Well the remission is over

So I went to the doctor today and he is guttered. I have rising CA 125 levels. I told him I was guttered as well. I guess it is back. This makes 2 reoccurrences. I really don't know how I feel. It is not unexpected but it is really a shock. I will know next week the extent of it with my scan. How do I find the strength to go through this again. What a crappy disease this thing is. My whole life is sitting infront of me. What did I do to cause this. I am in that black hole of fear and trying to find the strength to tell everyone in my family it is okay. Any advice is most welcome. Sharon

8 Replies

  • Dear Sharon

    I'm really sad reading your post and hearing how down you feel. I think we all have days like that and somehow 2nd recurrence is a bit of an emotional mountain. I was told I had progression after 2nd line last October and my oncy asked if I wanted to start treatment straight away or have a bit of a holiday whilst they monitored it. It was a full 8 months before I needed chemo again and I'm glad I had that time as it felt very special.

    I restarted chemo in June so now half-way though my third line. It does get you down a bit but hopefully you will have good days too. If you feel really down please talk to your team and let them know how you feel as I'm sure they will be able to help and support you.

    I know what you feel about family too. Somehow mine were fine with first and second line. This time round I sense they are getting frightened.

    Group hug for anyone who's feeling a bit down today.

    Sending loads of love xxx Annie

  • Hi

    I know exactly how you feel and hope that this feeling will soon get better. I was in remission on Christmas Eve last year and then it came back this year and I have been on Chemo since April but feeling ok so far. I have been told it is terminal but I try and take each day as it comes and get on with the things I used to do to feel normal again. I go to a hospice every other Wednesday and that helps because I have alternative therapy and the lady who does the Reiki seems to know when the tumours are not so bad because she says that part of my body feels normal and not hot as it did earlier on in the year. She was right last time before my scan, how it works beats me but I feel better after this, Indian head massage, massage and Tai Chi.

    I don't know if this would help you or you could be referred, I was referred by the hospital but I suppose it is just pot luck as with everything else on the NHS! The Chemo is working for me at present so let's hope it carries on because I don't want to go any where yet!

    Well all the best to you and a big hug and hope you feel better soon. Just remember there are loads of us out there wishing you well but I know it can be very lonely at times and that is the hardest part of this awful disease.

    Lots of love and hugs



  • Hi Sharon, I am really sorry you have got this news. Admittedly it does floor us but we can dust ourselves off and try again. That is all we can do. It is a shock to the system and yes we wonder why me? This disease is unpredictable and can rear its ugly head at us. I started regime 3 in 2013 October. It was Gemzar and Avastin and I have stayed on the Avastin and have got a reasonable response. I was extremely upset with my first recurrence but I got through it then had rt as tumour was small that kept it at bay for a while. So I am now on Avastin every three weeks, the lymph nodes in my tummy reduced at last scan to the amazement of my onc. So I am seeing him on Monday and more than likely another scan will be scheduled for Sept/Oct. I am doing okay, I went back to work last summer after finishing the Gemzar but on reduced hours. I have managed to get away now and again so dont say your life is over. Dont let this set back knock you down for long. Hopefully there will be a plan to control this for many years when you see your doctor next week, all the best

  • Sharon, it is a shitty disease and somehow when we get devastating news of recurrence, we think ' how will we cope'. But we do.

    Just wanted to send you hugs, kind regards and best wishes.

    Daisies xxx

  • Thankyou for all the hugs and best wishes. I will pick myself up and try again. I just need to wallow in my self pity for a moment. Thanks

  • Hi sharon

    I can completely identify with how you feel . I am 38 and feel I should be busy raising two small children and setting up a home instead of dealing with this disease . I too have a rising ca125 so looking at first recurrence s year after finishing chemo . On plus side the scan in June was clear so no date to start chemo yet. For the last 3 weeks I have been having a mild pain in. Lower right abdomen which I am struggling with anxiety wise. I am wondering if could be adhesions but I have not had any previous signs of this and over a year since surgery. I am sure just like so many of the other brave ladies on this sure we will dust ourselves off and it will get easier to deal with or accept just so disappointing at first . You mentioned aboard inhibitor in previous post ..rucarib I think did you get to go on this ? Hope your scan isn't as bad as you fear. If you don't have symptoms would you consider leaving treatment for awhile? Not sure how i would feel but thinking of different options that might be ahead of me afte next scan in september . Hope you feel better in yourself soon.

  • Hi Susan, no they wouldn't let me on the trial at the last moment. Gosh, 2 small children and you are so young. I promise to stop feeling sorry for myself you guys are so brave. I will post more when I know more. Thanks so much.

  • Hi Sharon . another recurrence is something we all dread, all of us fear is the one that cant be seen off. Ive had two recurrences since diagnosis in 2007. Im dreading my third because I dont know how I'll cope but deep down I know that I just will. sending you a big virtual hug. You're right though this is a crappy disease! Please let us know how you get on xx Kathy

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