Hitting a new low

I've been up since 3.30 am and have been out for a long walk. I saw my oncologist yesterday following my CT scan. CA125 now 93 and recurrence of 2cm tumour in peritoneal area with other smaller areas. She is suggesting Carboplatin and Caelyx to start whenever I "feel like it".

I don't understand. I feel so well with no symptoms. I want to howl and howl and howl. I've done everything I can over the last 2 years to put the cancer behind me and here we are again. I had to tell my two children and my sister last night and this is probably what's upsetting me most. I read other people's posts about this so I probably don't need to say any more. You all understand.

How can I "feel" like having chemo?? I made my husband promise me after the first time never to let me forget how awful chemo was, and never to let me have it again. I've read some of your posts about Caelyx and I worry. My oncologist is arranging a session with a psychologist - although already I feel the barriers coming up! I have a built-in cynicism. It all feels so hopeless yet I know I need to be positive for myself. Please help.

19 Replies

  • Hi minard,

    So sorry to read your post. There's no doubt that news of recurrence is as tough if not harder than initial diagnosis, as it means adapting to the idea that we have to live with this now. It's such a crap,sneaky disease that comes back even if we are feeling well and that plays havoc with the mind. But you CAN do this and still have a life, albeit not quite the one you had envisaged. I had recurrence last September and had a 2nd operation then carbo/Caelyx and with the 4 weekly cycle I felt pretty 'normal' for much of the time in between. The Caelyx did cause a bit of nausea but you keep asking them to change anti sickness meds until something works. I didn't get skin problems but was careful not to touch hot things - get a pair of industrial strength oven gloves!

    It is awful having to tell children and close ones, as we seem to have been getting 'over' it and they find it hard to understand it's come back. But I do think you are right to be honest with them. I hope you have good support and help with the children when you need it if they are quite young. Also the psychologist might just be able to help a bit with ways of coping or changing your thinking, so it's worth a try.

    You had a good response to chemo before so there's every reason it should work again, I really hope things go well and you start to feel more positive soon.


    Madeline x

  • Hi Minard,

    Madeline has said it all but I also took my 1st reoccurrance badly. Have had Caelyx and it was not too bad, just made me very warm.

    Wishing you all the best Trix x

  • Dear Minard,

    I can't share any experience as I'm still going through chemo after being diagnosed in March following surgery: number 5 chemo yesterday so one more to go then THE scan !

    I am so sorry that you feel so down, it's a hard time for you to hear that it's returned, then on top of that you have to take the burden of sharing that news - that's hard enough itself. I hope that others will provide reassurance and see that you've already had some good replies.

    Don't give up, you've recognised that you feel your barriers coming up at the thought of seeing a psychologist - try and manage that feeling as this could help you. I can relate to that feeling as I and my hubby are quite private people but my cancer and chemo journey has made me do things I wouldn't have done before such as go to support groups and you know I met lovely people who were just like me., give it a go, the first words out if your mouth can be ' I feel very uncomfortable with this...,'

    Take care, keep posting

    Clare X

  • Thanks everyone. I realise I must be pretty tired therefore everything seems bad, but this is self-indulgent. I've got to hang on to the fact that I had 2 years in remission on a platinum-based drug last time, so who knows - it might work again! I'm going to go back to bed now for a sleep, and I'm lucky I can do that too as I run my own business and work from home. Then when I wake up, I'm going to plan a short holiday before everything kicks in again. Hope you all have a good Thursday.

    Caroline x

  • Caroline, you are entitled to a 'Me' moment! The trouble us we all feel we can't have them, even I apologise to my hubby if I need to talk gloom to him! Crazy isn't it.Hope you have a good rest and great idea to have a holiday.i broke it to my work that I will need yo start taking some annual leave when I get back as I've been off work since the beginning of this annual leave year and only have until end April to take it all, I did tell my boss that muy hubby and I needed some time off that wasn't chemo based!

    Take care

    Clare x

  • Hi Gosh I so totally get where you are right now having had two recurrences. To be honest my first one was the same size as yours is now. I'm a sort of take the bull by the horns kinda gal and started chemo within two days because that's my way of coping - doesn't suit everyone but I had to feel like I was doing something. The 1st recurrence is the absolute pits, I went 4.5 years, and was to the point 'well I've done with this' then BAM! I was like you, the chemo was so bad never again, but I have had 2 recurrences and each time I opted for chemo within days, and after all that I'm still here nearly 9 years (in Oct) currently NED (who knows how long that will last!). I totally get where you are coming from with ref to telling your family, I felt each time that I'd let them down, I'd caused their pain even though I had no control over what was happening inside my body. I think once the shock has fully sunk in you will rally and you will get through this. Feel free to rant away here, sending you the biggest hug. Kathy xxx

  • Kathy, you really, really are a treasure. xx

  • Thanks Debs, I always hesitate to respond to anyone for fear Ill make them feel worse! Hopefully someone will tell me if Im saying too much lol xx

  • This post made me cry then you just lifted me back up. You're a blessing to everyone on this site. Much love xo

  • Hi Julie. I try to help , then again according to hubby I'm very trying..... lol. Hope you are doing ok. Kathy xx

  • Lol only a hubby could get away with those words. I'm good thanks just waiting on scan results xo

  • Fingers crossed for scan results do let us know how you get on xx

  • Will do thanks Kathy xo

  • Thanks Kathy.

    You've hit the nail on the head twice. First I used exactly those words (feeling I've let you down) to everyone yesterday. I tried so hard.

    And secondly, I'm going over and over in my head the rationale for not starting chemo quickly. On the one hand, it gives me some time to "enjoy" a month or so of ordinary life; on the other, you're obviously just giving the little ***s more time to grow inside.

    What do other people think (although obviously it's a personal decision)? I need to get this right in my head, but at least I'm not weeping all the time now.

    Hope you continue to keep well

    Caroline x

  • Hi Caroline - like others just wanted to send you a positive hug and you WILL find the strength to deal with this as somehow we all do!

    I've just started 3rd line treatment in as many years and to hear this bugger has marched again is like a hammer to the chest and never gets easier! But for me I have my howl and then grasp the mettle yet again and refuse to let this bastard win just yet! !

    Feel relieved that others feel they've let everyone down - so irrational but that's been where I've been struggling! My poor hubby and my 22 yr old daughter have been through so much because of me; I just feel so useless at having to put them through all this again! !

    Anyway Caroline please take heart - there are so many lovely people who will support you xxx

  • Hi Caroline.

    Hope you are feeling a bit better. This disease certainly messes with the head because the variants are ever the same. It's so complicated and frightening isn't it... I did read somewhere that many women have a longer remission after the first recurrence and you did respond well first time around which is something to hang onto.

    You keep on keeping on girl! Thinking of you.

    Debs xxx

  • Hi I totally understand how you're feeling, as do many of us on here. The worst part for me once recurrence was confirmed was upsetting the family again. Third time round they understand this is just how it is and we fit things around chemo not the other way round. As your oncologist has said there is no need to start chemo immediately is there any way you can have a family break together with your sister? Even just a day out/few days/weekend somewhere? We went out to Italy to see our new grandchild just before I started my current chemo regime and also had a 'whole family' break in the lakes just before 5th cycle (I delayed it a week) too. Don't let the chemo rule your life and you might be able to deal with it better? Hopefully you'll cope with carbo/caelyx ok. I did have a problem after first infusion but once they adjusted the dose for the second one, I've been fine. So you have that option if side effects are bad and the good news for me is that despite the dose reduction my mid term scan was good.

    Sending lots of hugs and positive vibes. M.B. Xxx

  • Hi Caroline

    So sorry you are having to cope with a recurrence. However, take heart, at least you went two years which was brilliant. My first recurrence came back after only four months!.. But my onc advised me to have carbo/caelyx and I had my final infusion yesterday. I had six lots - one every four weeks. I have found it much easier to tolerate than carbo/taxol which I had as my first line. You don't suffer from the aching legs and joints. I took my anti-sickness tablets and steroids and had no nausea. I haven't had any skin problems and only one bout of mouth ulcers which was my own fault as I was lazy about using a mouth wash. Having a break of four weeks between treatments is great because by week three I was feeling back to normal. The other good news is that the carbo/caelyx appears to have done its job. My ca125 is down to 12 and has been within normal limits the last three months. My mid-term scan showed the cancer was all stable. Obviously I now have the dreaded final scan in two weeks' time and shall be a nervous wreck when I go for the results but that just has to be faced. So all in all, don't be afraid of carbo/caelyx, it's not that bad. However it's really up to you when you want to start it again.

    Shall be thinking of you and sending you big hugs,

    Travy x

  • Caroline it really is upsetting having to tell everyone and yes you do feel like a failure because you fought so hard and it gets the better of you BUT you've done it once before and can do it again.

    After my first recurrence my Onc told me it was my decision to start now or later. It was July. I was literally just back the day before from a wonderful 3 week holiday with my family in South Africa. I wasn't ready to think about chemo again. He told me I could have a break but deadline was starting in Sep. I went off and decided wanted to enjoy rest of my summer. I went on holiday to Spain then Italy. I got my daughter settled in her new big school, son back to his last year at school. We then had my grandsons christening and I started chemo end Sep. A lot squeezed into those few months ! I was then mentally prepared to start treatment and was in better shape physically too as I had a break.

    It's an individual decision but if your Onc is happy to wait that is reassuring.

    I had carbo/caleyx and it was very tiring but it worked. My ca125 is at 9 so worth it.

    Sorry for rambling. You can do this ! Hugs xo

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