CancerCompass message board discussion started by bensisco on 4/12/2008 http://www.cancercompass.com/message-board/message/all,22990,0.htm Thu, 20 Nov 2008 00:00:00 GMT Thu, 20 Nov 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ Hi, All.I’m new here, although, I sometimes read the messages here for hope and encouragement. This story is kind of long so please read it when you have time. I don’t know specifics like tumor size, etc.  My mother (58yr/olds) was diagnosed with Stage IV lung cancer on New Year’s Day 2008. She was really in pain and incoherent; so we took her to the emergency room of a small local hospital and they did a brain scan. They found multiple brain lesions and traced it back to her lung. They started whole brain radiation treatment immediately and gave her steroids for brain swelling. After 4 days she was seemingly back to normal mentally. I asked her doctors to tell us if she needed to go to one of the major cancer centers for a second opinion or for treatment. They said what she had they could handle and that she didn’t need a second opinion. They also said the plan was to give her radiation to get rid of the brain lesions and then chemo to shrink it in the lung, followed by radiation to get the rest. I asked them to let me know the second they saw anything they thought they couldn’t address and we would move her to a major cancer center. The doctors decided to give her 15 whole brain radiation treatments and then start chemo (Taxol & Carboplastin). They gave her 3 outpatient chemo treatments, one each Friday for about 2 hours each day. During the chemo treatments she lost her hair and started becoming weak. She stopped eating and drinking and had to be hospitalized two more times. Her oncologist decided to stop her chemo (early February) and give her a chance to get stronger (or so he said). Her doctors re-staged her (early February) and said that the brain tumors were eradicated (they were never clear if they were all completely gone or what) and that her lung cancer had not grown anymore. My mother had other health problems including back problems. So, she had back surgery while recovering from not eating and now she can’t really walk until her back gets better. Unfortunately, when they prepared for her back surgery they said she had a suspicious area in her spine that they were sure was also going to be cancerous. Her doctors gave her 3 radiation treatments to her back (April). Her oncologist also tried to put her on hospice. Our family asked him if he thought she was not going to make it since he was putting her on hospice. He said the original plan for further chemo was still in effect and not to worry (April 4).  He also said he was using hospice because they do a better job than home healthcare. I asked her doctor to give her something to stimulate her appetite and he seemed to only then realize that he could give her Megace (a hormone that stimulates appetite). I told my siblings I didn’t trust this doctor anymore and that we should get a second opinion as I originally suggested. But it was not as easy as I had hoped. The places I called all tried to discourage me from interrupting her treatment. We live in Alabama and although I had called M D Anderson and even the Cancer Treatment Centers, trying the University of Alabama (UAB) seems to be the quickest option and they are nationally ranked. Anyway, on Friday, 4/11/08 her oncologist talked with me privately and indicated that her cancer had spread far more than he realized and that she had more cancer in her spine than he originally realized. He also said she had cancer in her belly (I guess her stomach). He said the radiation on her back hadn’t work and that the chemo hadn’t helped so he was not going to give her anymore treatments and wanted us to put her on hospice so she could be more comfortable. I asked him about trying other chemo drugs like Avastin or Tarceva, but he said he thought it would make her sicker and not really help her. He continued to tell my mother that she was doing well and was going to start her chemo as soon as she gets stronger (to keep her from getting depressed and giving up on eating again).  I walked back to my mother’s hospital room and sat with her. She is eating pretty well now and thanked me for suggesting the doctor give her the Megace. She was also talking about wanting to get better and how the doctor told her she was doing well. I tried not to start crying and let her know the truth just yet. She’s still bedridden from the back surgery and there’s no reason to have her stuck in bed and severely depressed. I’m making an appointment with UAB’s Kirklin cancer center to get her a second opinion. I read some pretty amazing stories here and pray that it’s not too late for my mother. She has Medicare and Medicaid administered through one of the HMO advantage plans which causes a delay in going outside of the state (when you have Medicaid you can switch plans on the first of each month if you need to). So, she could always switch to original Medicare and go almost anywhere if it was worth it.  Everyday it’s bad news and she’s so young for all of this. I was hoping she would be one of the success stories (like you see on the commercials). If anyone knows of the best cancer treatment center/hospital for metastasis cancer I would appreciate any advice. bensisco Sat, 12 Apr 2008 00:00:00 GMT Hi, I am so sorry for what you are going through, I always heard of cancer treatment of america is good . I live by Chicago and we have wonderful doctors out here.. My father in law starts chemo on Monday for tumors in the brain from his lung cancer. I know its not going to be good he is almost 80... I was hopeing he wouldnt do it. Now as for your mom she is to young for this and I would get a second opinion as soon as possible explain what you are going through.. Maybe get a hold of AMERICAN CANCER SOCIETY they might be able to stir you in the right direction.. I really hope and pray everything comes out ok. I will keep  your mom and you in  my prayers.. ANNOD44 Sat, 12 Apr 2008 00:00:00 GMT Thank you. I just hope we can get another doctor to restart her treatment and try something that works. Her current doctor says he doesn't think she has long and will not give her any other chemo treatments. He says she's too weak. But she is eating now and in good spirits. Also, there are a number of different types of chemo drugs including pills and a number of radiation techniques. Her current doctor only tried 3 treatments of Taxol and Carboplatin. No Avastin or Tarceva, etc. I'm going to try to set up a second opinion with the University of Alabama's Kirklin Clinic. I'd like to see if I could pay for one of the top Cancer Centers to do one as well. I'm not sure if it's hard to get one from the Cancer Treatment Centers of America, but I love their hopeful commercials. My family is not ready to give up and neither is my mother. She was so full of life just this past Christmas. She and I visited family and delivered Christmas presents together. Now she is so weak and frail. It makes life seem so cruel. bensisco Sat, 12 Apr 2008 00:00:00 GMT ANNOD44 My mom's brain tumors responded pretty well to whole brain radiation. I think your father will do fine. Make sure he eats or at least drinks something like Ensure a few hours before chemo. Make sure he doesn't stop eating if you see him losing his appetite. Remember, there may be a drug he can take for appetite stimulation like Megace if that happens.Good luck to you and your father-in-law. bensisco Sat, 12 Apr 2008 00:00:00 GMT http://www.onctalk.com/  Go to this site and paste what you wrote for the very first time explaining your moms situation, and this site will help you...its actually a doctor and he will answer your question. I already wrote and he got back to me right away.. its only on lung cancer and brain mets... and anything to do with it.. Good luck Im  am praying for your mom and you . I  hope this helps ANNOD44 Sun, 13 Apr 2008 00:00:00 GMT Thank you once again ANNOD44. The website says that forum registration is currently closed so I'm going to email him. I also found a website with a list of alternative cancer treatment centers around the United States and the World. http://www.cancure.org/directory_clinics_outside%20US.htm&nb This part of the website has brain cancer treatment options info.http://www.cancure.org/brain.htm bensisco Sun, 13 Apr 2008 00:00:00 GMT Hi, I know what you are going through.  My mother is 58 also and got diagnosed with Stage IV lung cancer on Jan. 2, 2008.  We took her to the emergency room of a small hospital because she had severe nausea and vomiting (no other symptoms prior to this).  They diagnosed her there and told us that the cancer had metastasized to her brain and spine.  We live in Los Angeles, so we had her transferred to UCLA as soon as we could. We also got a 2nd opinion at USC and they told us that we had the option of doing either Tarceva or regular Chemo.  We decided to stay at UCLA.  She is in a clinical trial that uses Tarceva nad Faslodex (an anti-estrogen injection that she gets every other week).  She is actually going for her follow up exam today so we will know the results of the treatment.  My mother says she physically feels better then she did prior to starting treatment, so we are remaining hopeful.  I would recommend that you get your mother to any research hospital where they conduct a clinical trial.  A doctor friend of ours told us that the current drugs on the market unfortunately are not a cure for lung cancer, so her best option is to be in a clinical trial where you have access to the latest drugs.  Tarceva is supposed to be very effective for non-smoking women and your mother is young like my mother which can only work in her favor.  Even though your doctor doesn't seem to think there are any more options, there are.  I've heard very positive things about MD Anderson.  If this round of Tarceva proves not to be effective for my mother, that's where we are taking her.  Best of luck to you.  dmt77 Tue, 15 Apr 2008 00:00:00 GMT Hi, dmt77,I’m glad things are sounding good for your mother. I also appreciate the encouragement. California seems to have a number of comprehensive cancer centers and lots of clinical trial research going on. April 24th is the big day for the second opinion at UAB. So, we’re hoping for some good news for a change. I figure it can’t continue to always be bad news at every turn. bensisco Tue, 15 Apr 2008 00:00:00 GMT  On 4/13/2008 bensisco wrote:Thank you once again ANNOD44. The website says that forum registration is currently closed so I'm going to email him. I also found a website with a list of alternative cancer treatment centers around the United States and the World. http://www.cancure.org/directory_clinics_outside%20US.htm&am This part of the website has brain cancer treatment options info.http://www.cancure.org/brain.htm Good morning. The Onctalk webiste moved their operation to http://www.cancergrace.org/forums/ . Dr. West who used to reply at OncTalk, now monitors these posts at Cancergrace, and will reply to you quickly from what I have seen. The "old" messages are still available to be referenced at Onctalk. I wish the best for you and yours as you face this challenge.  DougH Wed, 16 Apr 2008 00:00:00 GMT I am so happy to hear that your mother will be going to a research hospital.  I am sure they will have some nice options for you to consider.  And definitely keep her spirits up.  That is so important in fighting this thing.  My mother's doctor told her that she had a "very good" response to her treatment. I hope the same for your mother as well.  My thoughts and prayers are with you.  dmt77 Thu, 17 Apr 2008 00:00:00 GMT Thanks dmt77, I just hope her current oncologist is wrong about her prognosis. I'm desperate to find someone willing to treat her before it's too late. My heart will be forever broken if she doesn't make it. bensisco Thu, 17 Apr 2008 00:00:00 GMT