Recurrence after only five months.BRCA2.pleurodesis,deposits on spleen, enlarged lymph nodes in tummy,cancer cells in pleural fluid, caelyx

Can't quite get my head around all this.. so upset. Oncologist says I am now platinum resistant and 'incurable'.

Caelyx next option. My daughters are devastated. So many negative thoughts right now. What if caelyx does not work.....told not eligible for parp as need six month remission.... he says Caelyx 'may' keep it stable. Really worried about lymph nodes...does this mean it will spread through my system quickly? I'm only 64 I don't want to die, I don't want to leave my daughters and gorgeous granddaughter.

10 Replies

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  • Hi Carol

    It's 4 years since I was told I was 'non-curable'. Now when I look back on that time I laugh about how I rushed round 'sorting' everything!! I remember watching the firework display with tears streaming down my face cos all I could think was I may never see them again. Now I celebrate everything, yes it may be my last time but by hell I'm going to enjoy it. None of us know when our time will come but then nobody does! I could just as easily get run over by a bus!! My Onc does not give time limits, as she says 'we are all different and how long is that piece of string' :-) She has ladies who are in their 10th year and still going strong.

    Try not to worry, I only got 6 weeks 'remission' after my 4th line treatment. I was also considered platinum resistant and so thought my options would be limited, they're not. Their are lots of treatments available and now after you've had a break from the platinum based chemos you can go back. My 5th line treatment was back to Carboplatin and Paclitaxel, this time 'dose dense' (both weekly days 1, 8 and 15, then a week off). The last recurrence was lymph nodes in my clavicle and after 2 cycles they were completely gone. I completed the course in July and since then I've never felt better, I got a good reduction in tumours and more importantly no new ones. I'm coming up to my first checkup and I've actually delayed it as I feel so well and it's in the middle of my holiday, I need the sun more than I need to see my Onc, lol.

    Try to take each day at a time and allow yourself time for treats and special things. :-) and watch out for buses!! ;-)

    Best wishes

    L4W

  • Encouraging words L4w xx

  • Thanks for that response. I had 6 weeks after 3rd line and because of allergic reactions and now being platinum resistant I've had a year of treatment apart from that 6 weeks, with two months to go. You've given me hope that I'll have more of a gap when the caelyx ends.

  • Oh my goodness you are a ray of light in my life right now. I am stage 4 Terminal and I too cry at everything but you have given me some hope.... I've not had any for a long time. Thank you xxxx

  • Thank you for this lovely message L4W - what an inspiration you are. After reading about your journey, I feel I should be more positive. I just keep thinking the worse and crying and thinking I may not see next summer or next Christmas, but I must pull myself out of these thoughts. I am hoping the chemo will not bring me down too much, the carbo/taxol was absolutely terrible for me and taxol was stopped. I wish you well for your next check up, and I will watch out for that bus too.... Carol x

  • That's not what my Dad would say... We both have quite a sense of humour which some people don't get but.... One of the things he said to me in the early days after dx was 'Now I know why you were so stubborn as a child (I call it independent!!), you're going to need that strength to get through this and if you stumble I'll be there to catch you' so I dug in my heels and so far I'm standing firm. I've had a few wobbles but as time goes on and I celebrate another birthday or Christmas or watch the fireworks again it makes me realise that however long our life is, it's never going to be long enough. I wont let cancer define me, I am me and I embrace all that that entails :-)

    Now pull them boots on and go and jump in some puddles (chuckles at visions of the vicar of Dibley ;-) ).

    L4W

  • Hello. I had an enlarged lymph node before second line . That was in 2013 and it hasn't come back. I'm also platinum resistant now and I'm on caelyx, it's the easiest chemo I've had so far. After the first dose my ca125 went up but then with the next one it came down again. I was told my cancer couldn't be cured from the start, but that it could be treated, and that was in 2010. I had lymph nodes that were affected at diagnosis. I've had a lot of treatment but also some really good times between, for a year and a half even after 2nd line.

    I've been away for three separate weeks while I've been on calyx, two only to other parts of Yorkshire but also to Cork for a golden wedding where I swam in the sea and stayed up late for the celebrations. I had to pace myself but had a good time.

    I'm not afraid of dying but I too feel desperately sad when I think of the people I'll be leaving behind and that includes a grandchild who arrived after I was diagnosed. I try to have good times with him as well as the others. If he doesn't remember me I know they'll tell him what good times we had and how he asked if he could drink coffee 'like granny'. He's 2 and he knows me well enough to know that coffee usually comes with cake and that I've held his hand while we jumped in puddles. I'm 67. You're right it's too young.

  • Thank you Lesley, you are also inspirational and I am so pleased to hear about your journey, especially with the lymph nodes, because I thought that one they were affected, that meant the cancer would spread around my body quickly. I hope the caelyx is kind to me!! It is family that keeps us going because we don't want to leave them, especially grandchildren. We must keep positive for them! When I start to feel well again, I will have to plan some trips... xx Carol

  • I have it in my lymph nodes in chest stomach neck and underarms and for me it's been contained without treatment but now heading to kidney so starting chemo just Carboplatin as I struggled with the Taxol and Carboplatin. I am like you I don't want to leave my children I'm so so scared. As I know you must be. Xxx

  • Hi Ricky, thank you for reply. I wish you well with the carboplatin, it was not too bad for me on it's own. I will look forward to hearing positive posts from your treatment, thank you again xx Carol