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CA-125 Rising

Gynecologic Cancers | Last Active: Jun 10 12:21pm | Replies (10)

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@jo72

I’m with you on the remaining positive part. When you don’t know how much time you might have left, you definitely don’t want to spend that time feeling down and lost. I think one of the morals of your story is that when you have something like Cancer, never let them set a medical test on your birthday, or any other special day.

Avastin only has kept my tumors from growing for much longer than it usually does. My oncologist has pointed that out. Thanks pal. I’m going back to see all my cousins in Minnesota at the end of July. I’m having a CT scan to check the tumors shortly before going. I have to admit that I hope I don’t find out that the tumors have quit responding to the Avastin before I go.

Thank you for the information on the repeat chemos. I have basically been told that when the tumors start growing again that there are a few other chemo drugs they can try but that my chances of surviving much more than another year or so are pretty slim. I’m working on preparing for the worst while hoping for the best and not giving in to that prognosis. I’m doing by best to stay positive as well and to maintain the belief that there is more hope out there than that. 🙏🏽

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Replies to "I’m with you on the remaining positive part. When you don’t know how much time you..."

Are you able to see a different GYN oncologist? When I was first diagnosed, I went to see a well-known and respected (in our area) regular oncologist. He was the first to advise me OC was treatable. He felt I needed to be treated by a GYN oncologist and referred me to one. This doctor also reassured me and advised me OC is treatable. He was wonderful. He had been in our area about 11-12 years, but last year moved back to Florida, where he was from, to help care for his aging mother and be closer to family. Before he left, once when he was out of town, I saw another doctor in the practice. She was NOT a fit for me! I was in tears after seeing her. Everything about my condition that I had viewed as a positive, to me, (cancer seemed to be contained in the pelvic area; not in lymph nodes; being diagnosed at Stage III rather than Stage IV - well she managed to smack down everything. Even went so far as to comment survival rate was 2-3 years. Talk about a gut punch! I had never asked for and never been given any kind of time line. I don't want sugar coating, but she was just a little too direct for me. When I saw my regular oncologist the next time, just before he left, I advised him of my experience with the other doctor. I was in tears just telling him about it. He was very comforting and I told him I did not want her to be my doctor when he left. I had talked with one of the nursing aides in the infusion center about it, and without even naming the doctor, she knew who I was talking about. She did some subtle checking to see which other doctor was considered good and gave me her name. The next time I saw the doctor who was leaving, I asked him to request to have my case assigned to her. He told me she had attended the same schools as he had, and in so many words said she had a similar "bedside" manner as himself , and had a good feel in dealing with patients and knowing how to talk with them and how much they wanted to know. He took care of it and I was assigned to her and I have been very pleased with her.
With all that, I have never been told Avastin only worked for a short period of time, so I can't really comment on that. Have you done any research or looked into supplements that are helpful in treating cancers? There are some out there. I will mention, when I started chemo after my surgery (debulking), I agreed to participate in a clinical trial drug. You, nor your doctor knows if you are getting the actual drug, or a placebo. Didn't work for me! Had a reaction after first dose (back muscle spasms), so I suspected I got the actual drug. Next treatment, got it again, and the reaction was worse - back muscle spasms, uncontrollable trembling, dry heaves. Obviously I was not getting a placebo! They immediately decided not to have me take any more doses (I wouldn't have any way). Look into clinical trials. Unfortunately, they are not available everywhere, and even my hospital hasn't had any others to offer. My original oncologist was actually the one who got the clinical trial approved this area. If things start to go downhill for me, we will travel to a NCI certified facility, that is a few hours away from where we live. We did go there for a visit last year to see one of their oncologists, to get my name in their records. As long as things are going okay for me, we have opted to stay local. Try to stay strong (I know it's hard), keep the faith and trust in God, and don't be afraid to ask for prayers from others. I truly feel God has listened to the the prayers of friends and family, and people I don't even know, where I've been put on prayer lists at churches. I always remind myself - every day we have, is a gift from God.