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ktamp
ktamp Member Posts: 81
Hi my name is Kim and I'm looking to connect with other ovarian cancer folks. I'm 33 and was diagnosed Nov 20.

My whole story, it is rather long: I moved to thailand in Jan of 2009. I started having dizziness and lightheadedness. Sudden constipation followed by chronic diarrhea. Very fatigued. I came home in summer of 2009 and was hospitalized for anemia. I decided to go back to thailand for treatment as my husband was there and it was close to the time for my son's new school year to start. I saw many doctors over the next 6 months. I still had chronic diarrhea and my hemoglobin was still struggling. After being told I had food poisoning over and over, I finally saw the best GI doc in thailand and was diagnosed with colon cancer in Feb 2010. I came back to ohio for surgery at osu. Stage 2. I chose not to do chemo and went back to thailand. July of 2010, I was diagnosed with lynch syndrome. I never really recovered from my colon resection. In oct of 2010, I had a colonoscopy which showed the internal anastamosis was not healing. By March of 2011, I could no longer get out of bed. I had another colon resection in thailand in March 2011. I finally started to feel better. At the time of my resection CA 125 was checked as part of my annual bloodwork recommended by my geneticist. It was 125. I debated having a hysterectomy at the same time but my gyn oncologist felt it was likely due to the inflammation in my abdomen. So I declined to have the hysterectomy. By July 2011, I'm having trouble pooping again. I start freaking about reoccurence of colon cancer. We were moving back so I waited until we got back to the US to seek treatment. In Sept 2011, I made an appointment for my annual gyn checkup. Pap smear, uterine biopsy, and vaginal ultrasound as recommended by the geneticist. And another CA125. Vaginal ultrasound revealed a cyst on the right ovary and CA 125 was now 210. I scheduled the hysterectomy. And had a ct to take another look at right ovary. Saw my new oncologist who wasn't impressed but agreed a hysterectomy was the way to go. I had my hysterectomy on Nov 16. The plan was to send the ovary to pathology while I was in surgery. If malignent, they would proceed to take more samples and the nodes. It came back benign. My surgeons found endometriosis everywhere. It had adhered my bladder to my uterus and was wrapped around my colon. My gyn felt it was a good explanation for all my symptoms. 3 days later, the final pathology report reveals there was cancer in that right ovary. Clear cell. I was devestated, especially because we didn't have the nodes. Peritoneal washings were done and were negative but the cyst burst when taking it out. So I am staged clinically 1C. We didn't go back for the nodes. I started Carbo/taxol dec 7. I get carbo/taxol one week followed by two weeks of just taxol and then start over again. I am scheduled for 6 cycles. I missed dec 21 because my neutrophils were too low and now I'm on neupogen 3 days a week following chemo.

The chemo is killing me. I hate it. I literally feel like I am being brought to the brink of death every week. Anyone else been on this regimen of carbo/taxol? I'm thinking of asking for just the carbo/taxol every 3 weeks. The weekly regimen gives me hardly any time to recover.

Thanks for reading and I hope to find some new friends. I joined a colon cancer survivor site when I was diagnosed the first time and it was very helpful. I'm hoping to find some support and comraderie in my new journey.

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  • kikz
    kikz Member Posts: 1,345 Member
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    Hi Kim
    I am sorry you had to come here but I welcome you to a place where you will receive a lot of support, information and love. The women here are very special. When I found this board I was feeling so sick and so alone, I wept as I typed my first post. I was soon comforted and knew I had found people who really understood what I was going through.

    I had carbo/taxol every three weeks before surgery for a total of three times. After surgery I had cisplatin and taxol. I was sick with the carbo/taxol but for me the chemo post surgery was worse.

    Your comment about being brought to the brink of death is very acurate. Someone told me this and when I mentioned it to my gyn/onc he agreed. The good news is that it kills the cancer and we have to keep that in mind through the difficult times.

    You should speak with your doctors to see if it is possible to have the chemo every three weeks. Or other help you can get for your symptoms.

    I wish you the best and hope you are feeling better soon.


    Karen
  • Susan53
    Susan53 Member Posts: 178
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    Welcome
    Hi welcome to the ovarian site where you will find a room full of support. We are your teal sisters and we have been where you are. We are all different as to what we have to deal with and how our bodies handle it. I am sorry that you have had to deal with the colon cancer and all the other problems along the way. We will certainly give you all the support we can. I am hoping that your treatment can be made easier on you and before you know it all this can be behind you. You mentioned having Lynch Syndrome, I first heard about it when I was in the hospital after my hyst. One of the Resident doctors came in my room and asked me if I had Lynch Syndrome. I responded to her not that I know of and she then just blew me off. Of course I couldn't help but write it down on a paper and later check it out. I did ask my doctor if I had Lynch Syndrome and he said no. I also had carbo/taxol but mine was both every three weeks. Take care and please stay in touch. Hugs Sharon
  • Susan53
    Susan53 Member Posts: 178
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    kikz said:

    Hi Kim
    I am sorry you had to come here but I welcome you to a place where you will receive a lot of support, information and love. The women here are very special. When I found this board I was feeling so sick and so alone, I wept as I typed my first post. I was soon comforted and knew I had found people who really understood what I was going through.

    I had carbo/taxol every three weeks before surgery for a total of three times. After surgery I had cisplatin and taxol. I was sick with the carbo/taxol but for me the chemo post surgery was worse.

    Your comment about being brought to the brink of death is very acurate. Someone told me this and when I mentioned it to my gyn/onc he agreed. The good news is that it kills the cancer and we have to keep that in mind through the difficult times.

    You should speak with your doctors to see if it is possible to have the chemo every three weeks. Or other help you can get for your symptoms.

    I wish you the best and hope you are feeling better soon.


    Karen

    Hi Karen
    I love your new picture and especially the story behind the picture. It was very touching and beautiful. Thanks Sharon
  • LaundryQueen
    LaundryQueen Member Posts: 676
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    kikz said:

    Hi Kim
    I am sorry you had to come here but I welcome you to a place where you will receive a lot of support, information and love. The women here are very special. When I found this board I was feeling so sick and so alone, I wept as I typed my first post. I was soon comforted and knew I had found people who really understood what I was going through.

    I had carbo/taxol every three weeks before surgery for a total of three times. After surgery I had cisplatin and taxol. I was sick with the carbo/taxol but for me the chemo post surgery was worse.

    Your comment about being brought to the brink of death is very acurate. Someone told me this and when I mentioned it to my gyn/onc he agreed. The good news is that it kills the cancer and we have to keep that in mind through the difficult times.

    You should speak with your doctors to see if it is possible to have the chemo every three weeks. Or other help you can get for your symptoms.

    I wish you the best and hope you are feeling better soon.


    Karen

    Welcome
    I don't know if there are other Lynch Syndrome survivors here. I don't know much about the condition except that it must be really hard to deal with one cancer after another.

    I know how you feel about chemo. I had to give up on taxol altogether because it poisoned me so badly that I was hospitalized twice before the doctor quit giving taxol to me. In retrospect, I think I would have done OK if I would have only had taxol every 3 weeks.

    The reason the taxol is given weekly is because some research showed the "dose dense" method is superior to the every 3 week taxol schedule. In the end, you wind up getting more milligrams of taxol by the weekly dosing schedule. Hopefully, it's gonna pay off for you.

    Please stay in touch with us. We are here for you.
  • Cafewoman53
    Cafewoman53 Member Posts: 735 Member
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    Hi Kim
    Welcome to our group, I think you will find information, hope and support here. I don't know anything about Lynch Syndrone but I have done chemo. I have been lucky and didn't suffer too bad the first round Carbo/taxol. But I try to stay healthy by getting plenty of sleep. If your body is strong you will get thru the chemo, try to remember it is temporary and imagine the poisen killing off millions of cancer cells. I hope you feel better soon.
    Colleen
  • lulu1010
    lulu1010 Member Posts: 367
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    Hi Kim
    Welcome to our group, I think you will find information, hope and support here. I don't know anything about Lynch Syndrone but I have done chemo. I have been lucky and didn't suffer too bad the first round Carbo/taxol. But I try to stay healthy by getting plenty of sleep. If your body is strong you will get thru the chemo, try to remember it is temporary and imagine the poisen killing off millions of cancer cells. I hope you feel better soon.
    Colleen

    Welcome
    You have really had a rough time of it! I also was a long time getting diagnosed and was sick when I started chemo. As time went on it did not bother me so much. I actually got stonger but many get weaker as time goes on. Everyone is different. I did better with the Taxol every week than when I took it every three weeks. I usually felt well for 24-48 hours and then I vegitated on the couch for 4 days. Usually lost 6lbs. and didnt do much but sleep. Then I would get up and around again till the next treatment. You are weak to start with but tell your Doc the symptoms and maybe he can treat them well enough to get you thru the chemo. It isnt easy but being in the cheno "fog" kind of helps get you thru.
    Take time for yourself and get lots of rest. Let others do things for you.
    Keep us posted! We will all try to help if we can.
  • jbeans888
    jbeans888 Member Posts: 313
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    I am sorry to have to meet
    I am sorry to have to meet you here. I am 32 and I was diagnosed last Feb 2011 stage 3c. I received the same carboplatinum and taxol once every three weeks. I took it rather well, but because of getting thrown into surgically induced menopause it made it extra hard. Make sure you drink lots of water or take a laxative because the chemo is rough on the intestines. Mine actually linked from it and I need to wear a temp ileostomy for 6 months and that was more harsh than the chemo. Keep us posted and ask any questions. That's why we are here.
  • Radioactive34
    Radioactive34 Member Posts: 391 Member
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    I can do naught but echo all
    I can do naught but echo all here. You are welcome here. We will support you as much as we can. Hugs...sucks to me you here, but you could not be in better company. This group is the best.
  • ktamp
    ktamp Member Posts: 81
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    I can do naught but echo all
    I can do naught but echo all here. You are welcome here. We will support you as much as we can. Hugs...sucks to me you here, but you could not be in better company. This group is the best.

    Thank you for all the
    Thank you for all the replies. It helps to connect with other people going through the same thing. My family has been amazing in the support department but they don't truly get it.
  • Hissy_Fitz
    Hissy_Fitz Member Posts: 1,834
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    Susan53 said:

    Welcome
    Hi welcome to the ovarian site where you will find a room full of support. We are your teal sisters and we have been where you are. We are all different as to what we have to deal with and how our bodies handle it. I am sorry that you have had to deal with the colon cancer and all the other problems along the way. We will certainly give you all the support we can. I am hoping that your treatment can be made easier on you and before you know it all this can be behind you. You mentioned having Lynch Syndrome, I first heard about it when I was in the hospital after my hyst. One of the Resident doctors came in my room and asked me if I had Lynch Syndrome. I responded to her not that I know of and she then just blew me off. Of course I couldn't help but write it down on a paper and later check it out. I did ask my doctor if I had Lynch Syndrome and he said no. I also had carbo/taxol but mine was both every three weeks. Take care and please stay in touch. Hugs Sharon

    Sharon....The only way to
    Sharon....
    The only way to tell if you have Lynch Syndrome is via genetic testing. My insurance would not pay for it, so I didn't have it done. Instead, I have more frequent colonoscopies than average.

    There iscorrelationion between Ovarian Cancer and Colon Cancer that is caused by Lynch Syndrome.

    I had Carbo/Taxol every 3 weeks and my first infusion was a near-death experience, for sure. My BP and blood gases tanked and I passed out. I came to with an oxygen mask over my face and about 6 people hovering over me. I left the building in a wheelchair. After that, they slowed the infusions WAY down and that helped a lot. My treatments took 8 hours, because I could not tolerate the faster drip.

    Carlene