mandileigh Posted October 4, 2005 Share Posted October 4, 2005 Hello, I'm new to the board and my name is Mandi. I have been reading postings for a while now so I decided to post. My mom is 47 years old and was diagnosed with Stage IV adenocarcinoma in the right lung and lymph nodes, that spread to 4 places on her brain and one in her liver. This was a HUGE shock to my mother and my entire family. She has always been super healthy and never smoked a day in her life. She started receiving treatment the first of June. She had 12 radiation treatments for the brain lesions and was put on Tarceva. Her oncologist measures the cancer by a CEA count and chest xrays. Originally the count was 11,400 and dropped after the first month to 900. The second month dropped to 811, so he decided to add Gemzar with the Tarceva. Her count dropped once again to 400. We were all soo happy. But three weeks later it has went back to 850 and the chest xrays showed some growth. We were all very upset because she had been doing so well. He decided to switch her to Iressa for two weeks and redo the blood work. We go back this Thursday. My mom has handled the treatments pretty well so far up until the last two weeks. She's very depressed and cries all the time. It's very difficult to watch her go through this. All we know to do is to be there for her and support her. If anyone has any advice or knows anything about CEA numbers please let me know. This board has given me a lot of hope and I will continue to pray for all of you guys!! Quote Link to comment Share on other sites More sharing options...
kamataca Posted October 4, 2005 Share Posted October 4, 2005 Mandi, What a crazy ride you've been on for the past few months! I know it must be hard for you to watch you mom go through all of this. I'm sure you are doing what you can to take care of her. This is a great place to ask questions, or sit back and learn from what you read about others. I'm sorry you had to seek out this board, but it is a great, supportive place. In another post today I called it an "oasis of hope", and that is truly what it has been for me. I hope you can find some help and comfort here, too. Keep us posted on how your mom is doing. Kelly Quote Link to comment Share on other sites More sharing options...
Patkid Posted October 4, 2005 Share Posted October 4, 2005 Hi, Mandi, We are so glad you found us, but sorry that you needed to look. You have found a great place for encouragement and support. We don't know about markers.......but we look forward to getting to know you. We will include your mom in our prayer....and you, too, honey. Best Pat and Brian Quote Link to comment Share on other sites More sharing options...
Don Wood Posted October 4, 2005 Share Posted October 4, 2005 Welcome, Mandi! Glad you found the forum. Let us know how we may help you and your mom. Don Quote Link to comment Share on other sites More sharing options...
Nushka Posted October 4, 2005 Share Posted October 4, 2005 Mandi, Welcome to our family. Sorry you had to look for us but I am glad you found us. Now, as for your mother. I have read many times that the blood work numbers sometimes do NOT reflect what is actually going on with lung cancer. Your mother needs a CT/PET scan to get the entire picture. I am at a loss about the Tarceva being replaced with Iressa. From what I have read, Iressa is only available to people that have already had it and seem to be doing well with it. It has been "replaced" in many cases with Tarceva. I would look for another opinion as to what is available for your mother. Traditional chemo has not yet been tried (if I understood your mother's treatment so far) so I would want to look into that. Nina Quote Link to comment Share on other sites More sharing options...
cindi o'h Posted October 4, 2005 Share Posted October 4, 2005 Hi Mandi. So glad that you are here. And very sorry about what your Mom and your family are going through. I want to validate what Nushka (Nina) has said about the markers and the Iressa replacing the Tarceva. We aren't doctors, but we follow what is commonly known about lc and treatments. What is going on between your Mom and her onc. doesn't sound exactly right. When something doesn't sound right, it may be a wise thing, especially concerning what is at stake, to seek out another opinion. Good luck to you all. And let us know how we may be of help to you. Cindi o'h Quote Link to comment Share on other sites More sharing options...
Don M Posted October 4, 2005 Share Posted October 4, 2005 Hi Mandi: I am sorry your mom has to go though this stuff. I am surprised too about the tarceva. I thouhgt it was a second line treatment following something such as gemzar/carboplatin. I hope your mom's cancer stabilizes and that she can feel good again. Don M Quote Link to comment Share on other sites More sharing options...
Ellen B. Posted October 4, 2005 Share Posted October 4, 2005 O Mandi, this must be so hard!! We've never heard of CEO numbers and don't know what it means. Can't help you there but we'll keep your mom and you in our prayers. Ellen and Henk Quote Link to comment Share on other sites More sharing options...
ma's kid Posted October 4, 2005 Share Posted October 4, 2005 Hello, Mandi, Really glad you found us but sorry there is a need...I really don't have any answers to your questions but from what I've heard the CEA is sort of like a tumor marker and *they* keep an eye on the levels to see if there is an increase. It may be a good idea to speak with your mom's doc. I agree with the need for a PET/CT scan to see what's what. Please know that your mom is in my prayers and I know how very difficult all this is, to see someone you love hurting physically and emotionally..hang in there and please remember, we are here for you. Blessings, Mandi Libby Quote Link to comment Share on other sites More sharing options...
Fay A. Posted October 4, 2005 Share Posted October 4, 2005 Dear Mandi, I am wondering if your Mom has been evaluated at a large comprehensive and NCI designated Cancer Center? What state do you live in? We can probably find the one nearest to you. I strongly urge your Mother to have herself evaluated at such a Cancer Center. There may be treatments available at these facilities not available in your local community. CEA is a tumor marker, and it is a useful tool to measure disease status in only a very few cases of Lung Cancer. You would think that if one has Adenocarcinoma, and CEA levels that rise and fall with tumor load levels then this would be the case with all people who have Adenocarcinoma. But it doesn't work that way. I am genuinely sorry that your Mom and your family is facing this. I think the American Cancer Society and the Medical Community at large has done a huge disservice by letting the lie stand that it is only smokers and those exposed to second hand tobacco smoke who develop lung cancer. Because this just isn't true. Wishing your Mom healing and strength. And please, really look hard at going to a NCI Cancer Center for evalation. Quote Link to comment Share on other sites More sharing options...
Calintay Posted October 4, 2005 Share Posted October 4, 2005 Mandi - Welcome to the board sorry you have to be here. I have no info on the numbers. Fighting/living with this beast is a roller coaster and it sounds like your mom has a wonderful support group. Prayers being said for all of you! Quote Link to comment Share on other sites More sharing options...
bunny Posted October 4, 2005 Share Posted October 4, 2005 whoa, mandi. shock is right! I felt it, too, when my mom was first diagnosed...and even more when it came back this year! this board is incredible, please let us know how we can support you and your mom through this difficult stuff. you'll get all the hope and info here that you need, I'm sure of it. glad to hear the doc is willing to try different things. I will be thinking of you! keep us posted. xoxo amie Quote Link to comment Share on other sites More sharing options...
Kaffie Posted October 4, 2005 Share Posted October 4, 2005 Welcome Mandi, I am so sorry for what you and your family is going through, this disease stinks. There is good advice posted here, please check into it. Kathy Quote Link to comment Share on other sites More sharing options...
mandileigh Posted October 4, 2005 Author Share Posted October 4, 2005 Thank you all so much for the information. I still feel lost though. I'll try to answer some of the questions that were asked. I live in Franklin Co. Virginia and my mom is receiving treatment from Lewis-Gale Clinic in Salem, VA. I know we should have received a second opinion but we were all scared and thought she needed treatment immediately. She has had symptoms since January and went to doctor after doctor. They would tell her she had acid reflux, then maybe a hernia, her gallbladder was checked. Finally after four months they found out she had pneumonia and then everything started to unravel. The pulmonary specialist who did the biospy said we could obtain a second opinion but he was positive of the diagnosis. We felt confident in the doctors and wanted to trust their judgement. When she was diagnosed with LC they had done a biopsy of her lung tissue and a PET scan. The oncologist said because she had the brain lesions and needed radiation, he didn't want to start chemo yet. So instead he wrote her a prescription for Tarceva. This was on a Friday, and none of the pharmacies around had it. So we had to wait until Monday for it to be ordered. The Dr. had a few Iressa pills and told her to take them until the Tarceva came in. She took 4 days of Iressa and then started the Tarceva. The next month when her CEA had dropped to 900 (originally 11,400)he said the Tarceva was working and she would just stay on that and evaluate each month with bloodwork and a chest xray. The second month the count had only dropped to 811 so he started giving her Gemzar treatments. She was taking chemo, once a week for two weeks, and then off a week. She had four treatments total. (She also had to skip a treatment because of an infected toenail)After the first set of treatments her count dropped to 400. Then three weeks later it went back up to 850 and he said the chest xray showed growth. The Dr. said he wanted to try the Iressa for two weeks. So we go back Thursday. I hope maybe this is a little clearer than my first post. Anyone please feel free to send me any comments. Thanks for everyone who responded-God bless you all!! Quote Link to comment Share on other sites More sharing options...
jang Posted October 4, 2005 Share Posted October 4, 2005 Welcome Mandi. I can't help with the numbers, but I wanted to welcome you anyway. Quote Link to comment Share on other sites More sharing options...
Leslie221 Posted October 5, 2005 Share Posted October 5, 2005 (((Mandi))) Your mom and I are close in age - both too young for this! The first couple of months were the worst for me. I was terrified! I needed meds to help me sleep. I've taken Prozac for years and I'm glad I have it. Wonder if your mom could benefit from an anti-depressant to help her calm the terror and sadness? It's a great help for lots of us and can make a big difference. Anyway, please remind your mom there are many stage IV folks here (like me) who are doing fine and have good reason to hope that this disease can be kept "stable" and chronic until a real "cure" is found. Hang in there, come visit us any time for comfort and information! Leslie Quote Link to comment Share on other sites More sharing options...
lilyjohn Posted October 5, 2005 Share Posted October 5, 2005 Mandi I too want to welcome you. I hate it that you have a reason to be here but sense you do you have come to the right place. Not only will you find a lot of compasion here but a lot of knowledge as well. I don't know much about the tumor marker numbers only that they are not always acurate. I do want to second what Fay said about finding a cancer treatment center other than a small town clinic. Like you we felt very comfortable with Johnny's doctor. Too comfortable to make a change when we started having too many questions about his treatment. I just want you to know that sometimes change is good. Ask questions and get answers. If the answers aren't clear enough or you are not comfortable with them find another doctor at least for a second opinion. If that upsets her doctor then you will know that he is more interested in his ego than her care. Never forget that love, faith and hope can go a long way. Make sure she knows that she has all of those things. See too if she will talk about her feelings. That can be important and give you a clue of what you should be asking her doctor. My prayers are added to all of the others. Quote Link to comment Share on other sites More sharing options...
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