rowena32
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Harmony, your numbers are great. Wish I could say the same for mine. The last CA-19-9 test showed my cancer marker to be at 6500. After chemo and radiation, it went down to 1575 and then the next month, it jumped to 4078 and then last week it jumped, again, and is the highest it has ever been, 6500.
The CEA went from 4.6 to 5.3. Have you had a CA 19-9 test and what were your numbers?
I had gemzar for 6 weeks along with radiation and they did not shrink the tumors but it kept them from growing at that time.
Is this your first time for chemo?Has anyone had Brachytherapy? This is a treatment using radiation directly to the cancer. I have had one round of chemo and radiation and my oncologist has referred me to Dr. Demanes who does this therapy. He is at UCLA.
Hi,
I was diagnosed with bile duct cancer in July 09 and at that time my CA-19 count was at 2000. During chemo it went up to 5400 but then two months after chemo it came down to 1575, only a month later it was up to 4074 and then yesterday it was up to 6574. They did not start chemo, again, last month because my CT scan showed no change from the CT scan of two months earlier. Can anyone give me some information as to why my CA-19 test is rising and it is not showing up on the scan? I am really worried.
My oncologist suggested that when I start chemo, again, that I have a combination of gemzar and carbo; I don’t think I have seen this combination mentioned. I am wondering if I might have it wrong. I would love any information anyone can give me.I noticed it has been over 6 months since anyone has posted on this site but I think it has very worthwhile information. I would like to add UCSF Medical Center for those who are in California. I called for an appointment with Dr. Venook but since I could not get in to see him for two weeks, I made an appointment with his “understudy”. She take all of his “overflow” patients.
I had an appointment with Dr. Robin Kelley, oncologist. I went to her as a second opinion after my first round of chemo and radiation. But she will be my doctor when I have to start chemo, again.Kristin, I am so happy for you. Last July I was told I had six months for it was incurable and there was no remission for it. A doctor put in a stent in the bile duct and I have had chemo (gemzar) and radiation. Since the treatments, the CT scan showed no change. My CA-19 started coming down until last month and it went from 1525 back up to 4078. After ordering a CT scan, the doctor decided to hold off of more chemo for now since there was no change in the CT scan. I feel good but I have lost a lot of weight. I would like to ask Mary’s son if his mother’s CA-19 test ever got in the thousands? I am going to mention to my doctor about Tarceva. She mentioned that if and when I have to start chemo, again, she would do a combination of genzar and carbo. It makes me feel good to hear all the good news. Congratulations to both Kristin and Mary.
Wow! It crossed my mind when I was diagnosed with cc, could it have been linked to taking Lipitor for so many years and then because of leg cramps, I changed last year to Simivastatin. I was off of Lipitor for a couple of months but my cholesterol went back up so the doctor put me on Simivastation. Strokes run in my family. Last July, when I was diagnosed with bile duct cancer, I stopped taking all medication plus vitamins. I have started taking vitamins along with some herbs the last few months. i am more concerned about the cancer than I am the cholesterol, but I have wondered if there might be a connection taking the Lipitor all those years.
Hi, Irene,
Like you, I haven’t posted for awhile but I have been keeping up on the discussions. I was diagnosed in July, 09 with bile duct cancer and had a stent put it to open the duct. I finished my first round of Chemo and radiation the first of November. With the help of this board, I looked for a doctor who I thought had more experience with this cancer. I have consulted with others and each have told me that they would take a break and watch to see what happens. I have had a blood test every month and the CA-19 count went down some each month, except this time. It jumped from 1525 to 4074. I will talk to my doctor, hopefully, Monday, and she will order a CT scan and I will probably be back on chemo before the end of the month. I have had all the radiation I can have, so now it will be up to the chemo to keep it from growing. I know chemo will not cure it, but if it will keep it from growing, I will try it for awhile. It was so nice not having any treatments for four months, so I can understand Irenea’s thinking. But when my blood test came back this time, I know I have to try something to stop it if I can. I know you will make the right decision for you. I don’t know what PDT, so Gavin could you tell me.
RowenaThank you, Kristin. I will start drinking the two drinks a day. I have been on Emerald Balance for a month and then I have just purchased Greens First for it had more milk thistle (75 mg) in it. They taste pretty good. I haven’t seen Macro Greens around here but I will look for it. I have just purchased some turmeric and will use it daily. I asked the ND about Essaic tea and she said for me to stick with the greeen tea for now.
Best wishes to you all.
RowenaThank you , All, for your best wishes and encouragement. Lainy, you are right, the book Anti-Cancer is a great book. I bought it a few months ago and skimmed through it, but now that I have more time, I have been taking a second look at it. I am going to follow a diet of the foods that he recommends. Marions, I was reading on another site and ran across Kristin’s post on the supplements. I noticed that she is taking milk thistle which I have read is good for liver cancer, and she is having a green drink every morning. I am having a green drink every morning that has milk thistle in it but maybe I should take more of it. The ND I went to told me to have two green drinks a day but I am wondering if that would be too much, so I am still just having the one a day for now. I will use the search function to find more.
Everyone has been so helpful. As I said before and I’ll say it, again. I am so grateful that I found this site.
I am wishing you each, the best.
RowenaHi, All,
I went to UCSF and met with a very nice young doctor who has just gotten to be a MD. She worked under Dr. Venook and has been doing her fellowship at UCSF in the Gastrointestinal Oncology Department. Bile Duct cancer was not new to her. She wanted to take my scans and records to the cancer board but since Monday was a holiday, it was two weeks before they would meet, again. She wanted to make sure that surgery was not an option for me. It is not, so the next treatment would be more chemo. Because my last blood test was some better ( CA-19) is still very high, but it had come down and the CT scan showed no growth (and no shrinkage) so she thought we should wait another month or two before another CT scan unless I develop new symptoms or the next blood test looks worse. So, right now my treatments are on hold. Dr. Lenz’s office, also, gave me an appointment but it was not until the last of February, so I took the first one I could. Since UCSF is closer to where I live, I have decided to go there and not keep the USC appointment. I am pleased with Dr. Kelley and I appreciate that she returns my calls. I went to see a Natural Health Care doctor (ND), hoping that she can help. The oncologists that I had been seeing, said to eat anything and everything, but I want to see if diet may help. I have given up desserts and try to watch my sugar, but would like to know if there are vitamins that I should, also, be taking. When I was diagnosed with cancer, I stopped all supplements not knowing which ones might help or hurt. Without all of your encouragement and knowlege, I would not have found UCSF Gastrointestianal Dept.. Have any of you dealt with alternative teatment?
Best wishes to you.Since I was last on this board, I have called Dr. Venook’s office and Dr. Lenz’s office for appointments. I thought I would take the first one I could get. I got an appointment with a new doctor that takes Dr. Venook’s “over-flow” with the understanding that I could see Dr. Venook later if I was not satisfied. I saw Dr. Robin Kelley who had just finished four years doing a fellowship at UCSF and was offered a residency. Even though, she does not have the experience, she is in the right department which only sees patients with gastrointestional cancer. For now, I am on what you might call “hold”. Hold until my next blood test or until I have some unforeseen symptoms. At that time, I will have another CT scan, and if the cancer has grown, then it will be more chemo. I went to see a Natural Health Care doctor (ND). I am going to see if she can help me naturaly with vitamins and diet. Are any of you on a special diet? I am willing to try anything that would keep the cancer from growing.
Marion,
I think I must have gotten my notes crossed. It looks like I conacted Dr. Lenz about stem cell transplant. It was when I was trying to find another treatment besides chemo and radiation and before I found this site. I have learned so much from all of you. I am sorry I did not know about this website months ago.Lisa,
Good news that the doctor put in a stent that will last longer than three months. Now, we will be waiting to hear more good news from you on the 21st.
Best wishes,
RowenaMarions, Raye, and Gavin,
Thank you for your support. This morning, I got on the phone and called UCSF and finally got to speak to Robert, Dr. Venook’s coordinator. The first appointment available to see Dr. Venook would be Feb. 1, but I could get an appointment with the doctor who sees his “over-flow” patients on Friday.
She has been working with Dr. Venook for two years. I made the appointment with the understanding I could see Dr. Venook on Feb. 1st, if I still wanted to. I just didn’t want to wait that long to see someone. I got a call from Dr. Lenz’s office but I was not home when they called. San Francisco is about a three hour drive from home and USC would be about five hours+. I faxed my reports last week to Dr. Venook but for some reason the blood tests were not sent so I faxed those today. I did not have any tests done at Stanford, but I did call and asked when they were sending me their findings which I had requested on 12/17/09. They are suppose to be in the mail. I do have a letter from the doctor I saw there saying that she would recommend a round of Gemzar and Cisplatin. I will pick up the scans on the CDs tomorrow, for they requested them on Di-Com format, and the ones that I have are on a different format. These I will take with me on Friday. So, if they say that surgery is out and that chemo is my only option, I have made up my mind not to look further at this time, but go with that. Doesn’t mean that I am giving up, but to put my energy into fighting it with the means that is available to me.
I will let you know what I find out. You all have been so helpful.
RowenaMarions
I made several calls today and found that Stanford had not returned my slides to Monterey and they would be mailing me my records in 5 days. I requested these on the 17th of Dec. I made a call to Dr. Venook’s office to see when I might be scheduled for an appointment. They took the message but no one called me back. I, also, called Dr. Lenz’s office about making an appointment and talked to Lee and he was to call me back. I am trying to keep from getting stressed but time is passing and I need to make a change soon. I can really feel some change in my liver. It was a week ago today that I called Dr. Venook’s office and I still do not have an appointment.
I will call both Dr. Venook’s office and Dr. Lenz’s office again tomorrow and see if I can get someone to help me. I don’t know why it takes so long for them to return my calls. Hopefully, I can fax my records to Dr. Lenz tomorrow and get in to see him. I wonder which one is better. Dr. Venook is closer to where I live, so that is why I called him first. After reading all the good things about Dr. Lenz, I am wondering if I made the right choice. I can always go back to my oncologist but he just has not had the experience with the bile duct cancer.
