Need a vitual hug please

couple of hours ago found out its back. Diagnosed oct 2014 high grade serous ppc. Had 6 months weekly carb/pax with op midway.Even at start my ca125 was only 27 but when finished was at 9. Just lately had hot feeling on abdo wall and ca125 gone upto 19 so pushed for CT and today been told multiple tiny nodules spotted so back to chemo mon week. This time carbo/ caelyx monthly for 6 months. Do i need to use a cold cap again , hated it as found it very painful but did work but did have very thick hair to start with. Has anyone gone back into a good remission 2nd time round ? Have a bit of an ostrich mentality so dont google or read up on prognosis its myway of coping. Thanks for reading my waffle just feeling very alone right now.

35 Replies

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  • Hi - sending you a massive hug. I started carbo/caelyx for recurrence just before Christmas - I'm halfway through the 6 now. I have been using the cold cap again as I didn't want to risk it. I got through 18 weeks of it last time so I figured I could do 6!!!! You'll do it - I'm not finding it quite as punishing as last time although super tired, it's nice only having to go once a both rather than every week xxx

  • thank you so much for replying, its helpful to know you are not alone xx

  • Hi. Your case is vey similar to mine. was diagnosed Mar 14 with stage 4 PPC and had the same treatment and surgery plan as you.

    I had a recurrence after 9 months but decided to delay chemo and took a break for 3 months before starting carbo/caleyx combo. Not going to lie it was a tough 6 months mainly with fatigue but I got through it. You won't lose your hair. Sometimes it thins but not like the nasty taxol that takes it all. Dry skin is a common issue. Do stay off your feet for 4 days after. Have a really good read through the chemo info and take heed as it did help me. Order Udderly cream from amazon. It's fab for dry skin. I also had mouth ulcers but again kept under control with mouth sprays and biotherme dry mouth. If you search on here under caleyx you will get loads of info. I did that and it really helped me prepare. You do need to be kind to yourself and accept that you could need more rest. Once I did that it was less frustrating.

    On a much more positive note I've not had chemo in a year so longer after a recurrence than initial diagnosis so always remember that statistics are just that and you are an individual. I was told back at the start I had weeks to live but here I am alive, well and enjoying life.

    You are never alone on this forum, we are always here for support xo

  • Virtual hug winging it's way. Chin up, I recurred in 2015 and despite some doom and gloom days chugging along. My CA125 was 64 a few weeks ago, so something going on, but I can't change it by worrying.

    My Macmillan nurse talked me out of the cold cap but in the end I had Carbo only so didn't need it. Not sure Caelyx is a hair loss drug, I'm sure someone who has had it will say.

    Good luck

    LA xx

  • Hi, I've just recurred after just less than 6 months and am awaiting treatment, different type to yours (clear cell) but still had to get my head around it as we do. Went into denial and was quite annoyed with the medical staff who'd told me in hospital that it was back when I was admitted via A&E recently!!! Come to terms with it now.

    . We are all facing our fears of recurrence, our treatments or our news of recurrence in our own ways, it can be scary, it can be shocking, it can be numbing.

    I still laugh with my hubby, I feel calm now and just want to get on with it but not looking forward to looking like an android again!!! Been told I'm going on weekly taxol So hair will suffer!

    You were very proactive and knew your body which was good and you did really well to pursue your scan.

    I'm sorry you feel alone, that can't help but please know that everyone is here for you and rooting for you.

    We care, we really do

    Clare ❤️❤️❤️💐💐💐

  • thank you all for your lovely messages, will have to get my act together pronto xx

  • Cathy I mean this in the nicest possible way but you do need to do it pronto because don't let this get a grip on you. Have your cry and scream and shout but try to squeeze as many lovely things that will make you happy in over the next month, that will get you in a much better place mentally to cope with the chemo again. It's hard no doubt but you can and will get through this again.

    Most importantly come back here and share your fears or request hugs. Don't bottle it up ❤️ Xo

  • Fab words of advice - so so true. Xxx

    Clare

  • Hi, so sorry to hear this, massive virtual hug from me and remember you're not alone, we're all in this together and will be with you every step of the way xx

  • Sending (((hugs))) Cathy...it must be a shock even if you are kind of expecting it. Take some time to let it sink in...I am sure you will have a plan to get yourself through it by the time treatment begins xxxx L

  • Hi I am also on this chemo regime for 3rd recurrence originally diagnosed in 2012, I have had 2 cycles and so far no change with my hair. I am also in Devon, take care Pam xx

  • Hug for you too Pam xx

  • Forgot the virtual hug, chemo brain xx Pam

  • More virtual hugs coming your way Cathy. Dreadful news for you but you listened to your body which is great and being assertive for the CT scan.. Good for you and a treatment plan is on the way. I wish you all the best on your next journey. Keep posting as we all want to know how it's going. Love Michelle xx💐💐💐

  • I'm earlier in my journey, but sending you the virtual hug as requested, you can and will do this

    Marian xxx

  • Hi love,

    Massive virtual hug!

    I don't have experience of the drugs you are going on,but,I know other ladies on this site have and they will give you better info than me.

    I too have an Ostritch mentality and it has stood me in good stead,it's whatever you can deal with,but,please don't google, you are an individual person and we are all different,your journey is not others.

    Not sure you will lose your hair with this mixture,but my personal choice was not to do the cold cap,shave off all my hair and wear wigs and hats and my hair has grown back better than before .Wouldnt have chosen to lose my hair but not as bad as I thought.

    Anyway,I just want to wish you well with whatever happens and lots of love and best wishes,

    Carole xx

  • I have a very visual imagination and as I reading your post I suddenly saw a beautiful tall ostrich wearing a wig... now what's that about?!!!

  • Weird!,but I like itxxx❤😁

  • Hi, not had a recurrence so can't imagine how you feel, just wanted to send the requested big big hugs, stay strong ❤xx Jane

  • Dear cath. I just want to say I felt exactly the same as you then I found this site. I am ppc stage four. I can't really add anything, only that we are all here for you. I noticed Julie 40 had put about dry skin . The taxol seem to have affected my skin more than anything, so going to try the udderley cream which Julie mentioned. Sending you big hugs, keep in touch

    Lots of love Julie xxx

  • Hi Cathy, sorry you are back on treatment, my second recurrence was diagnosed later than it should have been, that was in 2010 and I am still here tormenting my oncologist and he isnt complaining. I had another recurrence in 2013 and got Gem and Avastin for that and it stablised somewhat again until now. Getting 125 done next week as bp is acting up and getting full bloods done anyhow but gp doesnt think its anything huge. The monitor showed an average of good so then when monitor came off, and gp checked it, it had gone down to almost low. So could be an infection of sorts or thyroid, so would be happy with thyroid rather than another recurrence

  • Hi Cathy. You will cope. You did it first time and, altho it's a shock to you now, you have the experience and that will help you no end. I was 3C at diagnosis Nov 2011. I had 18 months remission 1st time. Then it returned - six months of carbo/caelyx/avastin. Still on avastin & still in my 2nd remission 19 months on - feeling well ! As said above, you won't lose your hair but will notice a slight loss when you near the end of the 6 months - not enough for others to notice.

    The head-in-the-sand approach is not always so bad. It means you can bring your head out just for each next-thing you have to tackle - it spreads the stress to a lower level. So many of us here have coped with recurrences. You will too. Best wishes. Pauline

  • Hi Cathy, sorry to hear it's back. I am in the same place. High grade serious stage 4 oc/pc recurred after 6 months remission. Just had cycle 1 Caelyx/carbo - been told hair will remain (🤞). Not looking forward to hand and foot issues but there is some very good advice on here.

    I shall be following your story closely and hope we can support each other. I don't post as much as I should but read this wonderful, supportive, inspiring forum everyday.

    Sending you all the luck in the world and a huge virtual hug 🤗

    Stay strong 💪

    Janine xxx

  • Big hugs 🤗 xxxx

  • Hello Lovely,

    My special person had a reoccurrence in summer 2016 after 4 carbo/gem her CA125 was down to 9, last appointment it was 10.8 her oncologist team classes it as dormant she's now planning a trip with her granddaughter she has an appointment before they go and she's said what if my CA125 is up what if it comes back myself and husband have both said you're going anyway so enjoy yourselves and we'll deal with the rest when you get back depending on what happens at the appointment!

    Xxx

  • Sending you a virtual hug and I know just how you are feeling. I was diagnosed in March 13 stage 3c and my Ca125 has just started rising. Awaiting a CT. We are all aware that we may get a recurrence but it is such a shock when the monster rears its ugly head again.

  • Thank all of you wonderful ladies for taking time out of your busylives and own worries to lend your support. I have reading peoples posts since i was diagnosed but never posted, i should have done this earlier but us osritches don't spend much time above ground ! xx

  • Sending you a big hug and try to be positive. Everybody is different and so many of us are having good long term outcomes. You will win through, you have done it before so you will do it again. xxGina

  • Sending you a big virtual hug. You can do this. It is a fear we all dread but so many positive stories on here and I like you don't always post anything but I am kept going by what I read. Keep us updated and we will support you all the way xxxx

  • Huge virtual hug. We are all here for you. Xxxx

  • Sending you a big virtual hug...I found recurrence harder to deal with than first diagnosis in 2008 and I am still here fighting! You will find the strength. My best wishes for a long remission after your treatment xxx

  • Big hugs coming your way 🌻🌻😘

  • Sending big hugs too! I was diagnosed pox stage 4 in July 2015 and have just had scan after 18 rounds of Avastin after carbo/ taxol. So even though ca125 was 11 waiting for scan results is scary. Hoping for a bit of time before recurrence to get over the fatigue. You are not alone and this is a great site for support with so much positivity so keep your chin up and keep fighting knowing that there are people willing you onwards and upwards! 🌸🌼🌺

    Jane x

  • Lots of HUGS sending your way💕❤😺

  • So sorry to hear your news. Sending a massive hug. xxxxxxxxxxxx

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