stage 3c ovarian cancer

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stage 3c ovarian cancer

by Angel_of_Hope on Thu Nov 29, 2007 12:00 AM

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Hi is there anyone else out there with stage 3c ovarian cancer? I was diagnosed in April 2006 with stage 3c ovarian cancer, I had the usual carboplatin/Taxel for 6 months thought I would then have a long remission period but unfortunetly I proved to be platinum resistant and the cancer became active within 5 months. I have just finished 6 cycles of caelyx with my scan showing a minor decrease in the desease. My CA125 is 82 (I would have liked to have seen it below 35!) my oncologist said yesterday that he would like me to have a break from treatment so I will not see him for 8 weeks, that makes me happy in one way, but nervous in another! Should he put me on further treatment in the new year he is going to use Gemcarbo (gemcitabine+carboplatin)   Is there anyone out there who has also been told they are platinum resistant? and what treatments have you had? I am only 56 always been well and healthy until this dreadful desease. Looking forward to hearing from you and best wishes to you all.

RE: stage 3c ovarian cancer

by sherco22 on Thu Nov 29, 2007 12:00 AM

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Hi!  I, too, have stage 3C OC.  I was diagnosed in Feb 07, and have been on chemo every since.  The lowest my CA125 has ever been is 106, with it currently being 219.  I would love an 82. I did 6 carboplatin and taxol treatments, and am now in a study with avastin.  I go back to my surgeon next week for a checkup, and figure we will have to do something different.  My CT scan shows no increase in anything, but it is disconcerting that the CA125 does not drop down to 30 or less.  I feel great and work full time.  I have not changed my schedule significantly at all.  When I took my first 6 chemo's, I had to have blood transfusions pretty routinely, but my blood has been fine of late.

How did they know you were platinum resistant? 

 

RE: stage 3c ovarian cancer

by Angel_of_Hope on Sat Dec 01, 2007 12:00 AM

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Hi Sherco, thanks for your reply, it does help don't you think when we can talk to others who are battling with this desease. Great that there has been no increase on your scan so the last treatment must have had an effect be it that your CA125 has not dropped. My oncologist has also talked about Avastin but we have to apply for funding from the primary care trust. When did you start your trial and who is running the trial? do you have it with any other drug or just on its own? and have you experienced any side effects? you say you feel well, that brilliant.  When you were first diagnosed, what were your symptoms? I had terrible pain one night, thought it was indigestion, then I was very sick, this lasted over 48 hours and I went to the A&E where there did tests and found I had a very badly inflammed gall bladder and also diagnosed the cancer! was not a good day!!   They say I am platinum resistant because it was less than six months from finishing 1st line chemo carbo/taxel that the cancer became active. My oncologist is quite excited about the developments going on for Biotherapy and immunotherapy, I just hope it will soon become available to offer as a treatment.  My name is Lin by the way and I live in the Uk. Hope to hear from you again, for now all the best and keep strong.

RE: stage 3c ovarian cancer

by Kellykil on Sat Dec 15, 2007 12:00 AM

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Hi Ladies,

My name is Kelly, I am 48, and I have stage IIIc ovarian cancer too. I was diagnosed in July of this year (was 47 then), and started the taxol/carbo chemo regimine in late August. My CA 125 went from 106, to 88, to 69, to 38 over the first three rounds of treatment, but then rose to 44 a week ago and then 55 last Tuesday. I still have four more treatments (two full rounds) to go of my initial treatment. The doctor is going to do a CAT scan this Wednesday to see if cancer is detected. He says the PET scan is the better scan, but that the cost and my mid treatment status prohibits insurance from paying for it. So, if the cancer is large enough to be seen on the CAT scan, I will have to have surgery (my fifth this year) to remove it. He doesn't think that will be the case, but even if no cancer is detected on the scan, he's starting me on Cisplatin (in place of the Carboplatin) this Thursday. I'm not sure if I have mutated resistant cancer yet, or if I have inflammation that is causing the CA 125 test results to rise. Your information is very helpful to me at a time when I'm hoping I'm not chemo resistant, especially this early in the process. I too have been a relatively healthy person, of younger age than what is normal for getting OVCA. Therefore if I should prove to have a resistance to treatment, I am devastated. What do you know and can share with me to understand the ramifications if I am? I'm going to do some research, but your first hand knowledge is very valuable to me. I am so sorry that you are facing such a challenge as well, and hope that something very miraculous can ocurr so we can all laugh about this 20 years from now.

 Look forward to hearing back from either or both of you, and thank you in advance for any time and wisdom you have to share.

Kelly

RE: stage 3c ovarian cancer

by Angel_of_Hope on Tue Dec 18, 2007 12:00 AM

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On 12/15/2007 Kellykil wrote:

Hi Ladies,

My name is Kelly, I am 48, and I have stage IIIc ovarian cancer too. I was diagnosed in July of this year (was 47 then), and started the taxol/carbo chemo regimine in late August. My CA 125 went from 106, to 88, to 69, to 38 over the first three rounds of treatment, but then rose to 44 a week ago and then 55 last Tuesday. I still have four more treatments (two full rounds) to go of my initial treatment. The doctor is going to do a CAT scan this Wednesday to see if cancer is detected. He says the PET scan is the better scan, but that the cost and my mid treatment status prohibits insurance from paying for it. So, if the cancer is large enough to be seen on the CAT scan, I will have to have surgery (my fifth this year) to remove it. He doesn't think that will be the case, but even if no cancer is detected on the scan, he's starting me on Cisplatin (in place of the Carboplatin) this Thursday. I'm not sure if I have mutated resistant cancer yet, or if I have inflammation that is causing the CA 125 test results to rise. Your information is very helpful to me at a time when I'm hoping I'm not chemo resistant, especially this early in the process. I too have been a relatively healthy person, of younger age than what is normal for getting OVCA. Therefore if I should prove to have a resistance to treatment, I am devastated. What do you know and can share with me to understand the ramifications if I am? I'm going to do some research, but your first hand knowledge is very valuable to me. I am so sorry that you are facing such a challenge as well, and hope that something very miraculous can ocurr so we can all laugh about this 20 years from now.

 Look forward to hearing back from either or both of you, and thank you in advance for any time and wisdom you have to share.

Kelly


Hi Kelly,

First of all may I thank you for your message and also to say I am very sorry that you too have this dreadful desease. I was surprised to hear that you have had four surgeries already in such a short time? from my experience in meeting other ladies at stage lllc those that are platinum sensitive and responding well to their treatment were first diagnosed over five years ago, one lady I know was staged at lV and that was six years ago. Prognosis based on general statistics do not favour platinum resistant.....but everyone is different and I truly believe if you remain positive and look after your immune system we can prove some of these statistics to be wrong!  The CA125 is an indicator of any activity but the scans give the true picture. Following my last treatment of caelyx in November my scan showed a minor decrease in desease progression..but at least there was some decrease. I am now waiting to see my oncologist in January who will decide whether I should start further treatment. Have you got the drug Avastin (Bevazusamab) available to you there? I presume you are in the States? Avastin has proved successful with some cancers and they are currently testing it with OC but funding is not always available, depends on the area we live.

I do wish you well for Wednesdays scan and hope it shows a substantial decrease in desease progression. Please keep in touch.

Very best wishes for Christmas and a Happy and Healthy 2008

Lin (from the UK)

RE: stage 3c ovarian cancer

by Kellykil on Tue Dec 18, 2007 12:00 AM

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Lin thank you so much for your prompt response. I also appreciate your input on the chemo. Yes, I am in the states, and I am pretty certai Avastin is available here. I have heard of it, and in fact believe that may be the drug a dear friend of mine (who also had ovca, currently in remission! YAY!) was taking during a clinical trial. I'm very encouraged by your input, and thank you again for it. I will definitely let you know what I learn from the scan.

 I must apologize. After I read my e-mail I realized I didn't clarify why I had so many surgeries. The first was to explore the problem based on a sonogram that depicted multiple ovarian cysts, tons of ovca symptoms, and a CA 125 level of 105. This is when the 5-6 cm tumor was found. Once removed by the general gynocologist, I then got surgery for proper staging, including 21 lymph node removal, hysterecomy, omentum removal, and abdomen port placement. After this surgery they discovered two nodules, one in the omentum (6-7 ml) and sadly, one in a lymph node (3.5 ml). The third surgery was to install a shoulder (IV) port, and the fourth was to restitch some vaginal stitches that came loose (along with an artery). So, not all the surgeries were to remove cancer, and I apologize for making it appear that way. Basically, I'm totally over surgeries at this point, and hope I never have to have another one. Well, except to (hopefully) remove these two ports one day because I'm in total remission. :-)

 Okay, this e-mail has taken on a life of its own. Time to go. But please note I will update you on the status of my test tomorrow, and pending a clean reading, will begin the final four treatments of my initial plan, with Cisplatin in place of Carboplatin. They will also be giving me another CA 125 test tomorrow, so I should know those results by Thursday. Hopefully they've gone down. I'm a positive thinking person, so I am expecting the best!

Talk soon, and thank you again for taking the time to write.

Kelly

RE: stage 3c ovarian cancer

by Kellykil on Thu Dec 20, 2007 12:00 AM

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Just briefly, I wanted to let you know that my CAT scan revealed a mass, as well as cysts on my kidneys and liver. I'm not sure what all this means yet, but will know more after a doctor's appointment today. Early mention of the potential for a fine needle aspiration, in order to use the contents to find the right chemo have been thrown out, but again, I'll learn more when I go today.

Just thought I'd keep you posted, as I said I would. Ovarian cancer is an  awful health challenge that I don't recommend anyone taking too lightly. Yet keeping a hopeful attitude is what can get you through the worst times. With all this, I still remain hopeful for a postive, long-term outcome.

Please be well, Kelly

RE: stage 3c ovarian cancer

by Angel_of_Hope on Wed Dec 26, 2007 12:00 AM

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Dear Kelly,

How did your appointment go on the 20th? I was so sorry to hear the news of your scan, but please please keep positive. Do you follow any particular diet plan? if not I do have some ideas if you would like me to pass them on. With all this worry I do hope you managed to have a nice Christmas. All the very best for a Healthy and Happy 2008.

Kind regards,

Lin (UK)

RE: stage 3c ovarian cancer

by jeanne_c_2 on Wed Dec 26, 2007 12:00 AM

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Hi Kelly and Lin, I was diagnosed with stage 3c ovarian in April
2007. I have gone through surgery to remove the ovaries, tubes and
parts of the omentum with debulking, then 6 treatments with Taxol and
Carboplatin, finishing in Oct. After finishing the treatments, my MD
prescribed a CT (abd, thorax and pelvis) which showed some
calcifications in the pelvis. A Pet scan was also prescribed but took 2
months to get cleared through insurance. Finally having the Pet done on
12/20, I got my report that revealed my cancer had not spread but was
really not decreased from my pre-chemo Pet scan. I will have a renal
scan (my kidneys are slightly "sluggish") and a scan of my heart and
then begin Doxil treatments. I see the oncologist on Jan 7th for the
final review of the scans and recommendations. I tolerated the Taxol
and carbo pretty well also, but Neulasta caused me such severe bone
pain, they held off on that, but as a result my white count was very
low and I have had to remain out of work, away from crowds etc. After
hearing the news of the pet scan, on xmas eve, I had to hold all this
anguish in and be strong for my family. Today, I'm so very depressed
and sad. I was really hoping to hear the word remission and return to
work, but that is not to be. FYI, in 1982 my mom was diagnosed and
treated for ovarian cancer. She recieved heavy chemo at that time (5fu,
cysplatinal and Adriamycin) she survived without recurrence for 25
years living to the ripe age of 86. She passed away a month before I
was diagnosed. She and her history do keep my spirits up, but I"m so
low right now. I have never been on any message boards before, so I'm a
newbie to this. I wish you both health in the new year and hope your
treatments give you some successes. I do go to Gilda's club weekly for
group therapy and that has been so very benifitial to me. I"ll have to
ask my MD if I'm platin resistent, they didn't mention it. My CA125
went down from in the 60's to the low 30's after surgery, and they have
remained in the same place. I think I went up one point on the blood
drawn 2 weeks ago and they redrew on the 24th. Keeping my fingers
crossed. Lin, what special diet do you follow?? I'm curious. Thanks for
this page, be well, Jeanne

RE: stage 3c ovarian cancer

by Angel_of_Hope on Mon Dec 31, 2007 12:00 AM

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Dear Jeanne,

Thank you for your message, I was so sorry to hear that you have OC, but was also inspired by your Mothers long long remission, that must give you faith. I understand when you say you have been feeling depressed and sad, I too get days like that when I look at my children (29 & 34) and fear that I may not see them married or have the pleasure of having grand children, but then the old fighting spirit kicks in and I say to myself although I might never be cured of this disease, I can accept living with it and doing as much as I can to keep well. That programme for me is to keep a positive attitude, get plenty of fresh air and excercise (I enjoy walking) and since I was diagnosed I have cut out tea, coffee and alcohol and all dairy products plus no red meat. I eat plenty of vegetables,carrots and broccolli especially, fruit, pulses & brown rice, fish (not farmed and no shellfish, also not smoked) occasional organic chicken or turkey. I have soya milk and yoghurts. I also have Miso soup which is based on the fermented soya beans. I drink lots of green tea, water and fresh fruit juice. I have the occasional glass of red wine. I supplement my diet with brewers yeast, selium, vit D, Calcium and magnesium with zinc, sea kelp, garlic, and paw paw.

I do hope the New Year brings you good news and that you have a good response to any further treatment. God Bless you, Lin x

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