Oops, I meant to write July 2005 as to when I was first diagnosed. Haven't slept much the last few days. Thanks!
Hello, we were diagnosed at the same time. I'm sorry to hear that you may be facing a recurrence. Please try to stay positive; there are many drugs that can be tried and there is no reason to believe that you won't respond well again. As for whether you are considered platinum resistant is a hard call to make since as you say, you are on the boderline. Let us know how the scan turns out. I will keep your situation in prayer. Christa
Hello km. I also have suffered a recurrence within six months of finishing my first series of Taxol/Carboplatin. I was operated on with Stage 3C (barely missing the stage 4, my surgeon said) the first of July, 2004. My cat scans showed a small incisional hernia, and a very small piece of tumor. Finally, in Dec. 2005, my CA-125 was up to about 290. In Jan.2006, I had hernia surgery (there were five!), and "look & see" surgery- which showed more tumor than the cat scans did. So, the doctor put me on Gemzar. Gemzar chemo didn't work, so in May my oncologist started me on Taxotere/Carboplatin. After two treatments, my CA-125 went from 249 to 87! I had my third treatment today, with the sixth scheduled for around Aug.l5th. Early recurrence like you and me have had happen is tricky, for sure. But, we're not statistics, we're individuals! And, thinking positive is probably the most important thing all of us can do. I was very depressed when the doctor told me that the Gemzar hadn't worked after about 10 treatments. But, I feel so much better with the CA-125 dropping now. And, I do feel very good. My husband and I walked around a lake this week-end - about five miles, and I did well. I had my third chemo of this series today, and am feeling fine, ate a big dinner, etc. And, remember, they are constantly coming up with new medicines for all types of cancer - look at the news on cervical cancer! So, technically, I have went over a year with a recurrence before doing more chemo. My doctor and surgeon thought that perhaps the hernia was causing the CA-125 to go up. The surgeon had seen three cases of that, as there is many other causes of a rising CA-125, like inflammation, etc. But, that didn't turn out to be my case. Anyway, I'm going to try to be very positive and beat this thing once and for all, and I want you to do the same thing!!!! Write me anytime with any questions about my situation. This site and the women on here have made a huge difference for me! I love all of them! I have a friend that has survived ovarian cancer for over six years now, and is still doing very well. So, hang in there, and let all of us know about your cat scan. Hugs and prayer, MM
Dear MM: Thank you so much for your kind email. My husband and I felt so much better after reading it. How wonderful that you are feeling better and that the CA-125 is decreasing. We will keep you in our thoughts and prayers. Does the fact that my number is 198 indicate that we may have caught this in its early stages? Did you have any symptoms with the hernias or the new tumors? I am new to this site and I think it's going to help me a lot. I do believe that a positive attitude will make all the difference in the world. Thanks for your encouraging words. Take care. Kim
Hi Kim.I'm glad if I was able to help in any way. The hernia didn't bother me at all (I should say the "five" of them). It was just a little bulge above my belly button. The doctors weren't very concerned about it until my CA-125 kept rising, but the cat scan only showed a small tumor on my aeorta lymph node. (About 1/4 inch in size). It didn't grow until it showed in my scan in October. Still, the surgeon and my oncologist thought the rising CA-125 could be the hernia thing. That's why they did the surgery instead of just starting me on chemo again. They had to use pig's gut to close it. Unfortunately, the surgeon said that there is a 30% recurrence of them. BonnieR on this site told me that she has had the hernia surgery too, and she was told that these incisional hernias are because they start us on chemo so soon after our surgery, that we don't have time to properly heal. I know they started me on chemo under two weeks after my surgery, as they had to leave one fist sized tumor that was behind my spleen, and too dangerous to remove. This time, in January, they found a small tumor at the top of my small intestine. And, they found some cancer in several of the lymph glands they tested. The CA-125 marker is so different for everyone. Some people that I correspond with have markers that are always under six, and their doctors don't want them to move even one or two points. Other people have markers in the thousands, like you did, sometimes with very little tumor. When they found my cancer, I had the FOUR fist-sized tumors, and my CA-125 was only 119. They waited a month to operate because they wanted to wait for this particular oncology gynecologist/surgeon to get back from vacation. It is suppose to make a huge difference having this type of surgeon. Anyway, I never found out what my marker was before surgery.....I need to ask my doctor next time. One time I asked my oncologist about the CA-125 numbers, and he said something about the division of the cells. I didn't really understand it. But, also, some of the women have said that the doctors have told them that the CA-125 marker doesn't work for them, that it isn't a good test for them. But, my doctor likes it for me. He says I am a "slow" riser, so it could follow that I am a "slow" dropper. Anyway, that is what he said when after several chemos back in April, my marker had only dropped 10 points at one point...that was with the Gemzar. And, Kim, the only symptom I had with all of those large tumors was that at night, in bed, I felt so much urgency about urinating all night long, that sometimes I would get up 30 times. And, when I reflect back, I remember that when I would turn from side to side in bed, sometimes I would sort of feel a pulling sensation. Now, I think it was probably the tumors. I just thought it was a muscle pull type of thing. And, I thought that my feeling urgency all night was a result of stress that I had a tremendous amount of at the time. I do think that I had the cancer for years. About four or five years previous, my stomach got pretty big, but I had gained quiet a bit of weight and thought that was it. My friend whose had it about six years.....her first indication was that after a day at the beach, she and her husband went back to their motel and she couldn't breathe. She tried propping herself up with pillows, etc. They tried everything, and finally took her to the emergency room. They drained off many pints of fluid from her lungs, and the diagnosis was made. I've never had a problem with fluid at all, but it is one of the main symptoms, because my doctor told me these ovarian tumors create a fluid normally. Compared to your 2000 original number, it does sound like the 198 is pretty early. In a way, you and I are fortunate that the marker works for our doctors. Some people are ignored for months and months, and even over a year, because their marker is extremely low. I didn't mean for this to become a book. Like you, I'm very emotional about all of this. I still can't believe it's happening to me. Have you put up a personal web page. Mine is up, and you can e-mail me directly from there if you want to. I do take alot of natural supplements that are suppose to fight cancer. I can't say they help, but I can't say they don't. I'm sure the doctors didn't expect me to still be around this long when they did the original surgery - it was so bad. In fact, the tumors were mainly attached to my peritonea - the abdominal cavity lining - and it is suppose to be an even worse type of ovarian cancer. Anyway, I have a little two year old granddaughter that means the world to me, and I sure want to watch her grow up. She was only three weeks old when I was diagnosed, so you can imagine how hard it was to hold her and look at her, especially that first six months....the surgery, then the chemo. Anyway, keep up a postive attitude.....Hugs and prayers, MM
Hang in there. I recurred in 7 months, was diagnosed in Jan 2003 and still here fighting. Some woman after their second round of chemo go into remission for a longer period and some like me just get short chemo breaks. But each year there is something new to try. So never give up hope and live life to the fullest.
Prayers and hugs Bonnie
Hi MichaelaMarie, thank you for sharing your story. I just wanted to say that I totally indentify with your emotions about your grandhild. I found out our daughter was pregnant with our first grandchild shortly after my debulking surgery. I was also diagnosed at very near stage 4 and it was devastating to me knowing that there was a good possiblity that I wouldn't be around to hold my grandson. But here I am, still fighting and enjoying the little guy. I'm 52 and hope to be around for many years. I rely on my faith in God to help me get through the rollar coaster of this disease. It is so helpful to hear everyone's story, the ups and the downs because you do realize that you are not alone in this fight. My best wishes go out to you and everyone on this board.
Hi Christa. Boy, it does sound like our story is VERY similar. When were you diagnosed? Mine was late May,2004. Mine was considered peritonea ovarian. Everything I read mentioned a one year survival at best. One of my prayers was to see my 3 week old first grandchild walk. Now, she's two and running! Now, I would so love to be there for her first day of school. Thanks for writing.....take good care of yourself and your emotions. MM
I was diagnosed in July of 2005. Had the surgery and then the standard taxol/carboplatin tx over the next 18 weeks. The chemo was a very rocky experience but I got through it and was there to hold my grandson a day after his birth this April. I'm so thankful I got to realize this experience and like you, I hope to be able to watch him take his first steps. All the best to you as well!
Good Morning. . .
I had Stage 1C in 2000, and a recurrance in February 2006. Coming up to my 5th round of 6. I agree with everyone. Bonnie is a real trooper and a testimony to the many options that are available. So, don't give up. Today, there is so much more out there, we know so much more, and HAVE so many choices. My prayers are with you and your family as you move on, make decisions, and deal with this situation. We're all here for you. Please keep us informed. Sending hugs and HOPE your way!
I was diagnosed in April of 2005 with stage IIIb, had full debulking surgery and six rounds of carbo/taxol. My CA125 was never positive even before surgery. My remission lasted between 6 and 7 months. CA125 went from 4 to 107 plus nodules in the liver and a mass in the lower pelvic area. I just had my first dose of carboplatin today for this recurrence. Although remission was short, my oncologists never considered any treatment other than platin-based for now. She wanted the taxol in as well, but I just could not handle it.
I wish you all the best. I know how difficult it is to get such news when the initial experience is so fresh in your mind.
Thank you all so much for replying to my message. I wish I had known about this network a long time ago. I had the cat scan on Monday and still haven't heard back from the Doctor. My husband put a call into the Doctor today (Thursday). Marsha40 hit the nail on the head when she wrote how difficult it is to get such news when the initial experience is so fresh in your mind. Did y'all have any symptoms prior to your recurrence? Kim