My recurrence, would welcome your experiences and suggestions.

Hi everyone

I am stage 4 diagnosed in 2007, just over 5 years ago via a collapsed lung and pleural effusion due to lung mets. Had 4 carbo/taxol, debulking then 2 more chemo. Managed 4 years with a level ca125 of 16 after being 6500 at first diagnosis. ca125 started to rise last year at 20 in June, then 27 in October and 33 last month. My

CT scan in October last year showed new peritoneal met which has increased by 4mm to 16mm on recent scan. I saw my oncologist yesterday and they will review me in 3 months as I feel well. He said I might need to start chemo at a later date. My undestanding is that there is no detriment to delaying of teatment to outcome and I will be able to have carbo/taxol again. Not nice but was effective last time.I would really appreciate your experience of how long they have waited before giving chemo in these circumstances, response to same treatment second time around, how long before you need treatment again, any experience that anyone would be willing to share would be so helpful to me. Thanking you all, keep smiling even though its so hard sometimes,

12 Replies

  • Hi!

    Sorry to hear about your setback, but just wanted to let you know I'm thinking of you and sending you hopes and good wishes. Can't help in relation to your question, but it may be a good idea to give the helpline a ring (0845 371 0554). The nurses there often have up to date info on all the latest treatment options. It's a good sign that you're feeling well and the CA125 is still a low level, so you are right to try to keep smiling. Keep posting, so we know how it's going with you

    Love, Wendy xx

  • Hi Northerngirl,

    I've not been where you are now as I have had no remission (CA125 did not normalize). However, after first line chemo they did not rush straight into second line. They really waited until I was symptomatic again, which for me was bloating. They say they do not treat numbers (CA125) and unless the scan showed something immediately life threatening, I have the same understanding as you....using up a bullet earlier than necessary is not good and although you can use carbo/taxol again, there is only so many times it will be effective so you want to save it until you need it, enjoying good health while it is available!

    Good luck Northerngirl.

    Love Lizzie


  • Hi,

    I am so sorry to hear of your setback. I cant help you in relation to repeated treatment and this is something I have never head, I have had repeated chemo drugs but always with a different drug.

    I do know however that a tumour has to be a certain size before chemotherapy will have an effect on it, what that size is I can't remember. I know I went through a similar thing to you, new tumour and they wouldn't give chemo, this is when they told me it needed to be of a certain size for the treatment to be effective.

    I am one of those ladies who just goes from one chemo treatment to another with no break, so again we are all very different to each other.

    Good luck and let us know how things are going.

    Love Anna xx

  • Hi Anna,

    Yes, if you get more than 6 months remission from carbo/taxol then you can keep using it again. The rest of us (me included) are deemed platinum resistant and then the prognosis is not so good. BTW Anna, I had a 250 CA125 drop from caeylx so we are going ahead with dose #3 after all. We are hoping it is a trend and not a blip, I'll know by the end of the month.

    Love Lizzie


  • Nice one Lizzie good to hear some good news from you for a change, how is the tummy ?

    Now I was always classed as platinum resistant, but have been on it again recently. Although I believe from what The Prof says, the way my cancer has been reacting, is changing.

    It does baffle me at times lol

    Love Anna xx

  • Hi Anna,

    I was drained 2 weeks ago today, and when I saw my onc on Friday he said not much ascites. I certainly am not as bloated as I think I have been. The test will be my size in another 3 weeks. The bad news is my onc thinks it could be build up and wind which are causing tummy size in part. I know blocked bowel is a sticky end we can come to with oc, so I am a bit concerned about that. However, I have been managing 'to go' so far with the help of movicol so my 90 day count down to the end hasn't started yet ;-) I drove myself to my blood test today for the first time in 3 months as my tummy was so yucky I didn't like being a passanger let alone a driver, but maybe it is physcological knowing about the 250 drop, but I do feel better.

    Good luck with the Avastin next week!

    Love Lizzie


  • Lizzie, what would we do without our laxatives. My main problems is severe fatigue and tiredness, wondering if it is down to the morphine patches, so I am trying to wean myself off those. Have very dull ache at the bottom of the stomach, so roll on start of new treatment. I am sure my Onc was trying to kill me off with the last stuff, I have never felt so tired and so fatigued as I do now since I had my debaulking..

    Keep up the driving !

    Love Anna xx

  • Hello Northern Girl

    I was diagnosed with stage 3b in 1999. I had taxol/carbo and was in remission for almost 5 years.

    My second recurrence in 2005 was treated with taxol/carbo, again I responded well and was in remission for 4.5 years.

    I understand that when you are using the same drugs again, the longer apart they are used the better result. However 5 years is a good period of remission. Having a good result like this to caroplatin means we are platinum sensitive. I was uplifted to hear that a lady on here had been given more than half a dozen courses of platinum based chemo which all had a response before she became resistant to it, and I think this is very good news. My next chemo will be carboplatin again (so that will be the 3rd time I've had that).

    As for waiting to give the chemo; this is the stage I am now at. A professor I saw at Barts told me that a large tumor will shrink to the same size as a smaller tumor, so may as well wait till it is a bit larger. I am also feeling well despite numerous(4 at least) tumors and so they say there is no need to treat me at the moment if I am asymptomatic. If I started to be in pain, for example, this would be a reason to start chemo. Put simply; I am feeling well now but having chemo would make me feel worse, so why do it?

    I must confess I find it difficult to accept, as it does not seem to make sense, but they are the professionals so we must take them at their word. They did say that a lot of ladies cannot accept this and prefer to have the chemo now, and if I wanted they would treat me now.

    Take care


  • It is really strange but you sound just like me, unfortunately mine has returned after 1year and this was discovered because I became short of breath and had

  • Sorry hit wrong button. I had a pleural adhesion to try and stop this happening again. I am starting chemo next Tuesday if I hadn't had to have the pleural adhesion the onc would have left me for 4months while I felt well..good luck you have done so ell love nikkix

  • Hello Northerngirl,

    My mother is also stage 4 OC with a pleural effusion diagnosed in Dec 2011. She had surgery in Dec 2011 and she has currently completed her third cycle of carbo/taxol. Her recent scan show that the pleural effusion is still there.

    Can I ask you a question?

    I would like to know when your pleural effusion disappeared and whether the surgeon did anything to the pleural effusion during the debulking op.

    I look forward to hearing from you.

    Good luck for everything.



  • Hi Cecile

    Of course you can ask anything at all. I had a thoroscopy first with fluid drainage of 6 litres from my lung and pleural adhesis using talc to stop any further fluid building up. My debaulking wasn't done until 5 months later after I had 4 lots of chemo. At first diagnosis there was no offer of surgery as it was considered too late but due to my good response to chemo they thought it worthwhile to operate. It was and I have managed over 4 years without any further treatment. My CT sacn still shows a partial loss of lung volume but no effusion. Hope this helps. Anything at all glad to answer.

    Thinking of you and your mum and all you ladies.


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