New "girl"

Hi, I am new to My Ovacome. I have been searching for a support group for women with OC in my area, only to find that the nearest one is 70 - odd miles away! I came across the Ovacome site and thought this would do the job!

I was diagnosed with stage 3c OC last April, after having a total hysterectomy. During the op, the surgeon noticed some "suspicious" lymph nodes in my pelvic/groin area, which turned out to be cancerous, but could not be removed because attached to major blood vessel.I had a course of chemo (carboplatin/paxlitaxil) 0ver 4 months, which shrunk the tumours. I was then getting bloods checked every month, and in December, my CA125, which had gone down to 40 after chemo, was starting to rise. Had a CT scan at start of this year, which showed enlarged lymph nodes in the chest. I have started another chemo regimen, this time cisplatin by drip every week and etopicide orally. I am due to have another CT scan at beginning of May to find out if this chemo is doing the job. I am not sure whether my OC is now upped to stage 4 as it has spread from the original (abdominal) site. I asked the onc but he did not give me a straight answer!

Over the past 12 months I have met up with some lovely women and we get together on a regular basis. They have all got breast cancer, and I really wanted to talk to some other women who have OC. I have been trawling the internet trying to get some info, but I am sure it is better to talk to people who are going through the same experience as myself.

23 Replies

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  • 3c means it has spread to the abdomen but not invaded any other major organs according to everyone I have talked to. I was diagnosed at stage 3c in September 2009.

    There is a support group at my local hospital but I spend enough time in hospital without socialising there as well. As a result I find this group is great. Also when you can't sleep at night you can initiate, read and answer blogs and questions. This is a fantastic set of women and between us we have experienced almost everything the condition has thrown at us.

    Welcome to the group!

    Margaret

  • Thank you for your comments and the good tip about logging on to the site when I cannot sleep!

  • Welcome to the club! I can't answer your question. Like you, I'm a patient ...... but with a long OK period. However, this is a fantastic site. You can ask anything - speculate wildly, share triumphs and hopes, howl at injustices or just say what you feel!

    There will be someone who can answer your question, but I just want to say, you're not alone

    Love Wendy xx

  • Thank you for your welcome and your comments.

  • Hang on in there girl! And keep on fighting!

    Margaret!

  • I have found this site invaluble, sometimes its the last place I want to visit when surfin the net, and other times its the first place I come. Lots of love to you

    Kate x

  • Dear Jacknsooz

    Welcome to our friendship circle. The great thing about Overcome is that you always have access to friends who are in the same boat as you and will respond to any question or blog.

    I think you and I started our cancer journey at much the same time and we had the same diagnosis. I found the chemotherapy sessions rather isolating as the chairs were just that little bit too far away to have a natter. I haven't found a support group but per this site as I can drop in and out when I feel like it.

    Wishing you all the best.

    Annie

  • Hi jocknsooz,

    I am hoping to soon start the Rotterdam Regimen also known as the Van de Berg regimen which is cisplatin by drip and etopicide orally. Has your oncologist called your regime this?

    This will be my third line chemo - first 2 lines of chemo never reduced my CA125 to normal and possibly I had no response at all to 1) taxol/carboplatin or 2) caeylx.

    Please let me know how it goes for you - but it sounds like you respond better to chemo drugs than I do.

    I have had a lot of disease progression since being staged at 3c and must be 4 by now.

    It is great to have somebody else who is on this regime on board and I wish you all the luck in the world!

    Love Lizzie

    X

  • Hi Lizzie

    My Onc wanted to give me Caelyx but could not source any because there had been a fire at the factory where it is produced! He did not mention either Rotterdam or Van de Berg in connection with my current treatment of cisplatin and etopicide. I certainly semed to respond quite well to the taxol/carboplatin, but I did have a recurrence quite soon (less than 6 months) after finishing the first regimen. I think he said I am not responsive to platinum, yet my second line chemo includes cisplatin!? Guess he knows what he is doing! Good luck with your new regimen.Love

    Jocknsooz

  • Hi Jocknsooz,

    I asked the Professor this, and my understanding is that he said it is the action between the etoposide and the cisplatin (rather than the cancer itself) which is important - but is not fully understood. Is you cisplatin a long infusion administered with an overnight stay in hospital?

    Love Lizzie

    X

  • Hi Lizzie

    No my cisplatin takes a couple of hours to administer, so no overnight stay required. I have now been taken off the cisplatin/etopicide as my bloods have not recovered from treatment No. 4. My CA125 is coming down ok and I am going for a CT scan on 1st May, then back to see the onc on 14th May. He said he may just put me on etopicide alone after that.

    Love

    Susie x

  • Hi Jocknsooz

    I have also recently joined the group, having been diagnosed with OC in February. My oncologist has not actually said that I am stage 4 but as it has spread to my liver I guess I am!

    I am an expat living in Singapore, and although there is an expat support group, I often feel too exhausted by chemo to get there. I was so pleased to find this group and all the information, support and good wishes that come with it.

    Very best of luck with your new chemo regime

    Monique x

  • Dear Monique

    When I joined the group last May/June I was shocked to see everyone quoting stages as my oncologist hadn't mentioned this either. To some extent I think it's rather a positive thing not to worry about the detail as you'll find out from us how each of us is different. There's no way of knowing how the tumours will respond to treatment, the length of remission, or the number of lines we might receive. So whilst staging and CO125 counts are indicators they are about generalities and statistics. You're an individual.

    I do hope your exhaustion lifts. I found walking a great tonic whilst on chemotherapy.

    with very best wishes.

    Annie

  • Dear Annie

    I think you are right, it is all to easy to get hung up on numbers and statistics and my oncologist is very wary of giving me the opportunity of doing so - which I resent sometimes! We are all individuals, and as you say the many different stories here really brings that home.

    Hopefully I shall manage a walk soon - have done so a couple of times when not feeling too bad and agree, it is a great tonic.

    All the best

    Monique

  • Hi Jocknsooz, I have found this sight a life line, questions and blogs and so much support, hope you find it as helpful as I do. Good luck with your treatment. Love Sue x

  • Welcome to the wonderful world of Ovacome Jocknsooz...... available to all who feel they need support and guidance. As Annie says, not all oncs believe giving you the 'facts ' is necessary. I know mine doesn't. I have to ask him a direct question, and then he still prevaricates and says it is just figures. He has agreed that the CA125 in my case is probably a true guide, but it is not necessarily so in all cases. (Taken him 5 years to agree it is right with me!!).

    I must admit that going on here if I can't sleep wouldn't help me... make the mind too active again, but each o there own. Use it as you feel you want to as we all do.

    Good luck with your treatment.

    Love n hugs

    Viv

  • Hi may I ask you how you how you have been on Cisplatin/Etoposide? I am due to start these drugs soon and am rather apprehensive about weekly chemo. I tolerated Carboplatin/Taxol reasonably well. Hope it works well for you. Best Wishes Liz

  • Hi Liz

    So far I have had 4 treatments of cisplatin and 3 weeks on etopicide, with no bad side effects. Like you, I tolerated the carboplatin/paclitaxol regimen pretty well. Good luck with your treatment.

    Regards

    Susie

  • Thanks Susie that has made me feel a bit better about the treatment. Good luck to you xxxxxxLiz

  • Hi Jocknsooz

    This site will be invaluable to you. I am nearly 2 years into remission from stage 4 and was so scared when I was diagnosed because I also didn't know anyone with oc. The ladies on this site are so supportive and full of useful knowledge and there is always someone to pick you up when you're going through a bad time. Good luck with your treatment.

    Chris x

  • Hi Jocknsooz

    I was diagnosed stage 3c in December 1999. Cancer in both ovaries, perotineal fluid and omentum. First recurrence diagnosed in april 2005, with a tumor around my bowel. I asked at this point what 'stage' I was now at and my gynae/onc surgeon said that it is just treated as a recurrence from now on.

    So, my understanding is that cancer staging is given at initial diagnosis. Any statistics etc will also be based on staging at initial diagnosis.

    Vx

  • Hi Vicky

    Thanks for that. How are you doing now?

    Susie x

  • Hi Sooz :)

    I am actually doing 'OK'. My cancer is a lazy bugger and appears to do everything in slow motion. I finished 6 rounds of Caelyx in Feb 2010, which stablised the disease for a while, but it is now active again, and growing. As I am fit and well, with no real pain or other symptoms they are leaving any further treatment to such time as i do have symptoms. Should be having a scan in the next couple of weeks, so that we can see how its coming along.

    I'll keep you all posted.

    Vx

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