On 3/10/2009
ladyjogger31 wrote:
Hi Ladies. I just returned from my appt.with my Gyn/Onc. I've been so upset about my ct scan results. My Onc where I live read them and said it looks like a tumor. Well, when I went to see my Gyn/onc he said it looks to be a cyst. He did not seem concerned.He did a pelvic exam and felt nothing. I was thrilled. He still wants me to do more chemo. :( My ca 125 is at 50.6 and I have had non stop chemo since April of last year. He said he would give me low doses of Gemzar or Topotecan.Has any one been on them and how do they work, he said 3 weeks on 1 week off. I asked him if I will ever see remission, he said No. That really upset me. He said if I need a break he would give me one. Has anyone been on chemo non-stop? Was anyone ever told they will never see remission? Will lose my hair again? Anything help would be appreciated. I know you ladies will help me out; you’re always there for me. Thank God I have you.I pray everyday for a CURE for all of us fighting this disease.
Hugs, Prayers and Love, Terry
Terry, I had surgery Feb 2007, have stage 3C OC. I have been taking chemo nonstop except I took off part of Nov & all of Dec so I wouldn't be sick during the holidays. Then I have taken off this month to get dental work done, & my son came home from Okinawa, and since then I have had a gallbladder attack, and I see the surgeon today. I have to get this taken care before I can start back on my chemo.
My CA125 is 1895.8. When I read that people are panicked over 40 or 50 points, I think I would feel like I was well at that point in time. The lowest I have seen since my surgery is 106.5. At surgery time mine was 1489. My oncologist says I will never be free of cancer and will probably have to take chemo the rest of my life. I think perhaps this is a good thing, because they can control the cancer this way. Everyone that I know that has been in remission, when the cancer returns, it returns with a vengeance, and in many other areas of the body.
A dr told my sister that there are 2 types of OC, with one having a high CA125 count, and I did know 1 other lady whose numbers remained that high (she has since died, but she fought bravely for 5 years).
The main thing is that we keep our outlook bright, live every day to the fullest, and take everything we can in stride. While I am sick of taking chemo, I am so thankful that there is such a thing as chemo, and so many different types.
I took Gemzar, but it didn't work for me. I am now on topatecan, which makes me sick, but I can continue on it for a long time. (It doesn't make me lose my hair, but I would rather lose my hair than to be sick). It too, is once a week for 3 weeks then off 1 week. If this doesn't do what we want, the next step is to have the chemo put directly into my stomach.
On a side note, the first time my hair came out I wore a variety of wigs, from red punk to silver to blond. I had great fun with those wigs. The next time my hair came out, I just went bald. I felt like I had earned the right to show off my bald head. The rewards were many. I had a young man stop me in a restuarant to tell me he loved my hair style, and his head was as bald as mine and he had non-hodgkins. I was in a parking lot and a lady stopped my and told me she had cancer, and could we talk. Many times, I had people come up to me and just needed to talk to someone who knew what they were going through.
I had a CT scan last week and everything was pretty much the same, so even with my numbers so high, something must be OK. The concern with my gallbladder is that if cancer cells are present, will surgery make it spread.
Bottom line, we will go through many things with our illness, but we must make the best of it and enjoy whatever time we have. I wish you well and please, just try to enjoy life as much as you can while you can.