Not such good news

Dear All - I'm sorry I've been a bit absent and have barely read anyone's posts of late so sorry if I have missed anything major (I know about Claire, sadly - I was still active on the board at that point.

Some of you have asked me to keep you updated following my big surgery at Queen Charlottes. I seemed to be making a slow but sure recovery from the enormous surgery but was very fatigued with poor appetite. Christie didn't feel they could start my chemo as I was too weak so it kept being put back.

Two weeks ago I became quite ill with spiking temperature and was admitted. I discovered much to my shock from scans that the cancer is back already! Quite a bit back in my liver though it looked clear following surgery only 9 weeks before. There is also some kind of mass in the abdomen. Needless to say I am absolutely gutted and it's been a very emotional time. It does make me feel like I'll never get rid of the beast though I try not to think that way.

The good news is I am out of hospital and am booked for chemo next week so my only hope is the chemo will get things back under control which it should, fingers crossed and perhaps then I can have a break from all this and actually feel well. I don't think I've felt well for so long now it's getting hard to remember how it feels...but you know, I still live in hope. I'm still finding positives and have some amazing people around me helping me through this.

Sorry if I sound a bit whingey. I've been putting off putting this on here as I wouldn't want anyone to be put off surgery because of my results. I believe the surgery was done extremely well by one of the best surgeons out there but there's some things you can't control.

My chemo by the way is going to be calyx/carbo so any tips greatly received. I've had carbo before but not calyx.

Wishing you all well and thank you for being there.

Love Mary xxx

43 Replies

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  • Oh Mary.

    So sorry to hear your news. No wonder you feel so down. I’ve heard good things about caelyx/carbo. My friend is on it for recurrence and doing well. This disease is bloody relentless and tests us to our limit and beyond. Keep positive. We are all behind you.

    Sending you a massive heartfelt hug. Xxxxxxx

  • Hi Mary, I'm sorry to hear this, just sending lots of love and hope to you xxx

    My chemo was 12 week delayed and possibly the reason I relapsed so soon. Keep talking and you will adjust again to this latest news xxx

  • Hi Mary , you have been through a lot glad that your home and will be on treatment soon.

    As for Carbo/ Caelyx this combo is proving to be very successful .I've just finished my 6th treatment, my 125 was up to 1300 now after the 6th it is 67, my oncologist is giving me 2 more before Christmas, then a lovely break.

    In the new year I will go on caelyx as maintenance.

    If you go to top right of this site and type Caelyx in the Search My Ovecome, you will see quite a lot of post about Caelyx.

    As you know not all chemo suit everyone but this has been my best so I hope it works for you..Best wishes and take care Lorraine xx

    PS.... I had minim side effect dry skin and dry hand just used moisturizer, some days tired but managed still to go to my part time job.

  • Hi Mary , so sorry to hear how you've been . I know what you mean about not remembering how it feels to feel completely well . This is a hard beast to get rid of but we have to keep on trying don't we. I had my last chemo middle of August which shrunk the tumour is a bit but I can feel and say that it's coming back already . I am waiting to go on Niraparib which is supposed to delay the time between chemo . Here's hoping 🙄 . I do hope the chemo works for you . Big hugs and love coming your way. 😘😘😘🌻🌻

  • I'm so sorry to hear about your recent ordeal Mary, but glad that you have plans for your chemo to start. Hopefully you will start to feel better very soon and I send you my very best wishes for a positive outcome. Take care. Ali xx

  • My thoughts are you sound brave and inspirational NOT whingey. Glad the chemo is starting soon and I look forward to hearing it's doing the job. Wishing you love xx

  • Oh Mary, I’m so sorry to hear your news, you’re totally allowed to be fed up. This disease is bloody awful isn’t it and seemingly Indiscriminate, there’s no rhyme or reason to it.

    I’ve not experienced the carbo/caelyx but I’ve read quite a bit on it and it seems to be giving really good results.

    I can’t offer any advice but just wanted to send you a big hug and lots of love. Take care love ❤️Xx Jane

  • Hi Mary, sorry to hear about the beast coming back, but we will fight till the very end, I know it's worrying time for everyone, but keep your chin up, you can do it. We're all behind you. Lots of hugs. Luchie.xx

  • sorry to hear you have had a bad time lately, this disease just seems to want to kick you when you are down, I hope your next planned chemo does the trick for you. I am on Caelyx and have had my 3rd dose a week ago, I had a bit of a hard time after the second one and had to have 2 hospital stays as I couldn't eat or drink as couldn't swallow, then I got horrendous mouth sores and was getting de-hidrated. I was put on a reduced dose last time and so far so good. I am eating and drinking (although a lot less that I used to) and I am having mouth washed 3 - 4 times a day in the hope my ulcers don't come back. Good luck, and I hope all goes well for you. xxx Jeanette

  • I'm so sorry you're having a hard time on Caelyx, my mum has been prescribed some mouthwash, how are your neutrophils? Mum's been having a hard time with them being low and I wondered if others have the same issue. Lots of love xx

  • Mary--so sorry what you have been going through and hoping upon hope the chemo will get you in remission and give you a break from feeling badly all the time. Try to eat hardy before you start so yoy have as much strength as possible. ox

  • What a rotten saga. There've been quite a lot of discussions about caelyx with lots of tips recently, so if you use the search button top right, you'll find them. My main ones are bicarb of soda mouthwashes and Aveeno moisturising and start before you get problems. Best of luck xxx

  • How are your neutrophils on Caelyx, my mum has had a few chemos delayed and wondered if you had the same or how you got over it :) hope you're doing ok

  • They held up okay with the help of G-CSF injections.

  • Really sorry to hear this Mary. I hope the caelyx is kind to you and has good results. Vicki x

  • So sorry,wish you all the best of luck with your chemo.xx

  • Hi Mary So very sorry to read your post. I can't even begin to imagine how shocked you were to be told of a recurrence so soon after surgery. You certainly aren't whinging and to be honest even if you were this is the place to do it and we would all totally understand. I do hope that the chemo you are being offered stops the so and so in it's tracks. Please let us know how you get on. Sending you a big hug. Kathy xx

  • Hi Mary, sorry you have been through the mill but with chemo starting lets hope the beast gets its head kicked in😲😲😲

    When I was told I was going on to Calyx for my 3rd line the cancer was every where. It had gone silly but the Calyx did its job I am not in remission but for now it has gone back to sleep.

    I will keep my fingers cross for you & hope this works as well for you as it has for me.

    Just a few tips make sure your onc gives you mouth wash, Sucralfate tablets, Antacid & Oxetacaine Oral Suspension & use a very soft toothbrush. My daughter in law bought me a baby's toothbrush. Don't bother with a product called igloo it was very poor. Milk ice loollies were brilliant cold things went down very well. Keep your hands & feet as cool as possible. I keep a electric fan by my bed & a bottle of cold water.

    Good luck keep us up dated take care Cindyxx

  • Really sorry to hear that Mary...having gone through all that surgery you really did deserve a break but this disease doesn't always do what it should. I really hope the chemo zapps it into outer space for you xx

  • Mary, just want to send you hugs, you sound like you need them. Hope you get some strength for chemo & erm re whingey you're def NOT being whingey...that's why we're here. Hope you start to find some kind of 'space' where you can feel 'well' xxx

  • Although it's come back so quickly have you been told you now have less disease than before the big operation? Just a thought that if so maybe the chemo can more quickly knock back down what's there. AND you definitely don't sound whingey at all, on the contrary. Good luck with the new treatment!

  • Thank you so much everybody!! I'm sorry I can't write individual responses to you right now much as I'd like to. The chemo seems the only way to go and I appreciate all the tips. I've used aveeno before just as a shower gel and find it great so I'll make sure am stocked up on that. So far been lucky with my mouth through other chemos but will make sure I get the mouthwashes. Thank you again and here's hoping for better things soon as possible! xxx

  • So sorry to hear this, Mary, after all you went through - wishing you courage for the next steps. This cancer is just too sly for words. Here's hoping the chemo kicks it! xx

  • Thinking of you Mary and the best of luck with the Chemo!

    Dx

  • Hi Mary, Sorry to hear your news but you sound a very positive lady and probably when you start the chemo again you can kick it's butt! Best wishes Pam xx

  • DEAREST,dearest Mary I used very bad language when I read your post and shouted literally shouted at the unfairness of the situation and this bloody awful disease. I am so, so sorry to hear your news I can so relate to your discussion of what it is like to feel normal. I HAVE JUST FINISHED 6 months of Carbo and caelyx with minimal side effects and good results I just hope the same happens to you. Love Chris

  • Hi Mary

    So sorry to hear your news - it's a bugger this cancer!

    Here's to Carbo/Caelyx doing it's job and kicking you into remission!!

    Juliet x

  • I’m sorry to hear your news. You don’t sound at all whingey, we have this great forum to share the good and the bad; you have a very positive approach which is bound to flag when you’ve been through what you have.

    Good luck with the next chemo - I’ve not had calyx so can’t advise.

    Best wishes and hugs to you, Ali x

  • Hi, I thought to add one more tip for you when you start the Caelyx /combo. My nurse told me to suck ice during the infusion. So that is what I have done each time. I had mouth ulcers but never bad. Apparently the ice stops high concentrations in the tissues and stops bad side effects at least that is what I believe. I have done Caelyx chemo twice now and I am in the last stages of my second round of it. I have had 4 rounds of chemo in all, and the Caelyx has been the most successful. It has worked wonders for me putting my CA125 into the normal range again and putting everything to sleep. I hope it does the same for you. Best Wishes Sharon.

  • Oh my poor you.......I can read a lot of positivity in your post and much admire you for it. Take good care of yourself, lots of rest to build yourself back up. xx

  • Hi Mary,

    Sorry to hear your having to have Chemo, I am on carb/ caelyx for

    2 reoccurrence my CA125 was 129 after 1st chemo went to 109

    2nd 68 so great result just had 3 rd chemo on Wednesday so it is going in right Direction .I feel ok just a bit tired felt a bit sickly the first night

    But not to bad and was up in the night but I think that was due to the steroids.I did have a chest infection after the 2nd one and had to have antibiotics for 3 weeks but didn’t have a high temperature it was touch

    And go if they was going to let me have the chemo this week but my infection level was under 10 so no problem just freaked me out for about an hour while the nurses got hold of my Dr .

    Hope if you have this combination hope you get on ok and it works for you

    Sending big Hugs

    Pauline x

  • Sorry to read your post I’m sure you feel quite panicked inside as it feels so out of our hands. I’ve heard lots of good things about caleyx and know the prof is a big fan of it. Plus you keep your hair.

    Healing from surgery can make you feel down. I’ve got chemo blues at the moment.

    But chin up positivity rules and we’re all here to hold your hand

    LA xx

  • Oh my dearest Mary.....I am going to email you instead xxxx

    My heart is going out to you

  • Mary, my heart goes out to you. You’ve been so brave and positive, no wonder this news has knocked you back for a bit. As it’s only such a short while since your op, the remaining cancer cells haven’t had long to really dig in, so the chemo should whack them into outer space at which point there will be a deafening “Hurrah - s*d off” from all of us here. Sending lots of gentle hugs Jo 🌼🌺🌺🌸🌹 🌼🌺🌻🌸🌹

  • Sorry to hear about your problems. It is a trying time but try and stay positive and hopeful.It is the best medicine. Take care. We all feel your pain and send positive thoughts to you.xx

  • So sorry to hear your news and what you've been through, Mary. You don't sound whingey at all-just very brave and strong. I really hope the chemo works and doesn't make you feel too awful.

    Lots of hugs

    Lou xxx

  • Mary, am so sympathetic....I felt the same after being taken off Niraparib....the last thing you wish to do is discourage others.

    One of the most positive things I have received f that we are all different. It gives me empathy with the oncologists/surgeons who I am sure absolutely do their best for us both on the NHS and privately. The no. of new drugs being approved by the FDA in the states is astronomical and many despite being very expensive do not have brilliant survival rates. I was shocked when I visited the site by mistake(!)

    But despite everything we keep on keeping on for ourselves and others and I am full of admiration for you for undertaking the surgery. Caelyx worked well for me (I was totally rigourous about the moisturising cream and mouthwash) But I know it is not the same for everybody. Keep your chin up and hope it is the same for you. People have amazing survival stories but we know on this site all too well that positivity does not work for everyone...Clare's story amongst others, helps us realise, I hope that we mustn't beat ourselves up when things do not go as we hoped. In my case, I just try to make the most of every day...sometimes much easier said than done. And sometimes it is much better than I hoped... (Mind you tonight I am absolutely refusing to take my son to a late night night cinema showing and demanding it is early evening instead!)

    Am so glad you posted...thank you...but wish wish it had worked better for you. Hopefully the Caelyx combination will.....love and hugs, Chris xxxx

  • Mary,

    I'm so sorry the op. didn't work for you. (I'm currently looking at possibility of a 2nd op!). However, there are lots of positive feedback abt.carbo/caelyx combo so keep your chin up. We are all praying and keeping our fingers crossed for you.

    Gwen xxx

  • Don't ever say sorry for sounding whiney, you dont at all! You are posting how you feel and is a huge deal and your life. You can whing as much as you like on here, ultimately it is what these forums are for. There are so many people on here to help you through this time. xx

  • Hi Mary,

    Never apologise for having a whinge love. It's hardly surprising given what you're going through. I think sometimes we ask far too much of ourselves and that we are only human after all.

    Once chemo starts, you will be up for a fight again. In the meantime, try to nurture yourself and mentally prepare. You've lots of good support here.

    Much love

    Debs xxx

  • Im so sorry to read this, im glad you are at home now and the chemo is starting soon. big hugs ❤️

  • Mary I am so sorry to read this. It must be a bitter blow to be sure. However, you are strong and determined and I am confident that if you can get through what you’ve got through you will find a way to gaining good, quality time after whatever regime you choose has done it’s work.

    I am thinking of you and hoping that the better things come to you, whether it is having a good day and enjoying something nice to eat or going somewhere that makes you feel good, onto bigger better things as you get over this.

    All the best to you

    Netti xxxx

  • Hi Mary I'm so sorry to hear the beast is back . It sounds like the carbo/caelyx combination has been successful for others so that is something very positive to hang on to. I hope it all goes well for you, and know that we are all thinking of you. Kim xx

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