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Ovarian Cancer recurrance

nicol06810's picture
nicol06810
Posts: 18
Joined: May 2006

I was diagnosed with Ovarian Cancer in Aug 2005. I had a total hysterectomy. Also had 49 lymph nodes removed. 24 had traces of cancer. My Ca125 was up around 4,000. NOT GOOD! I finished 6 rounds of Carboplatin and Taxotere on 1/30/06. My CA125 went down to 7.8. Went for my 3 month check up and CA125 went up. A month later it doubled. I had to go for CAT scan and appointment with specialist to see if surgery was recommended again. It was decided that I would hold off on another surgery and start a new round of Chemo. My Ca 125 was up to 247.4 before the new round started. I am now on Topotecan once a week for three straight weeks and then one week off. I will have to do this for 6 months. After finishing the first month my Ca125 is down to 187.4. There have been no major side effects accept for some tingling in my hands and feet. Would love to hear from others who have had similar treatments and or experiences. I am very nervous about the future! I don't get any emotional support at home but I think it is because I am always telling my husband and my children I am fine because I don't want them to worry. I have always been their rock and I don't want to let them down. But sometimes I feel that I just want to let my gaurd down and show them I really am not that strong. This is really tough. Any support would be greatly appreciated!

mopar
Posts: 1948
Joined: May 2003

I saw myself in your post: 'I'm their rock... don't want to let anyone down... 'always saying I'm fine'. However, I'm fortunate that I do get much support. I finally realized that it's okay to say 'I'm not feeling well' or 'these treatments are tough'. But then, I move on from there and just do what I have to do to face this. It's okay to be fearful, not sure of the future, etc. We have a strong faith that really gets us through this. Assemble your 'troops' this weekend. Maybe just tell everyone, 'I'm going to need some help with this - we need to all work together', whatever comes to you, whatever you need to say. Actually I never expressed fear to my children, but told them I would 'do my best', 'I have a wonderful doctor', etc., and gave them the hope that I had, even though there were some times in the beginning that I wasn't sure myself. My husband was my sounding board. I think once or twice I told him, in a moment of weakness, that I didn't know if I could do this. But after that, I just felt relieved to have said it, and the hope and strength returned.

This is my second time around. I will know this month if 2 weeks ago was my last round of chemo. Your CA125 can go up and down, but obviously a continual rise signals something going on. However, the decline from 4000 to 7.8 is absolutely amazing! The tingling hands and feet are probably neuropathy. I had that the first time around. It got pretty nasty, but I took B-6 and L-Glutamine which minimized it a bit. And once chemo was over, it eventually got much, much better. If it gets too difficult for you, there are medications they can try to use to help you. I had the surgery and Taxol/Carboplatin the first time, and surgery and Taxotere/Carboplatin this time around. There are many women here who have had the Topotecan, so I'm sure they'll give you some insight on that.

You have come to the right place. We're here just about any time. You can e-mail many of us personally if there's something specific you need to ask or just want to chat. My prayers are with you and your family. Don't underestimate your strength. Obviously, if you've been everyone else's rock all this time, now it's your turn. Use that same strength to get through this one day at a time, one MOMENT at a time.
Hugs.
Monika

nicol06810's picture
nicol06810
Posts: 18
Joined: May 2006

Hi Monika, Hi Debbie,
Thanks for your response. It is nice to be able to have other women who are going through a similar situation to talk to. I am going tomorrow morning for my "chemo coaktail" and then I am taking a much needed vacation for my off week. (My chemo treatment is 3 weeks on and one week off) I have decided that this is not going to make me stop doing the things I would have done if I didn't have cancer. I am trying to take one day at a time. It is however difficult at times because I am constantly thinking about the future. I am so afraid that my time on this earth is a lot shorter than I ever thought it would be. Do any of you ever get the same feeling? How do you deal with it? I try not to think about it but every so often it pops into my mind again. Any thoughts on how to deal with this? Thanks for all your help so far. This web site has offered so much already!

bebo
Posts: 9
Joined: Jul 2006

Yes, I deal with the fear sometimes more than others. When I was told after surgery that I had cancer, I had a feeling come over me that I was going to alright. I can't put it into words, but it was an epiphany. So I handled the original dx well. I was busy killing cancer cells and after chemo it would be gone. But after chemo I started worrying it would come back, not all the time, but evertime I had a physical pain that I had had before dx, I would worry. I had an incidence in May and I really never thought it was the cancer returning, but it was. That was when I hit bottom. I cried for 2 days, was sure I was going to die and leave my children. Somehow, I came out of that with the fighting spirit back. Some of the posts I've read on here and tealtalk.org have really helped to bring hope back. I refuse to let cancer take anything else from me. I am thankful for every moment and I refuse to think of dying all the time. I WANT TO LIVE! That is what I concentrate on. None of us know if we will die of this disease and we certainly don't know when we will die. That is between us and God. As my friend says "You're still here, and that's what we are going to focus on." We all have the HMG ( Human Mortality Gene). Feel your fear and don't ignore it. We all have to face it. There is a great book that I bought 20 years ago, "You Can't Afford the Luxury of a Negative Thought-A Book for Peopel With Any Life-Threatening Illness-Including Life" by McWilliams and Rogers. It is a great handbook for life and especially dealing with a life threatening illness. I hope it is still available. Love your life and the people in it.

Debbie

nicol06810's picture
nicol06810
Posts: 18
Joined: May 2006

Debbie...I know you are right and that I need to focus on the positive and stop thinking negatively but sometimes it is so hard! I have had 2 really bad emotional days the last few days and just when I thought I was getting myself back to normal I read an obit in the paper of a 43 year old woman with 3 small children that died after a long battle with cancer. It stinks! I am okay with the fact that I might died someday from this decease but I am just not ready to let my kids be motherless. They still need me and I still need them. Everyone I work with are amazed at how strong I have am and have been very supportive. I am strong on the outside but every now and then I have a day or two of just crying. I guess this must be my way of realizing that cancer will always be a part of me. I know I must keep positive! It helps when there are places like this to come to for support from others like me! Thanks for being there!
I have the next week off from treatment so I am going for a short trip to visit my mom in Florida! She can't wait to pamper me. Maybe that's what I need right about now!
Thanks again for all your support!
Hugs....Vicki

bebo
Posts: 9
Joined: Jul 2006

Wow, are we similar. I was dx stage 3c in August,2005; hyst, omentum, small part of my bladder and colon were taken during surgery. I had 6 rounds of carbo/taxol and my ca-125 went to normal after 2 treatments, a good sign. It went to 6 after 4 treatments. In April of 2006 it was 9. In May had some abdominal cramps and got sick for a few hours. My onco had me come in and ca-125 was 46. So, it was back. The recurrence was harder than the initial dx. I was sure I could beat this stuff and with it coming back in less than 6 months my dr. wasn't encouraging. But, I picked myself my again and I'm back in treatment. I'm on Gemzar and Cistplatin. It kicked me the first treatment. The second has been better.

I found my husband crying one night and he said I can't lead this family without you. We have 4 grown children. I am the hub of the family. I chose to be a stay at home Mom, and I consider that a career choice. What everyone kept telling me including my children was "You have to start thinking of yourself first." This is very foreign to me, but while getting over 4 major surgeries at once, I had to start relying on others to meet my needs. It was hard and I sometimes resented not being able to do all the things I had always done. I celebrated the first day I could vacuum the whole house and mow the yard again.

We have to be as patient with ourselves as we are with those we love, because we should love ourselves just as much. Show your family when your scared, tried, mad, and ready to give up. They will appreciate the trust and you need the love and support. You need to take care of you. My family and friends have demanded it and so has healing from surgery and cancer. We will beat the cancer. You have my thoughts and prayers. Let grace happen and let you family be a part of it.

Love and hugs,

Debbie

jamilou's picture
jamilou
Posts: 202
Joined: Mar 2005

You know so many times it is the Mom who is the rock and the center of the family. It is hard to have that person sick but it is harder when that person isn't honest with the family and lets them know exactly how they are feeling. My Mom use to put on like she was fine when we (her 5 kids) knew that she wasn't. We have a lot of respect and admiration for our Mom but we also were a little hurt when she wouldn't let us know truly how she was feeling. We could have been there for her more than what we were if she would have just asked. I hope you are able to give in a little to your family and let them help you through this part of your treatment. Good luck and God Bless you and your family!
Jami

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