husband are going through this. I'm finding that it's not that uncommon. I think we have to find a caring and understanding doctor to help our loved ones get through this.We are not going to make the April 24th second opinion appointment because my mother’s current doctor decided to have the radiologist do several days of inpatient radiation on her back for a compressed nerve. But at least she's getting some treatment for the moment. I sent the new doctor (doing the second opinion) a note indicating that we were interested in clinical trials. Meanwhile, I’m still trying to research and find other treatment options for her. Also, I changed her health insurance so that it will begin covering her at our nearest Comprehensive Cancer hospital starting next week (the first day of the month). Please let me know if you have luck getting the second opinions. I've been trying to see if there's a way to get one from the top hospitals without unnecessarily traveling to their location (maybe doctor to doctor consultation).I hope God will be with us and guide us to the right person/place in time. bensisco Wed, 23 Apr 2008 00:00:00 GMT unfortunely all places for a second opion want us to send reports and then make an appointment. Quite a difficult feat when walking ten feet makes you breathless!!!! I guess we just have to jump through the hoops and hope that time will stay on our side.At this point i am wishing that we never started the chemo. Wondering what it will buy us in terms of time, for all the misery it causes while you are going through it. I am keeping you and your Mom in my prayers. PATTY61 Wed, 23 Apr 2008 00:00:00 GMT PATTY61,Maybe you can identify another doctor or top hospital with a comprehensive cancer center and ask your doctor to do a doctor to doctor consultation as a way to get another opinion. Or maybe find another doctor with the most experience at another local hospital to go to for a second opinion. You can usually read their credentials on their hospital's website. bensisco Thu, 24 Apr 2008 00:00:00 GMT Thank you for your reply. I will try this.This board is helpful because as we are passing through the maze of all this cancer stuff, and dealing with the crisis , we are sometimes at a complete loss as to what direction to take. And some days so exhausted from the stress that even the simplisist decision seems like a mountain to high to climb. PATTY61 Fri, 25 Apr 2008 00:00:00 GMT Hi, PATTY61,I found some information that may be helpful. Links: http://www.blochcancer.org/articles/xtrnew.asp " target="_blank" rel="nofollow">http://www.blochcancer.org/articles/xtrnew.asp http://www.nci.nih.gov/cancertopics/factsheet/Therapy/doctor http://www.cancer.gov/cancertopics/factsheet/NCI/clinical-ce " target="_blank" rel="nofollow">http://www.cancer.gov/cancertopics/factsheet/NCI/clinical-ce Getting a Second OpinionOnce you receive your doctor's opinion about the diagnosis and treatment plan, you may want to get another doctor's advice before you begin treatment. This is known as getting a second opinion. You can do this by asking another specialist to review all of the materials related to your case. A second opinion can confirm or suggest modifications to your doctor's proposed treatment plan, provide reassurance that you have explored all of your options, and answer any questions you may have. Getting a second opinion is done frequently, and most physicians welcome another doctor's views. In fact, your doctor may be able to recommend a specialist for this consultation. However, some people find it uncomfortable to request a second opinion. When discussing this issue with your doctor, it may be helpful to express satisfaction with your doctor's decision and care and to mention that you want your decision about treatment to be as thoroughly informed as possible. You may also wish to bring a family member along for support when asking for a second opinion. It is best to involve your doctor in the process of getting a second opinion, because your doctor will need to make your medical records (such as your test results and x-rays) available to the specialist. Some health care plans require a second opinion, particularly if a doctor recommends surgery. Other health care plans will pay for a second opinion if the patient requests it. If your plan does not cover a second opinion, you can still obtain one if you are willing to cover the cost. If your doctor is unable to recommend a specialist for a second opinion, or if you prefer to choose one on your own, the following resources can help: Many of the resources listed above for finding a doctor can also help you find a specialist for a consultation.The NIH Clinical Center in Bethesda, Maryland, is the research hospital for the NIH, including the NCI. Several branches of the NCI provide second opinion services. The NCI fact sheet Cancer Clinical Trials at the National Institutes of Health Clinical Center: Questions and Answers describes these NCI branches and their services, and is available at http://www.cancer.gov/cancertopics/factsheet/NCI/clinical-ce " target="_blank" rel="nofollow">http://www.cancer.gov/cancertopics/factsheet/NCI/clinical-ce on the Internet.The R. A. Bloch Cancer Foundation, Inc., can refer cancer patients to institutions that are willing to provide multidisciplinary second opinions. A list of these institutions is available at http://www.blochcancer.org/articles/xtrnew.asp " target="_blank" rel="nofollow">http://www.blochcancer.org/articles/xtrnew.asp on the Internet. You can also contact the R. A. Bloch Cancer Foundation, Inc., by telephone at 816–854–5050 or 1–800–433–0464.  bensisco Fri, 25 Apr 2008 00:00:00 GMT Sorry, I guess the website doesn't like the links. I'll try again. http://www.blochcancer.org/articles/xtrnew.asp the end of the above link is /xtrnew.asphttp://www.nci.nih.gov/cancertopics/factsheet/Therapy/doctor the end of the above link is /doctor-facilityhttp://www.cancer.gov/cancertopics/factsheet/NCI/clinical-ce the end of the above link is /clinical-center bensisco Fri, 25 Apr 2008 00:00:00 GMT Thank you so much for this information. Each day with this dr.that we have gets worse! He FINALLY listened when I told him my husband had a fever and now he has pneumonia again which is the reason he has been so sick and so weak. Because this dr. thought he was "depressed" we have lost two weeks for treating the pneumonia and the blood clots that go with it. I feel if I do not move him to another facility that I will lose him for sure. So I will go onto the sites you have given me and see what I can find. I appreciate your help. God bless you. PATTY61 Sat, 26 Apr 2008 00:00:00 GMT