Dear Kristin,
Please don't cry, we're all in this together and we're here to give each other support and advice, from our own experience with OVCA.
You don't need to thank us for our patience either, we want to help you through your treatments, and concerns, just as we've tried to help each other.
I hope you always feel comfortable coming here to ask questions, or just vent when it feels like it's too much to deal with. We've all been there and it helps to talk to ladies who understand how you feel.
We're a strong group, but sometimes we need each other's shoulder, you have ours.
Have you started chemo yet, if so what drug are you getting? If not, when will you start?
Good luck, and good health to you.
Jane
thank you ladies for your patience with me. I have tears rolling down my face thinking about what you all are going through, knowing that I am just starting out in all of this. I wish you all good numbers and success in your treatments.
Kristin
Hi Judy,
Thanks for sharing that information, I hope you have the same success with Topotecan that I had for the last 10 months. It's been an easy chemo drug and you're right about each of us knowing our bodies.
Had my mammo. this morning, now I'll wait for that report. The stress never ends, but my husband took me out for a Chinese lunch, so we did something besides this damn cancer.
We're also watching a questionable spot on my liver, I usually like mine with fried unions and bacon!!
Feel good my friend, G-d bless you with good health!
Jane
When I finished the very first chemo, my CA was stuck at 8 for the last several rounds .. very good! 6 weeks later it was 17 and I knew immediately that was not good .. even though it was still "normal". Long story short .. it continually rose and 6 months later it was at 107. The scans could not "see" disease .. but anything under 1 cm will not show on any scan. My MD decided to try me on tamoxifen pills (works 10% of OVCA cases) and I was blessed with a dropping CA125. Within 6 months it was normal (20) ... for one month only and it started to rise again and we watched the CA rise for another 6 months until we noticed a 1.1 cm spot on my liver .. too small to treat with heavy chemo .. kept rising until Jan. 09 when the spot doubled and other mini spots showed up in my abodomen. I'm back on chemo. Carbo/taxotere. First two rounds were great on my Ca125 .. the third round only dropped it 1 point (from 126 at beginning and down to 43 after 3 rounds)... I knew it was not a good sign. Fourth round took it up to 59. I'm now on another drug (topotecan). The Mini spots cleared up with the carbo/taxotere. The liver spot continued to grow and is now 3 cm.
The point of this is that you will get to know your body and how seriously you can use the CA125. Some have high and no visible disease .. some have low and lots of disease .. everyone is different.
Jane .. I hear ya and know where you are coming from. Good luck with everything and God Bless You.
Judy
Hi Kristin,
I read your profile and you've obviously had a rough time with this OVCA, I hope you're doing better now.
I'm sorry, but I just don't have the energy to respond to all your questions and comments. Please go to the top of this page, and enter your requests for info. in the ask MedHelp area and I'm sure you'll get your answers re. different types of scans and the CA125 readings.
I can't recall every word my oncologist said regarding his preference for ME to have a CT scan rather that a PET scan, but it made sense to my husband and myself.
I have never heard of an oncologist not being concerned about a 10 point rise in his patient's CA125, especially if it has been a good marker for that patient's disease progression.
My relapsed OVCA was detected with a CT scan, and a 10 point rise in my CA last June, and I've been on chemo, again since then.
Please also ask your oncologist these two areas you mentioned on your reply to me.
Good luck and good health to you.
Jane
After two years of being away from this site, I rejoined today. I was diagnoed in April '07 with Stage 3 OVCA which had spread. I had an operation in May '07 to debulk, removal of my omentum, lymph nodes and reconstruction of my bowels. I also had some spots on my liver. I had the Mayo Clinic treatment which required 6 treatments. Every third week I went into the hospital for 8 to 10 days, receiving 3 liters of chemo (Cisplatin and Taxol) through a port in my stomach. I had a port put up by my collar bone, but it was deemed useless, so had to use a pick line. I finished chemo in November '07, and have felt pretty good until today when I went to my oncologist and got the news that my CA is elevated a little (from 8 to 11), but my CAT scan showed some problems with lymph nodes near my liver and esophagus. I was on a 4-month interval for blood tests (CA125) and doctor visits, but now have to go in every three weeks. My doctor has ordered a PET scan for the first part of July. He said the PET scan shows the hot spots. I'll be 67 in July, but I feel great except the neuropathy and swelling in my feet keep me from getting around as fast as I would like ... not to mention exercising, which is out of the question. I would love to hear from anyone who has had my treatment. To date, there are six of us gals in my area (Sacramento) who have completed my treatment and two of the six have had their cancer return. There were several others who started the treatment, but couldn't finish it, so not sure how they are doing.
Sharon,
I also wish your CA125 was lower, and I know that you're having a hard time with your cancer, if you need someone to talk to, please send me a note, or a personal message. I'd be glad to listen to you.
My CA125 going up, even a few points is most unusual for me and means something new is going on, or my chemo drug is no longer working.
I hope you are feeling better,
Jane
I agree with bohan54 - your numbers are to be envied! I look forward to the day when I might be able to say the same about mine. I am newly diagnosed, so I say this naively, but I thought that numbers might sway up to 10 points at any given time due to our natural body swings, and as long as it didn't go above 35 we should be in good shape...? I also agree that every doctor has their own favorites when it comes to scans, but I also thought that the PET scan was the better choice because it had better bang for the buck so to speak - less exposure to radiation and a better 3D view of any lingering buggers? I do not say any of this to go against any of your protocol, so please do not think I am. Again, I am new and learning, and I raise this more so I can learn from people with more experience. I appreciate any response to these issues!
Wishing you the best--
Kristin