mysecondchance's Journey with Ovarian and Fallopian Tube Cancer

Survivor: Ovarian and Fallopian Tube Cancer

Patient Info: Finished active treatment less than 5 years ago, Diagnosed: almost 7 years ago, Female, Age: 69

  1. 1
    over 5 years ago
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    Diagnosed

    Oh No

    My primary physician called me one of her healthiest patients. Other than my life-long battle with weight, I was in great health. I was not on any medication contrary to most people I knew either younger or older than myself. I began feeling sick the latter part of January 2010. My symptoms were mild indigestion, bloating, a full feeling and a persistent cough. I didn't feel that sick so I didn't see my doctor until February 26, 2010. She diagnosed me with constipation and had me take laxatives. I called in sick to work the first Monday because I was taking laxatives but each day I became weaker and by the end of the first week I had difficulty getting out of bed and eating or drinking anything. I kept emailing my doctor and she finally set up a phone consultation with a gastroenterologist. After hearing my symptoms, he set me up for a ct scan. March 16, 2010 was the date I had the ct scan which forever changed my life. I got a dianosis of Stage IIIc ovarian cancer.

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  2. 2
    over 5 years ago
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    Debulking surgery

    Procedure or Surgery

    I had my debulking surgery on June 21, 2010. My mom, my son and several family members and friends were there to support me. I felt peaceful before the surgery and I wasn't scared. Dr. Kado came in to talk to me and told me they would begin in about 20 minutes. Of course the next thing I knew it was over. He told my family he had been able to remove 95 % of the cancer. That whole day I was pretty out of it. I remember bits and pieces of people coming in to see me. It wasn't until later I remembered exactly who was there. I was scheduled to be released from the hospital on the fourth day but felt I wasn't ready so Dr. Kado let me stay an extra day. He told me I had sailed through the surgery and he was very happy with the outcome. They had removed my ovaries, uterus, fallopian tubes and appendix. I would begin chemo again in about five weeks.

    Went as Expected: Agree
    Minimal Recovery: Agree
    Minimal Side Effects: Agree
    Minimal Impact to Daily Life: Neutral/NA
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  3. 3
    over 5 years ago
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    Chemotherapy

    Drug or Chemo Therapy

    I had three rounds of chemo before surgery. Dr. Kado had told me frankly that the progression of the cancer made surgery impossible unless chemo shrank the tumors. I had intravenous infusions of carboplatin/taxol three times, three weeks apart. I felt fine after the first infusion, but on the second day I was in a lot of pain and called Kaiser. They told me to monitor the pain and if my temperature went higher than 100.4 I was to go to the ER. By late afternoon I couldn't take the pain anymore so my family took me to the ER. I underwent tests including another ct scan. The ER doctor was not sure what was causing the pain. She said it could be the chemo working, the cancer growing (oh great) a bladder infection, to name a few. I preferred to think the chemo was kicking the cancer's tush. She settled on a bladder infection. I have never had one and really don't believe I did then. It probably was the chemo doing its work. I was sick a lot during this time. I infuriated my family and friends because I couldn't eat, drink or get out of bed much. They infuriated me as well by trying to force-feed me and insisting I get up. Thankfully we were all patient with each other and made it through. The chemo I had after surgery was a whole different ball game. I was scheduled for three rounds again but each round consisted of three infusions. Day one was intravenous taxol. Day two was cisplatin through a port in my abdomen. Day eight was taxol through the port. I got so sick after the first cycle, I ended up in the hosptial for eight days. I had gone in to see my oncologist because I felt so sick and she sent me to the ER in a wheel chair. My white blood count hit bottom. They got me well and postponed my next infusion for a week. I made it through the second cycle although I was very sick. After the second infusion of the third cycle I ended up in the ER. My feet and hands would seize and I was lightheaded all the time. I had horrific bouts of diarrhea. I was on my way to see my oncologist because of these symptoms and I told my son to drive me to the ER instead. By the time we got to the ER, I could hardly speak. I thought I was having a stroke. They took me in immediately and determined it was not a stroke. It was determined my electrolytes had tanked. I was given intravenous potassium among other things and my speech returned to normal and the seizing stopped in my hands and feet. That is except for when the nurse would check my blood pressure. When the cuff tightened on my arm my hand would seize. The ER doctor was intrigued by this. This doctor thought they could get me well enough to go home but kept me in a 24-hour limbo room where it would be determined if I was to be sent home or admitted to the hospital. My oncologist told me later she knew I would need to be admitted. That evening the ER doctor came to my bedside with a colleague to see a demonstration of my hand seizing. She put the cuff on my arm but nothing happened. I said I guess I can't perform under pressure. I told her to try again and this time it worked. I looked at the two doctors and they had goofy smiles on their faces. The ER doctor said they had read about this in text books but had never seen it in person. Gee, I am always glad to help. I was admitted and spent five days. My oncologist decided I would not get the final infusion. I was elated and called family and friends who were also happy to hear this news. I was happy that they were getting me well so I could go home feeling healthy and not have to get sick again with that final infusion.

    Easy to Do: Disagree
    Minimal Side Effects: Strongly Disagree
    Minimal Impact to Daily Life: Strongly Disagree
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  4. 4
    over 5 years ago
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    Chemo brain

    Side Effects

    It's a joke among family and friends that I have chemo brain. I think I do even though it's been a year since my last chemo infusion. I found that I could not do more than one task at a time. If I was playing a game on my computer and someone asked me a question, I would say, uh, uh and then have to pause the game and ask them to repeat the queston. Now bear in mind I am also 63 years old. I cut and pasted the following info from the web regarding chemo brain and I think I had (have) them all. Forgetting things that they usually have no trouble recalling (memory lapses) Trouble concentrating (they can’t focus on what they’re doing, have a short attention span, may “space out”) Trouble remembering details like names, dates, and sometimes larger events Trouble multi-tasking, like answering the phone while cooking, without losing track of one task (they are less able to do more than one thing at a time) Taking longer to finish things (disorganized, slower thinking and processing) Trouble remembering common words (unable to find the right words to finish a sentence)

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  5. 5
    over 5 years ago
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    Constipation

    Side Effects

    This was and is a problem and it's not just me. This is verified by my teal sisters on the ovarian discussion group at the ACS website. I even had a chemo infusion postponed because of constipation.

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  6. 6
    over 5 years ago
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    Diarrhea

    Side Effects

    The other side of the coin. This was one of the most difficult and demoralizing parts of my illness. At times it was so uncontrollable I soiled my bed. Once I made it to my bathroom but not the toilet. I was afraid to move because I might slip on the mess. I had to yell for my mom (87 years old) and she had to clean me up as well as the floor. I couldn't stop crying. I felt very defeated at that moment.

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  7. 7
    over 5 years ago
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    Fatigue (tiredness)

    Side Effects

    Fatigue is still my nemesis but it is a small price to pay for being alive.

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  8. 8
    over 5 years ago
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    Hair loss (alopecia)

    Side Effects

    At my first visit with my oncologist surgeon he told me I would look a lot different the next time he saw me. I looked at him and he said, you are going to lose your hair. I told him I didn't care if I was bald for the rest of my life as long as I was alive. I begin losing my hair 13 days after my first chemo infusion. I found hair on my pillow and on the backs of chairs I sat on. I hated that mess. I washed my hair in the sink to see how much was really falling out and when I saw how much I decided it was time to take it off. I called my hairdresser who had promised to come to my house when I needed her to. Then I had a good cry. I told my mom, it's harder than I thought. But once it was off, I felt great and I liked the way I looked. Everyone remarked on what a beautifully-shaped head I have. I would never have known that. My mom referred to me as her mannequin. I had ordered scarves but didn't like the way they looked. They were the paisley-printed cotton scarves I had worn in the seventies. I told people I didn't look as cute in them as I had back then. I really didn't feel the need to cover my head. It was a freeing experience. I did not feel self conscious and never saw anyone look twice nor did I hear any remarks. Even children did not seem to notice.

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  9. 9
    over 5 years ago
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    Low white blood cell counts (neutropenia)

    Side Effects

    As mentioned in the drug therapy section I did have neutropenia. I had been advised at a chemo class I attended with my son that I should not eat raw fruits or vegetables unless they could be peeled, no eating out and of course everyone who cared for me should have clean hands. There are other things as well. I was hospitalized for eight days in an isolated room. I had never experienced such a weakness in my body. The medical staff got me well and boy did I feel good when I went home strong and healthy.

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  10. 10
    over 5 years ago
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    Fluid in the abdomen (ascites)

    Side Effects

    One of the first symtoms I had was bloating. I had been on a diet and yet my tummy seemed to be protruding more. As I got sicker my stomach began to stick out more and more until I looked like I was about 7 months pregnant. A couple of days after my diagnosis I had 5 liters of fluid removed and another 3 liters a week later. That gave me such relief. Once the chemo began I didn't have that problem anymore.

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  11. 11
    over 5 years ago
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    There was hope for me

    Celebration

    When I found out I had ovarian cancer I thought I was not long for this world. My primary called me on the phone to give me the news and she sounded devastated. Later that afternoon the gastroenterlogist called and told me I had Stage IV and there wan't anything that could be done. Well, shoot me now. This was on March 16, 2010 and in my mind I figured I would be dead by the end of summer. I went to my first appointment with my surgeon on March 22 and he was outlining the process. It all sounded so routine and matter of fact. I asked if this meant I had a chance and he said of course. I said that is all I have been praying for. After we left his office I was being wheeled down the hall (I was so weak at that time) and I said stop. I got up and hugged my cousin and the two friends who had brought me. They all looked at me and I cried, he said I have a chance. I felt like that was the first miracle.

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  12. 12
    over 5 years ago
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    Cancer is shrinking

    Celebration

    I was told about a blood test I had never heard of called the CA125. It is a tumor marker that can help diagnose the presence and extent of ovarian and other cancers. My initial result was 6900. Before my first chemo had increased to 9000+. After the first chemo it came down to 3200 and boy were we all happy. Dr. Kado had said if the chemo didn't work I couldn't have surgery. Without surgery I knew I didn't have a chance. The CA125 continued to decrease during the chemo. Post surgery it was 13 and has continued to decrease during the last year. My latest result was 3.

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  13. 13
    over 5 years ago
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    Finished treatment

    Celebration

    As I stated earlier my last chemo was cancelled and I began my post-cancer life in really good health.

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  14. 14
    over 5 years ago
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    Remission

    Celebration

    I was pronounced in remission by Dr. Kato on 11/03/2010. Happy Day!

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  15. 15
    over 5 years ago
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    Hair is back

    Celebration

    My hair started to grow back in December of 2010 and it really looked scraggly. I was tempted to shave it off but knew I had to grow it back sometime. In February I could hardly stand it anymore so I made an appointment with my hairdresser and once she shaped it up, it was okay. At first it grew back with some curl and a lot of body. My hair is normally stick straight and limp. I like it but now I think it is pretty much back to normal. It might have a little more body than It did beore.

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  16. 16
    over 5 years ago
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    Thanksgiving

    Celebration

    I couldn't wait to celebrate the holidays. I had not been sure I would still be around. On November 12, 2010 our hall toilet overflowed and we sustained major damage in the house. All flooring and the bottom three feet of walls had to be replaced. It couldn't have happened at a worst time. But we dealt with it. I see things in a different context now. It's hard to worry about things that can be fixed. We always spend Thanksgiving at home; you cannot pry me from my house. Well this year we had Thanksgiving dinner at Mimi's Cafe. I had planned to make a little apeech about how happy I was to be alive and grateful to the people who helped me get through the ordeal. My mom made a speech of her own in which she gave me full credit for surviving because of my determination and will to live. Wow!

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  17. 17
    over 5 years ago
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    Christmas

    Celebration

    We got to celebrate Christmas at home although the house was still in complete disarray. All of our belongings as well as furniture had been placed in storage and were returned a couple of days before Christmas. We had a couple of hundred boxes throughout the house. We had no tree and I could not decorate. I love to decorate and do so for all the major holidays as well as spring, fall, etc. But we still had Christmas dinner with family and friends. I made another little speech expressing my wishes for good health, to continue to have family and friends around and the time to enjoy them.

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  18. 18
    over 5 years ago
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    Birthday

    Celebration

    I invited family and friends to celebrate my first birthday post cancer. It was on February 12, 2011 and we had a terrific time.

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  19. 19
    over 5 years ago
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    Retirement

    Decision Point

    Once I got my diagnosis I pretty much decided I would not return to work. My job was stressful. I figured if my treatment wasn't successful I wanted to spend whatever time I had left enjoying myself and spending time with family and friends. If my treatment was successful I still wanted to spend my time enjoying my life and spend time with family and friends. I waited to make the final decison at the end of my treatment. My doctors kept telling me I would be able to go back to work. If I had to I guess I could have but I don't think I have the stamina to take the pressures of the job. I am happy I was able to make the decision and it was not determined by my financial situation. I do not regret the decision.

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  20. 20
    over 5 years ago
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    Pursue my interest in writing

    Decision Point

    I have always been a writer. I wrote poems as a child and as an angst-ridden teen. I wrote poems for birthdays and other holidays. Family members often asked me to write something for them to give to a loved one. At my office I was often asked to write whether is be for a birthday or to complain to management. I once wrote a letter to the editor for our unit when we were going through contract negotiations. I signed it from the unit but when the letter was presented to the paper they insisted on a name. I let them use mine; that sure put me on the hotseat. Once I retired I wanted to pursue my writing but wasn't sure how to go about it. I don't expect to write the great American novel; I just wanted to find an outlet for my expression. I took an online writing course earlier this year and while I think I learned from it, I didn't receive the feedback I was looking for. I emailed a teacher who's English class I took when I was well into my forties. I asked her for suggestions. Among others she suggested a blog. Although I worked on a computer at my job I am fairly helpless with my own but thought I'd give it a try. I went onto Google and they had a step-by-step process that helped me create my blog. I named it Life at Catnip Cottage. Yes, I am a cat lover but my only kitty died in July. I looked online for advice about writing a blog and am following (or trying to) two of their suggestions. One is to write no more than 500 words and two is to write only a couple of times per week. It is fun and satisfying even though I don't know if anyone other than family and friends is reading it. But the writing is for myself so that is fine.

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  21. 21
    over 5 years ago
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    Anniversary

    Celebration

    I went for my first annual visit with my gyn/onc almost a year to the day he declared I was in remission. Everything is great. I admitted to him that there are times when I feel a pain, a twinge or maybe bloating and my mind starts to race. He said when that happens to look at my CA 125 result which is currently 5. He said that is accurate. He said my cancer is in remission. He didn't tell me anything new but it felt good to be reassured. Even though I have been trying to maintain a positive attitude it is hard to get the statistics out of my head. Only 17% of women live five years after their initial diagnosis. So in my mind I expect the cancer to recur; I just keep praying it takes a while. I have been letting that shape my life and how I look at my future. After seeing my doctor I am now trying to let go of that statistic. I could be one of the 17% and spend years waiting for a shoe that my never drop. I am going to try really hard but as you all know it is not easy.

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  22. 22
    about 5 years ago
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    Removing "Cancer Sucks" wristlet.

    Celebration

    On Christmas Day I cut the "Cancer Sucks" wristlet from my wrist along with those my family members were wearing. I tied them to five teal balloons my cousin and her daughter brought over and I released them saying, "never come back!" I was overcome with emotion and sobbed on my cousin's shoulder. I said, "It's over and she said, yeah, it's over." It was a beautiful moment. Once I had my first-year check-up with my gyn/onc, I felt a renewed sense of hope and no longer wanted to wear the reminder of one of the most difficult times in my life. I want to truly move forward. No one knows their future and even though I have some pretty harsh statistics to deal with that is all they all.

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  23. 23
    almost 5 years ago
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    Birthday

    Celebration

    I celebrated my 64th birthday by inviting my "nearest and dearest" to a luncheon at my home. My cousin, her daughter and a close friend came early to help me prepare the food. My ice maker had stopped working and then we noticed the chicken wings were taking too long to bake. We determined the oven was not heating to the correct temperature. That explained why the cupcakes I baked the night before had taken so long to bake and had not risen. I had ordered personalized M&M's in pink, white and red. Some had my picture, some said, Kik's 64th (my nickname is Kiki) and the rest said "I luv you guys." I thought it would be fun. My son said, "Mom, you have told me at times that I am self-indulgent but this is the most self-indulgent thing I have ever seen." Then as he bit into an M&M he said, "Now I can truthfully say I have bitten your head off." I replied, "It's not the first time!" I also wore a pin picturing a tomato that read, "One hot 64 year old tomato." It was all in fun and my guests got a kick out of it. Despite the failing kitchen appliances, the food turned out great. We ate, drank a little wine and I had the best time. I had asked that no one bring gifts. I just wanted to spend time with the people I love. It was my second birthday after treatment and remission and I just want each one to be special. This one truly was.

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  24. 24
    over 4 years ago
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    Cancer is back/Recurred

    Oh No

    In April my CA 125 came back 23. Although less than 35 is considered within range, my oncologist had determined my nadir was 7. I was scared to death. I requested a call from the doctor. When she called that afternoon she said she was concerned too. She said I should have another CA 125 in two months as the number could possibly go down. That was a hard two months but the result was even worse. My count had gone to 46. I was immediately scheduled for a petscan. The petscan revealed a tumor about the size of a walnut to the side of my liver. By the time I got the news I was fairly sure I had a recurrence. I was hit hardest in April when the CA 125 first rose. When it went to 46 I was kind of expecting that and by the time the cancer was confirmed I took it in stride. It's a lesson I learned early on with this disease. Acceptance. I don't like it but I accept the facts and move on. What do we do about it?

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  25. 25
    over 4 years ago
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    Hormone therapy

    Drug or Chemo Therapy

    My surgeon who is a gyn/oncologist urged me to try Tamoxifen. The alternative was chemo but he does not believe in administering the chemo until there are symptoms. I have no symptoms at all and figured it made more sense to try the drug which may shrink the tumor rather than let it grow until I was symptomatic. It was really a no brainer because if the Tamoxifen didn't work I knew the big guns were waiting in the wings. My oncologist thought the Tamoxifen was the best choice as well. She said you feel good right? I agreed so it made even more sense to avoid chemo. With this disease I have already been told I will have chemo the rest of my life so if I can avoid it for now and feel strong and healthy that is how I want to procede. Although the possible side effects are a mile long as with most drugs; I have had minimal problems. Most common are the hot flashes which come and go quickly and only happen a couple of times each day. I have had a couple of days where I was so fatigued I rested the whole day. The Tamoxifen my have nothing to do with that.

    Easy to Do: Strongly Agree
    Minimal Side Effects: Agree
    Minimal Impact to Daily Life: Strongly Agree
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  26. 26
    over 4 years ago
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    Hot flashes

    Side Effects

    That is really the only side effect I have experienced so far.

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  27. 27
    over 4 years ago
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    Cancer is shrinking

    Celebration

    I had a CA 125 the day I started Tamoxifen so we would know where I started. It had gone from 46 to 115 in about a month. That tumor was growing. After one month on Tamoxifen my count went from 115 to 67. Thank God. My oncologist emailed me the news. Everyone was so happy especially me because I continued to feel good and now know that the drug is working. The oncologist had told me the drug may or may not work and even if it did work it could be a long process. A month later I had another CA 125 and as I waited for the result I tried to steel myself for whatever news would come. I didn't want to let it bother me too much if the count stayed the same or even went up some (hopefully not too much). I usually wait for the results to come in the mail because I find it nerve-wracking to call in. It takes about ten days for the letter to come. I was calm and surprised that the pending result was not uppermost on my mind. The letter arrived and I admit I was a little apprehensive as I opened it. To my great relief the count went down again. The magic number is 29. So far the news is great and I can look forward to the holidays knowing I will feel good. I don't need to look beyond that for now.

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  28. 28
    about 4 years ago
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    Oh No

    My CA 125 dropped to 24 in October, Unfortunately the November result rose and continued to rise for the next two blood draws. My oncologist determined the Tamoxifen was no longer working so has switched me to Femara. I broke down in her office in November because I was upset that the Tamoxifen was not going to be the answer to my prayers. I have had it with this disease and told her I want it to go away but I know it won't. It was a bad day but I got over it. The other night when she called to give me my latest result and her decision to change meds, she told me if the numbers start to bother me too much, we can do chemo. I told her I agree with her and the surgeon to stay away from chemo as long as possible. I told her I am just afraid the cancer will drift off into other areas if we let it grow. She assured me that with the monthly CA 125 that will not happen. I am still feeling so well, with no symptoms that it would be foolish to mess with my quality of life with chemo at this point. So what is there to do but move forward and continue to enjoy the good health I have. The first listed side effects of Femara are hot flashes, hair loss (great!), joint pain and tiredness. I have been experiencing hot flashes with the Tamoxifen. I don't relish losing my hair but if it starts to look noticeably thin, I promise I will have it shaved off. The journey continues. I am in the process of planning my next birthday party. It will be smaller this year because I am feeling a little overwhelmed right now. I am only inviting my retired friends and family because it falls on a weekday. This will keep the size down and hopefully eliminate hurt feelings for the ones not invited who are working. I had a difficult time with Christmas because I was feeling overwhelmed and when I tried to do more than I was comfortable with, I experienced anxiety. I guess I am dealing with the latest issues of my illness but cannot handle a whole lot more.

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  29. 29
    almost 4 years ago
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    Cancer has spread/Metastasized

    Oh No

    After a month on Femara, my count more than doubled so my oncologist ordered a petscan. The good news is that the original tumor is about the same and the SUV (standardized uptake value) has decreased. The bad news is there is another tumor above the first one. It is tiny but she fears it may cause problems with my other organs if it grows. She was ready to set me up for chemo and I asked if she didn't have anything else up her sleeve. She said no then after a while said she was tempted to try one more thing. I said, let's go for it. So I am taking Exemestane for one month and if the results aren't favorable, I will start chemo. She said, you'll lose your hair (as if I didn't know that) and I said, darn I just got a new hairdo and color. Oh well, I said, I look cute bald, too! So there's where I am at right now. XXX! I did have a nice birthday with my nearest and dearest. I had a really good time. Now I just have to put my big girl panties on again or actually I never take them off. This journey is one bump after another. You have to be prepared constantly.

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