Quick recurrence

Hi... I have been so positive in this whole journey since diagnosis at Christmas 2011.. Indeed started chemo on Xmas day!

Had 6 cycles of weekly taxol and carboplatin with surgery in between to remove the offending ovary and all reproductive organs and the secondary tumours in omentum, rectum and appendix.

I have been off chemo for 10 weeks and abdo pain building.. Full body MRI , ca 125 up from 128 to 800! So"......... Oncologist started tamoxifen but this is moving too fast, I can feel it like a bush fire spreading :-(.... Back on chemo next week.... Am relieved as no big masses grown only barnacles scattered around bowel.....

Has anyone else experienced need for chemo so soon after last ceased?

Thanks gill

8 Replies

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  • Hi Gill,

    Just to say I am so sorry to hear of your recurrence, how awful for you to have started your chemo on Christmas day...it is so disappointing for you that it's back so soon...sending you best wishes for your chemo next week..love x G x

  • Dear Gill

    I hadn't read your post before we met yesterday. It's beyond belief that you can look so fit and well and glamorous and yet your CA125 has shot up like this. I have heard of others who've had an early recurrence after the first line of chemotherapy and they've had more success with a different prescription.

    If there's anyone who's going to beat this - sorry about the Ovacome pun - then it's got to be you. I really do hope that the new combination of drugs and chemotherapy does the trick. Some of us just don't respond well to the standard NICE treatments. The Rotterdam Regime has had some great results - but then I know you'll be grilling your oncologist for explanations and answers and you may want to check these out with a second opinion from the Royal Mars Den as Viv calls it.

    Let's keep in touch. xxxx Annie

  • Hi Gill so sorry ithe blighter is back! I never managed a remission diagnosed May 11 debaulking June 11 , six sessions of carboplatin./Taxol. Scan revealed further tumour so second operation in February to remove. Scan revealed barnacles on my bowel so was started on the Rotterdam Regime Cisplatin/Etoposide. I wasn't very well after the Cisplatin so asked if I could have a few weeks without chemo and have a holiday which I did and enjoyed very much. So now I am on Etoposide tablets daily for as long as my body can tolerate them apparently the barnacles have gone but I have two areas of disease near my stomach so let's hope the tablets can keep that in check! It is a hard road to travel but I try to keep busy, this site is great for reading about other peoples experiences. My oncologist told me if this fails there are other drugs he can try............... Very Best Wishes Susan

  • Hi there, sorry to hear you need to go back on chemo so soon. I have never managed remission either despite doing two differenent chemo regimes back to back. I've now had major surgery that has managed to get it all. What sort of cell type do you have? Mine is mucinous which is know not to respond well to chemo. Since you had a tumor in the appendix I hope your surgeon was sure you have a ovarian primary and not disease started in the appendix ( a type of cancer called pseudomyoxa peritonei or PMP). It's common for mucinous ovarian cancer to be misdiagnosis and actually turn out to be a type of appendix cancer, the ovary is the first place it spreads too. This requires different chemo drugs.

    Good luck and let us know how you get on. Do you know what the new chemo drugs are going to be?

  • Hi Gill,

    Like you I was diagnosed Xmas 2011. My treatment path has been somewhat different in that I had surgery first and then chemo (carboplatin, taxol and avastin) I had 12 weeks at the end of chemo before my CA125 started to rise and am now waiting to hear when I start the next cycle. I'm going on holiday next week as my husband and I need a break before it all starts again. I'm hoping, as I'm sure you are too, to be one of those who responds better to the drugs in the second cycle.

    Good luck.

    Love Liz X

  • Hi Gill

    So sorry to hear of your early recurrence, I had this too and have subsequently had two further lots of chemo which have made me feel ill but have not worked.

    I would recommend asking for early scans and blood tests when you start new treatment so time is not wasted on the wrong thing.

    If you are feeling well at the moment then make the most of it with a holiday or something before you start any treatment because who knows how you will feel once it's started.

    Sorry I sound so negative but my experiences have made me feel like that.

    I sincerely hope that your cancer responds to the new treatment and that you can get some remission.

    Love George x

  • Hi Gill,

    Sorry to hear of your early recurrence. Im on same boat as you. 3 months after last chemo my CA125 started to rise and now waiting to hear when I start the next cycle.By oncologist Im still under control.

    Best of luck

    zuzi X

  • Thank you ladies for taking the time to reply.... I shall print them off and take them with me to the oncologist on monday :-) and will report back.. keeping everything crossed as I did respond really quickly to the drugs last time round

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