CancerCompass message board discussion started by Joanie on 3/4/2003 http://www.cancercompass.com/message-board/message/all,675,0.htm Tue, 02 Dec 2008 00:00:00 GMT Tue, 02 Dec 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ Nov. 2002 diagnosed with mets to liver and pelvic girdle. On femera for 3 mos -CA15.3 keeps elevating. Oncologist talking chemo now. Is there anyone out there who has been here? Are there any other options? Joanie Tue, 04 Mar 2003 00:00:00 GMT Hi Joan, I don't know exactly what you are wanting to know. I can tell you that I had breast cancer when I was 36 and went cancer free until August of 2000 at which time it came back in bones. I have been taking chemo since then and so far have been on 7 different kinds of chemo. I have just now made an appointment with CTCA and I am looking forward to my visit on the 25th. Tell me what you want to know. I have much experience. Judy F. Thu, 06 Mar 2003 00:00:00 GMT Hi Judy. Thanks for writing. I guess I wanted to know if there was anyone out there with my dx and what they did and how they are doing. I have heard from several different people tonight. We went to the onc today. The markers were elevated on 14 points 142 to 156. He felt that was not enough to jump to chemo now. The markers had been jumping 30 points every 30 days since Nov. So now I go back in April to see what is going on. If the level stabilizes or starts to decrease we will stay with what we are doing for awhile. I know eventually chemo will be in my future again but the longer we can put it off the better it is! I would like to hear about your CTCA visit if you have time and want to share your experience. I feel more uplifted today than I was earlier this week. It is nice to hear from courageous people like you. Good luck to you and God bless you. Joanie Thu, 06 Mar 2003 00:00:00 GMT Hi Joan, I just read your email and can't believe your markers are that high and they are not already doing chemo. Mine are only 45 but I have been going through chemo for about 2 1/2 years. I don't know if I told you that or not. I do have "Chemo Brain". So you are not going to CTCA? I am truly anxious to find out what they have to offer me. My onc says there is no cure and I will be on chemo the rest of my life. Well that is fine and dandy, as long as I am alive, but I sure would like a little quality to go with it and that is what is taking me to CTCA. I will surely let you know how things go and if you are not going there now you may want to consider it. Kepp me informed on your progress and let me know if you have any questions about the different chemo's and their side effects. God Bless you as well. I will keep you in my prayers. Judy F. Fri, 07 Mar 2003 00:00:00 GMT Hi Judy! The norms for the CA15.3 are 0-30. When I was re-dx in Nov.02 it was already 68. The CT does not show any new growth though. I look forward to hearing of your visit and treatment at CTCA. Good luck! Joanie Fri, 07 Mar 2003 00:00:00 GMT I have recurrent breast cancer met. to bones and liver. My CA marker was elevated to 154 and I have not started on chemo yet. I am taking Arimidex to see if the markers start going down. I am seeking a second opinion right now, but my insurance won't allow CCTA, so I'm hoping to go to Barnes Hospital in St. Louis (Siteman Cancer Institute). I'm sorry to get to know you based on our illness, but I think we might be able to share information on our treatment. I'll say a prayer for all of us going through cancer treatment. Betty A. Tue, 11 Mar 2003 00:00:00 GMT Hi Betty! I go to Siteman Cancer Center at Barnes. Michael Naughton is my oncologist. He is about 36 and a very kind, compassionite MD. My previous oncologist left St. Louis. He is in her group. I loved her - Joann Mortimer - she recommended him. Our markers are running neck and neck - I am 152 as of March. I am on femera. What is Arimidex? Where do you live? I live in Alton, Il. right across the river from St. Louis. I am 59 yrs old. I feel good - no real symptoms. I get tired but that could just be old age! Do you have an appointment yet? I go back to Dr. Naughton 4/3 at 3:30 pm. Please lets keep in touch. My husband has been wanting me to go to CTCA but I am satisfied with Barnes. I have not sought a second opinion. I was pleased with the care I received the last go round so I thought I would just stay with it. Thanks for the prayers and I will keep you in mine as well. Let me know how you are feeling. Take care. Joanie Tue, 11 Mar 2003 00:00:00 GMT Joan: I live in central Illinois in a town called Charleston (about 50 miles south of Champaign). I know where Alton is. I have been there on the boat. I am 53 years old. I had my first cancer at age 49. If it hadn't been for the CA marker being elevated, I did not present with met. cancer. It is in both ribs, both femurs, and in my pelvic as well as 7 lesion in the liver. Arimidex is a drug sort of like Tamoxifen. It's supposed to help new ones from developing. I am also getting a once per month infusion of Zometa, which is supposed to help with the bone cancer. I have had only one infusion so far. I, too, am feeling good. I do get tired, but I've felt that way since my first cancer. Do you have a port for infusions yet? I have terrible veins even for blood testing so I'm supposed to have a port put in on 3/17/03. My next infusion of Zometa is on the 28th. I have requested a second opinion because my oncologist here and the hospital have no experience in any of the liver treatments first-hand. If a doctor does not do these treatments they are relying on what they know and have read about in the textbooks. I want to hear from a doctor who has been performing these types of treatment that they will or will not work for me. Doctors who perform these treatments are on the leading edge and may know more than the recent journals/books on the subject and I'd like to be a part of that treatment for aggressively attacking this cancer. I was pleased with the care I got when this came up, but I just want to make sure nobody missed anything, etc. I do have problems sleeping at night. Do you? I wake up between 3-4 a.m. and can't get back to sleep. I belong to a support group here locally for breast cancer survivors, but no one has been in the situation that I'm in. There is one woman who has met. lung cancer but no one with met. bone and liver or liver only. I must go to a doctor in Springfield, IL first before I can be sent to Siteman. I'm not sure what doctor I will see there, but since you've been to Siteman already, do they treat the whole person (nutrition, emotional, as well as chemo)??? Up here, we have no other treatment except medical.... I don't know if they'll send me to a liver specialist or what? I do know they want to do a liver biopsy to make sure it is met. cancer, not a second primary cancer. Did you have a biopsy done? Let me know how you are doing and what treatment plan they have for you. Do you work? I retired from the university after 30 years in October 2002 at age 52. Betty A. Wed, 12 Mar 2003 00:00:00 GMT Hi Betty, My name is Tracy Nielsen, and I live in Palatine, IL. It has been a few months since your message, so I am not sure if you will get this. My mom is 52 years old and was diagnosed with breast cancer in her liver in December 2002. She had breast cancer previously (about 2 yrs. ago), and she had a mastectomy. They biopsied lymph nodes, and said that she was cancer free. However, the cancer metastasized to her liver, and docs say that it has been there for a few years. Her doctor has put her on Arimidex only. He has not been very receptive when it comes to talking about other kinds of treatment. He just keeps saying that the pill (Arimidex) is doing well for her (preventing growth of the tumors in her liver, of which there are approx 5-7. I don't know what to do. I feel very lost, and my mom is being very passive about the whole thing. I just want her to get the best care possible, and there are so many new treatments. HELP! Maybe you can offer some advice or insight. I hope that you are doing well. God Bless you; you will be in my prayers. Tracy N. Thu, 12 Jun 2003 00:00:00 GMT Tracy, We are neighbors in Illinois. I live in Charleston (about an hour south of Champaign-Urbana where Univ. of IL is). Your mother's met. breast cancer sounds similar to mine. I am doing fine. I am taking Arimidex as well and a monthly infusion of Zometa because I have bone mets as well. My liver has 6 lesions all under 3 centimeters. I did seek out a second opinion from a specialist to make sure I was getting the appropriate treatment. I was told my course of treatment is normal, except that some doctors would go ahead and give chemo drugs on top of everything else. That's a matter of choice. I have never been symptomatic of the cancer nor has the lesions on the liver changed any in six months; therefore, my doctor and I discussed waiting to start chemo until I become symptomatic. Chemo is very very hard on your body, so my ideal is to have quality of life. It never hurts to seek a second opinion so you have piece of mind but what it boils down to is it is your mom's choice and if she understands this disease there is never a cure now, only living with and accepting it and doing as best as we can with cancer in our daily lives. It's very hard to deal with not doing anything, but Arimidex helps and I am sure they are monitoring her tumor markers to see if they are going down, up, or staying the same. Your doctor should be comfortable in discussing the other options, even if they wouldn't work for her he should be able to tell you why they won't work. I did all the research and pretty much knew why I thought they wouldn't work, but I did seek a second opinion. If your mom doesn't feel comfortable with her oncologist, she should seek out a second opinion or change oncologists. Cancer Treatment Centers of America has a place up by Chicago -- I don't know about what kind of insurance they take but check it out. They were good working with me even though my insurance would not send me there and I am only 53, so I don't qualify for Medicare. Let me know how your mom is doing! Betty A. Fri, 13 Jun 2003 00:00:00 GMT Hi Betty, Thanks for your reply. I appreciate it. How long ago were you diagnosed? This is still pretty new to us. My mom also had a second opinion at Froedert (in Milwaukee, WI - my parents live in Kenosha, WI), and that doctor strongly suggested chemo. My mom instead chose to continue to go to the oncologist closer to where they live, and not to undergo chemo for right now. I think her main objective is also to have the highest quality of life possible, and I think that in her opinion, the cost of the chemo would outweigh the benefit. I just wish that her current doctor would offer her other options. I feel like he thinks his way is the only way. How often do you go to the doctor? He has my mom come approx every 2 months. I also have kind of dumb question - I don't know what "tumor markers" are. I haven't heard this phrase yet. Last time I went with my mom to the oncologist (April 16), I asked how many tumors there were exactly, and he said, I don't know; I didn't count them this time!!!!! I couldn't believe it. He knew that there were somewhere between 5-8. I am not sure of the size of the biggest one. Do you have any pain in your body? My mom often complains of her side hurting. A nurse told me that it was common to have this kind of pain with liver cancer. Also, do you ever get sick? My mom sometimes gets very ill with flu-like symptoms (vomiting, nausea). Her doctor doesn't seem to believe that it's related to the cancer. I don't know what to think. I just worry about her. I am 24 years old, about to get married next year, and my mom is my best friend in the whole world. I love her so much and just want the best for her. I wish I could send her to the best doctor in the world. Anyway, thanks again for listening. Please keep in touch and good luck to you. It sounds as if you have a wonderful spirit. I admire that. Take care and God Bless. Thanks, Tracy Tracy N. Fri, 13 Jun 2003 00:00:00 GMT Tracy, My original breast cancer was in Jan. 2000, followed by a mastectomy on Valentine's Day in 2000 and four rounds of chemotherapy and 32 sessions of radiation. I was just diagnosed in Jan. 2003 with mets to the liver and bones. I had no symptoms; I had a routine blood test in which my oncologist tested for tumor markers and it was greatly elevated. From that I had a CT scan, bone scan, and then later a MRI which showed the six lesions of varying size. Sometimes on a CT scan they can't see them and that was the case for me; he ordered the MRI just to make sure and low and behold there they were. Tumor markers are what an oncologist looks for 'indications' that cancer might be in the body and there are many different tumor markers (one for breast cancer, one for pancreas, etc.). When they are elevated, it alerts them to look on scans for cancer. They monitor after diagnosis to see if the medicines/treatments are working or not. Such as Arimidex...normal tumor markers for me is supposed to be 40 and mine were 169.... they are dropping each month right now. Basically when you have met. breast cancer, it is never going to go away. It cannot be cured. I don't want to be negative, but that is true. It cannot be cured. We have treatments that can help, but your mom, like myself and many others, must live with the cancer daily for the rest of our lives. That is why quality of life is so important. The difference in having chemo or choosing not to is her decision as long as she knows the chances of delaying chemo will bring. I have asked all the questions you are asking. You can have pain in the right quadrant. I do not even have pain there yet. I have a cousin who has an 8 cm. liver breast cancer met. and she is undergoing chemo because of the size of the tumor and she is symptomatic (having pain). Nausea and vomiting is not a symptom either. I can't remember if I've answered all your questions or not, but please feel free to contact me at any time with any questions. I am not having any symptoms at this time, nor have I with my liver mets. I did, however, put a hairline crack in my pelvic a couple of months ago riding on a riding lawnmower and had to undergo radiation to my pelvic, but I'm doing great now. I am getting ready to go on vacation for two weeks now. We are driving over 3,200 miles out west. Hope your mother is doing well. Betty Betty A. Fri, 13 Jun 2003 00:00:00 GMT Hi Judy, Can you please shed some light on your experience at CTCA? My mother was diagnosed on Sept 22,2003 with Breast Cancer, mets to liver and bones. She's currently doing Chemo (Andriamycin & Cytoxin). We have an appointment in Tulsa, OK to visit the CTCA there. What is your condition now? What are you taking? Please, please, can you please give us some more information? Thank you, Dalila in Texas Dalila V. Tue, 07 Oct 2003 00:00:00 GMT hi judy. I hope you are doing well. my daughter has breast cancer stage 4 and has mets to the bone and in the pleura around her lungs. she is going on a regimin of navelbin.she tried taxol and xeloda but they didn,t work. i pray that this drug works.what treatments did you take? mary o. Fri, 10 Oct 2003 00:00:00 GMT Hi, My cousin has breast cancer and now three years later they think its in her liver. How are you doing and do you have any advice? Thanks Heart Fri, 06 Oct 2006 00:00:00 GMT