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La fundación de colangiocarcinoma (CCF) ahora ofrece servicios de traducción en Español. Por favor publique sus preguntas en Español y un intérprete le va responder.
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Posts found: 1 to 25 of 26
My mom goes to her local ONC on Thurs. also. We don't get as nervous about that one as we used to. But when we have to go to Houston for her three month check up, I feel nauseated the entire week before! Good luck and God bless to everyone waiting for results. It is definately gut wrenching.
It's been a while since I've written, but I read posts whenever I can. My mom was diagnosed with inoperable CC a year ago this month. She started with a 12cm intrahepatic tumor and now she's down to about 4cm. She went for her 3mo checkup and I THINK we got good news. Her scan showed no change in the tumor this time, but the part of the liver that has the tumor is shrinking up and dying. The good news is, the other half of her liver is regenerating, and is healthy and tumor free. Her oncologist at MD Anderson said he didn't really know what to make of this since she's been on chemo for a year. He took her off chemo untill Dec. to see what her liver will do without the added stress. Has anyone had any experience with this?
My mom has been going to MD Anderson every 2 months since Oct. 08. She also sees Dr. Javle. Our wxperience with them has been wonderful. We are from Amarillo, TX, so she sees an Onc. here also, but MDA prescribes and oversees all the treatments. Dr. Javle was the only Dr. that gave us any hope at all. The Onc. mom saw before we went to Houston basically told her to just go home and die! Now, seven months later, her tumor is shrinking, and she still feels pretty good in spite of the chemo. She will go back to MDA next month to recheck her scans and see if she's ready for radiation. Cross your fingers for her!
Barbara, you're so right about cancer being a business. I hate to sound like a conspiracy nut, but I honestly believe if there wasn't so much money to be made in cancer treatment, there would've been a cure a long time ago.
Amy, I know what you mean about wishing for that miracle cure. I can't count the times i've wished for that since my mom's diagnosis. I still feel like it's a bad dream that I'll wake up from. Mom is interested in alternative medicine so along with her chemo, we're doing diet and supplements also. She's only had one scan since starting chemo, and she did have some tumor shrinkage. She goes back for another scan this month, so we're praying and keeping everything crossed that we get some more good news!
My prayers and thoughts are with ya'll.
Jeff, I'm sorry to hear you got the same response. It is so sad that our health care system is all about the money. Some times I think that the countries that have a national healthcare system may have the right idea, but I'm sure there are drawbacks with that also.
I hope you're doing well. I read all of your posts and think of you often.
Keep on taking it to the limit, one more time!!
When my Mom was first diagnosed, I called CTCA. They were extremely optimistic on the phone about what kind of treatments they could do. We were really excited and ready to go, we were just waiting on a call as to when her appt. would be.
Two weeks later, after I had left several messages with our "case worker", we were told her insurance would not cover treatment at thier facility. We were basically told "too bad" and not offered any other suggestions. At the time, we knew nothing about what to do or where to go next, so we were extremely upset and dissapointed. We had put all of our eggs in one basket.
Her insurance told us the reason they wouldn't cover treatment there is because they charge 300% more for traditional treatments than the major cancer centers. Your experience may be different, and I may feel differently if we had gotten in the doors. I just have sour feelings because they were very indifferent after finding out about her insurance at a time when we were all so emotioally fragile.
Thank you all so much for your info. I know this is a terrible topic, but I have one of those minds that have to know the why and how of everything. I am an LPN but haven't practiced in a while. I was always going to go back to school to get my RN, just haven't done it yet. I've been teaching Kindergarten for two years so who knows if I ever will. I know just enough about medicine to want to have more understanding, and to scare myself!
Our Dr. in Houston told us that this is a very slow growing cancer which in turn makes it very slow to respond to chemo. Are there different types of CC? Some that grow slow and some that grow fast, or do they all eventually start spreading faster? Since chemo causes a compromised immune system, and radiation causes liver damage, which seem to be the two fatal complications, then maybe we should have opted for no treatment, if this is indeed a slow growing cancer. I don't know, there are too many questions and not enough answers. It is all VERY frustating.
I have read in several alternative medicine books that tumors do not kill people. As long as the tumor does not grow, met. or block the flow of essential fluids, people can live forever with a tumor. As I've said before, my Mom has a 10cm tumor that is not blocking anything at this time. It is wrapped around the portal vein, but not blocking it or causing any symptoms. I guess my question is, what actually causes death in a cancer patient. I know no one is the same, but I don't understand why the Drs. are so grim about mom if the tumor is not actually causing problems that would kill her. I know this is a morbid topic, but I just want the honest truth about her condition. We've heard everything from 3-6 months to years. Do the cancer treatments themselves cause death? Is it liver failure? I just don't understand and I want to. How can someone feel healthy and have no symptoms only to be gone weeks later. It just does not make sense to me.
My heart aches for you. I wish there were words that could make the hurt go away, or even lessen a little bit. All I can say is I'm so sorry for your loss, and my prayers are with you and your family.
I know what you mean about feeling selfish. I think my mom is handleing all of this emotionally better than I am. I know that everyday she is here and feeling good is a huge blessing, but sometimes it's hard to keep positive thoughts. You always think you're a big grown up girl untill your MOMMY gets sick! I'm a grown woman with kids of my own, but I guess there is always that little girl inside that just wants her momma. She's always been so strong, it just never occured to me that one day she might not be here, especially not this soon. My prayers and thoughts are with you and your mom.
I was just wondering if anyone knows anything about, or has had any experience with Oasis of Hope in Mexico? My Mom is interested in alternative therapies. I have read several books that reccomend them for alternative treatments, but don't know anyone with first hand experience.
She is taking several supplements and following the diet in Patrick Quillians "Beating Cancer With Nutrition". After 3 mo. of chemo and supplements she has had a 1.5cm reduction in tumor size, but she is begining to have a hard time tolerating the chemo. (terrible mouth sores and Hand-foot syndrome)
She is interested in trying IV vitamin C or maybe the B17 treatment. Oasis of Hope is supposed to have a lot of experience with these treatments, along with many other immune system building treatments. Any insight would be appreciated.
My mom is being treated with Gem/Xeloda, on 2 weeks and off 1. She took 1500mg twice a day untill third round when she developed hand/foot syndrome. She was off the Xeloda for almost 3 weeks. When we went to MD Anderson for her 3 month check up, the scans showed about a 1.5cm shrinkage to her largest tumor. The Dr. was excited and wanted to put her back on the Xeloda, but reduce the dosage to 1000mg twice a day. She took it for 1 week and developed large mouth ulcers, and a very swollen tongue and lips. Her local onc. told her to stop the Xeloda immediately. We haven't heard from her Houston Dr. yet. Now I'm worried and scared. There doesn't seem to be a lot of chemo options and this was working. I hate for her to be off and give the tumor a break, but I know she can't live like this either. We're in between a rock and a hard place. I knew this was going to be a hard journey, but it is still dissapionting. Does anyone have any insight?
Thank you all so much for your prayers and kind words. It means more to me than I can say. We did get good news. Her largest tumor shrank about 1.5cm on all sides. The smaller ones did not shrink, but they didn't grow or spread either. We definately had some prayers answered. She will stay on the same regimine of Gem/Xeloda, and he will check her scans agian in March.
We are leaving this morning for Houston so MD Anderson can check my mom's progress. She has completed 3 rounds of gemzar/xeloda and they are going to redo scans when we get there. If everyone who prays would please keep her in your prayers that we get good news I would really appreciate it. She started with a 10x9cm tumor with several small satelite tumors. Ofcourse I am hoping and praying for shrinkage, but I would be happy with no growth. Thank you all in advance for your prayers, and I will update when we get back!
I just wanted to thank you for your posts. They have made my heart ache and lifted my spirits at the same time. My mom was diagnosed in Oct. 08, and I'm having a really hard time dealing with it. You put into words alot of my feelings. Your mom sounds like mine with her faith and optimism. I hope they both keep it. I'm supposed to be the one keeping my mom's spirits up, but she always lifts my spirits and gives me faith. You and your family are in my prayers.
ljg, Thank you so much for your words of encouragement. You're right, all we can do is take it one day at a time and enjoy the time we have to the fullest! My prayers go out to you and your family. My mom and I will go back to Houston next week so they can check her scans. She just completed her third round of chemo. She did have to stop taking the Xeloda on her last week because she developed hand/foot syndrome. I would really appreciate it if ya'll would send out a prayer that we get good news next week. I am praying for all of you that have lost loved ones to this disease and for all of you who are still fighting the fight!! May God bless all of you and give you strength. I'm hoping for a marvelous new treatment for CC in 2009!
You might also try the Dr. Phil show. He and Robin are always trying to bring about awarness. Atleast it would be another venue.
So glad to hear that you're doing well. My Mom is being treated by Dr. Javle also. We really like him so far. We will go back to Houston next week to check her scan to see if there has been any shrinkage. We're praying really hard! She had to stop the Xeloda a week ago because she developed hand/foot syndrome. I hope that stopping that won't disrupt anything.
I am so happy to hear of your success. My Mom was told her tumor is inoperable at this time, but we're hoping that we will get a miracle and her tumor will shrink enough for her to be a surgical candidate. Do you mind me asking who did your surgery. I'm trying to stay one step ahead and look for good surgoens just in case.
When my mom was seen at MD Anderson for cc, they sent her for genetic counceling. My maternal grandmother had pre-cancerous polyps in her colon, and Her mother died of colon cancer. They told us that the family may have Lynch Syndrome. This gene mutation causes colon, liver, cc, and ovarian cancers. They are testing her biopsy slides for this. We should know more when she goes back to Houston in January.
She had the tube removed two days after they put it in. As for them charging for the chest tube, I'm sure they are going to try. They told us that there is a 1% chance of this happening, so I'm sure they've covered thier butts. Ofcourse they didn't tell us that untill after her lung collapsed. Yes, I have noticed that nothing is thier fault! The surgeon blamed it on mom being dehydrated and he said its hard to put a chemo port in on "bigger ladies." My mom is 5'10" and weighs 160lbs! What a jerk. Thank ya'll for all the good thoghts. It really does help to gripe to people that understand!
Thank you ladies for your words of encouragement. Know that my thoughts and prayers are with you all. I did have a couple of questions and maybe a gripe or two . Mom went in the day before Thanksgiving to have her chemo port put in. She was telling them from the moment she woke up that she couldn't get a deep breath, but they sent her home anyway. Thanksgiving morning we had to go to the ER where they found out her lung had collapsed because it was punctured during the surgery. She then had to have a chest tube which she said hurt more than anything she's ever had done and she's a pretty tough lady. Now, a couple of weeks later, it still is uncomfortable on that side. Is that normal? Has anyone ever had this experience? I know in the grand scheme of things this was not a big deal, It was just a swift kick in an already sore butt!
Lainy, Thanks so much for your reply. I am trying so hard to be strong and positive, but I'm still so scared and sad. I still feel like this is a bad dream and I'll wake up at any minute! My mom is my best friend and I can't imagine life without her. My husband is not close with his family, so he's trying to be supportive, but he doesn't really understand how devastated I am. All I know to do is be as strong as I can for her. I'm so glad I found this site. I don't want her to know how scared I am.
I just found this site this morning. I posted on another thread earlier, but realized I should probably go to the intro thread first. My 56 yo mom was Dx with CC in late Oct. They found the tumor while doing a CT scan because she was having slight abdominal pain and had lost about 25 lbs. in a couple of months. She has a 10 cm tumor in the middle of her two lobes so we were told surgery is not and probably will not ever be an option. The first onc we saw told her she had 3-6 mo. and needed to "get her affairs in order." He said that he could do chemo, but it would be a waste of time because it never works. We were blindsided by this. My mom has never been sick and has been in perfect health untill this. We sulked around, cried and were devastated for a couple of days when my sister and I decided we just could not live with that attitude in our Dr. so, we did research and got her into MD Anderson in Houston, Tx. They seem to be much more positive there. He started her on Xeloda 1500mg twice a day and an IV of Gem something once a week. She does this two weeks on and one week off. She will have her scans rechecked in Houston in Jan. He expects that she will do 6 rounds of this regimine and then do 6 weeks of radiation. I told mom, atleast they gave us a plan that lasts longer than the first Drs life expectancy. Has anyone had any experience with MD Anderson? So far, ours has been good, but of course I want the best for my mom. It sounds like after reading other posts that her chemo is pretty standard for this cancer. We are hopeful, but still very scared and confused. We've been told everything from no hope at all to she could live for years by taking a maintainance dose of chemo after this treatment is over. We don't know what to believe, we're just hoping and praying for the best. This is all brand new territory for us. We don't know anyone with cancer, let alone this kind! So far, she is feeling OK, but she is totally exhausted most of the time. Any advise or thoughts would be greatly appreciated!
Posts found: 1 to 25 of 26
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