"I can only give you information with my experience with a PetCt. For me a PetCt is a good scan because I have fast growing cancer and it picks up all the small disease that a CT does not. For instance, my last CT showed only progressio..."
Cindy809's Profile
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About Me: Female, 65, VA, member since Mar 2008
If anyone is having trouble reading this try your refresh button on your computer. I can't seem to get to my whole experience to come up. I think it is important to read for some because it could help others suffering and decisions about their treatments.I was dx 3c gra
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de 3 March 06. Surgery: 3/13/06 hysterectomy, debulking.Complication Pinched bowel Emergency surgery 3/27/06, ostomy. Went septic. 6 weeks ICU. Chemo May-Aug 06. Carbo/Taxol. NED. Bowel reversal, second look, scar revision Jan. 07. Feb. CA125 started to rise. CT clear. My CA125 continued to rise. It reached 886 in Aug. 06. A PetCt was ordered and showed cancer progressed rapidly to liver, spleen, pancreas, lower an upper bowel. Cancer everywhere! Doctor would not operate. Went clear across the US and had a secondary cytoreductive surgery with complete debulking. Dr. Spirtos in Las Vegas did the surgery. Had many complications. Went septic twice. Was in ICU for about 9 weeks. Lost the ability to walk and use of my hands. Went to rehab in Las Vegas. Home to VA and started Chemo Nov. 06 Gemzar/Carbo. Just started my 6th treatment and my CA125 is 9.4. My treatment should end this thursday 3/20/08. My CA125 is starting to rise again after my 6th treatment, 14.0. On 5/27/08 it is 24.5. TREND!!! Had a CT scan 5/30/08. Waiting for results. Bad news CA125 jumped to 130 in three weeks. Its in not on my liver now and spread to my lung. It is also in 6 other places throughout my abdomin. I start cisplatin/taxol today 7/8/08. I've done 3 platinum drugs in the last 18 months. I hope I can tolerate this one. Doctor is going to check every two treatments with a scan and that will determine whether I continue. All my hard work with the surgeries. They almost killed me. I don't get it. I'm very down. Well, more bad news. After my fourth treatment of cisplatin/taxol which have been hell on earth my CA125 went up 5 points to 76. That doesn't sound like a big number for some but during treatment. My CA125 either doubles up or doubles down. Doctor said it might be a plateu. Well see. Still frightened and scared. Nothing seems to be stopping my cancer. Well the Cisplatin/taxol has stopped working. Had a CT scan that showed 2cm and 3cm tumor IN my liver with 30 other stops. It was covering my liver. I asked about the cyberknife...my gynonc called and the head radiologist and we had a consult two hours later. I do not qualify for the cyberknife at this time. The radiologist called UVA for a procedure called SIRTS. He knows the team of doctors that do this procedure. It is done through the main vein to the liver with radiation in the form of sandy little balls. Cutting edge. That explanation is a breif description of the procedure. There is a lot more involved. My insurance will probably deny. It is FDA approved for colorectal mets to the liver. I had a pet ct on friday and won't get the results until monday. CT scans usually don't show all my cancer due to so much scar tissue etc. Hopefully all the cancer is only in my liver. I also have an appointment with the head of radiology at UVA that would be doing the SIRT procedure. I have a lot of road blocks. I must qualify for the procedure! No other cancer anywhere else. I'm bringing my CT disc and PETCT disc (not read yet) with me. The insurance is going to be the biggest problem. I don't have the time. I am not on any chemo now and with aggressive cancer I'm scared. All that growth while on cisplatin/taxol! It was pure hell during treatment. So, I won't have any answers until after tomorrow. I think the date tomorrow is Oct. 25. Well, I received the PetCT and there are two more spots t9spine and pelvis. Update..Today is Thanksgiving and tomorrow I will be getting my 2nd Doxil treatment. I quailified for the Sirt 6 weeks ago. Who knows what has grown inside me since that time. We are in the appeal process now. I no longer qualify for most trials. Let's hope the doxil shrinks the liver tumors enough for RFA. That will help to keep things under control until the Sirt. Hopefully there is no more disease gowing in other places. I do not feel well. I'm very tired and have pain. I'm very scared! This time last year I was fighting for my life in ICU. Nothing is working. Update:I just started low dose cytoxan and low dose avastin. It is January 20, 2009. The cancer has spread to a bone in my pelvis and my liver has too many tumors to count. I have an implant in my stomach and cancer on the right and left pelvis. I have a spot on my t9spine and spots on my lungs. I have another one on my bowel. This was three weeks ago. This progression happened while on cisplatin/taxol followed by doxil. The cancer in my liver is on the main vein that feeds the liver blood. I was yellow a few weeks ago and now my skin looks slightly tan. The whites of my eyes are still white by my liver enzymes are way off the chard. I'm scared! Ladies if you have read this please pray for me. Thank you
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Mom and Dad, Sister & Family, Home, The Shore, Wine Festivals, Motorcycling, Boating, God, Husband kids God Family first, faith in God, husband, children, grandchildren
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, family, holidays, parties, listening to music, my car, cooking, Dining out
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Feb 02, 2009
"Hi Dawn ... I looked up leiomyosarcoma. It is not a gyn cancer. What did your oncologist say to do for follow ups. If I were you I'd get insurance immediately!!!! This cancer should be monitored. This is what I found. You can goog..."
Feb 02, 2009
"Hello ! I just read our profile and I use to workout and eat properly too. Was at the gym at least 5 times a week. So I can relate to how you feel. This is going to take some time. Your bowels have been through so much. You might wa..."
Hello to all my wonderful ovca sister. I've decided to take a break for a while. I'm not feeling very well and need to process my latest news. It is not good an...
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02/09
Hope you feel better soon! Ignore the other note I wrote,I want to cheer you up,make you happy,and most of all give you hope!Sorry,your the closest women I have as a Mom replacement.I won't write things like that,ever again.Love always,Jen
02/09
God better do something quick for you,I must say I'm displeased with God at the moment and myself for not being stronger.A better Mom, I so want to be, I fake happy,but its getting more difficult lately.He's such an angel,he's a bit upset like me ,too! I'm so sorry don't pay attention ,I get overly emotional at times.I'm here to cheer you up see you through this,the last thing I want to do is upset you in anyway,for I care far to much for you.You have to make it I told God I'd never ask for anything again if he grants me this one wish.Its mean to not heal you,if I had the kind of power God had I would allow free will,but fix those that deserve it and even give second changes to those that don't.Lots of love and concern,Love,Jen P.S Its raining here,the angels in heaven are crying again!!!
02/09
I read a note about honey belles,cross between grapefruit and tangerines I think jane65 wrote to you about them,because xanax can't be taken with grapefruit.Milk thistle and Transfer factors,also an indian herb called neem is healing to the liver and takes away cancer cells,but of course check with doctor and immune boosters.I'm trying to find anything to help you.Lots Of Love,Jen
02/09
Hi Cindy, I just wrote you a note and it wouldn't go through because I forgot to log in. Would you be interested in exchanging emails so we could just write each other?
I saw my internist yesterday and she thinks it might be the Topotecan, not that I'm allergic to it, but it may be a side affect just coming out now. She said use the cortisone cream, and don't worry about it.
She trained at Sloan Kettering in NY, and did research in the oncology dept. there.
She read my surgery path report and said I'm staged 4B, because one of the cancerous lymph nodes is on a kidney ureter, and that's outside the abdomen.
She does not recommend maintenance chemo because the body, and bone marrow have to recover and can't with more toxic chemo going in. My oncologist feel the same.
Take care, Hugs...Jane
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