recurrence with caelyx

HI,

my name is Lorraine,

I live in Australia.

This is my first time on the site, I have been reading all the inspiring ladies for near 3 years now, my back ground history is satge 3c serous ovarian carainoma with peritoneal matastasises,

(quite a mouth full).

My 125c was 2700 had 3 treatments of carboplatin down to 400, then had surgery and 6 of carboplatin 125c down to 37,only went into recurrence for 6 month then back on carbon down again this time only a month.

Through all the treatment I had blood transfusions,fatigue, had a infection landed in hospital for 10 days,hair lose.

My 125c was going back up again but my team decided it would be better to give my body a rest.

I decided to go in and have a knee replacement as this was booked in before I had cancer,

I was concern that the 125 was going up as I had to wait 8 weeks before I could handle cemo, after the knee.

125c back up to 250 back on cemo this time caelyx as I'm now platinum resistant.

I have had 3 rounds of 6 at first no results,but my last test showed now down to 97, 3 to go.

I'm handing caelyx ok so far no hair lose had bad rash all over my body the itching is hard, 2nd round had blisters under my arms, just in the last week my toe nails are very sore, no shoes only sandles..

my team decide to give me steroids through my port before cemo this has really helped..

Moisturising 2 to 3 times a day plus use a steroid cream called cortic helps with the rash

I manage to still do my causal job in the hippy shop .

When I feel down I I go on to this site and this helps in reading all the inspiring ladies fighting this dreadful cancer.

I give all my love to all and thank you for reading my story.

24 Replies

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  • Hi Lorraine, what a lot you've been through and are still going through. I'm amazed you are still managing to work and think that you are great . I bet the itching is hard to cope with, I had a reaction rash over my scalp and neck when on Taxol this year and the only thing that stopped the itching was my husband putting loads of germolene antiseptic cream on my head!

    Sending you lots of virtual hugs across the miles, this is a great site and remember that you are one of the inspiring ladies yourself.

    Take care

    Clare xx

  • Thank you Chski,

    Husband are just great mine has been so supportive , cooking and shopping when I've been unable to. and putting cream on my rash'

    sending xxxxx Lorraine

  • Hi Lorraine. I too live in Australia & was on caelyx (with carbo). Just wanted to say that I had the thin skin under the arms too. What happened with me: it was summer & I woke up a bit sweaty. As I moved, my skin had fused together & it ripped apart. I stopped using deodorant, as I thought - it being chemical, it might cause more problems but my onc said to continue using it - he said that it's the caelyx that's coming thru the skin & the deodorant will prevent it doing so. I remember the sore toes too (and hands). Caelyx gave me a bit of a hard time & my onc reduced the dose by 10% after my 2nd session (of 6). It was bearable after that but it's not an easy drug. However, it got me into remission, so I hope it does the same for you. Good luck - Pauline.

  • Hi,

    Pauline66 thank you for your reply I'm only on caelyx great to hear you are in

    remission how long has it been? hope it will be for a long long time.

    As I said in my post I will be finished November, just in time for Christmas.

    best wishes Lorraine

  • Hi again Lorraine. I'm in my 2nd remission. The 1st one lasted 18 months. I then went on Carbo/Caelxy/Avastin. After the 6 doses, I remained on Avastin and I've been in remission again for 18 months once again. I'm on 3-weekly Avastin for as long as it works for me and I have to say I'm v. pleased with it. I feel fit & well and able to do all I want to do. Roll on November for you, hay? I wish you a long remission ! best wishes. Pauline

  • HI Pauline....I'm encouraged to read about your second remission. I have been in remission for 19 months now, but it looks like I may be having a recurrence...CA125 trending up. I'm hoping that another round of treatment (whatever it may be) will work for me again the way it has for you.

    May you stay in remission forever! Best to you and your family......JudyV

  • Hi Pauline,

    I hope this post finds you in good sprits,

    Just like to know, I went in for my125c check before cemo ,I was disapointed it had gone down to 98 now this time it's up to105 I have 2 more to go.

    Did you have the same experiance?

    cheers Lorraine xx.

  • Hi again Lorraine. I wish I could help you more on this. I've looked back at my notes. Seems I didn't record my CA125 during my 1st series of chemo, apart from at the initial diagnosis - think I was in shock for months - always been healthy and couldn't believe this could happen to me. When the OC returned - I knew it had as I'd found a swollen lymph node in my groin but my CA125 barely rose. My onc said my CA125 was no longer reliable - it barely rose during the cycles of chemo either, but my scans showed the remission. Good luck. Pauline

  • Thank pauline.

    I hope all is well with you

    Lorraine

  • I hope all is better, I know what you are going through. Hold on to your faith, I'll keep you in my prayets. 🙏😇🙏

  • Hi Lorraine, welcome to our club, the one that none oif us really wanted to join. You have had a roiuygh time of it but hopefully the caekyx will work better for you and give you a longer remission. You seem to have a good team around you who are doing their best to make things better for you, I'm glad about that. Your CA125 is goinbgoinbg iun the right direction which must give you encouragement. You're right, thgthge ladies on this forum are great. I hope you've got better weather than we do for wearing sandles at this time of her lol. Take care. Ann x

  • Hi Ann,

    Thank You for your wishes, I do have a great team the one thing about

    medical care in Australia is it's first class for all, I have had the best of care.

    Also we are near our summer, today is a beautiful 29,

    I live in the blue mountains and with christmas not far and I should be finished cemo I'm going to enjoy this year with my grandchildern.

    Let me be the first to wish you and all the ladies MERRY CHRISTMAS

    Lorraine

  • I really need to wear my glasses when using g this tablet! Lol.

  • Hi Lorraine

    Gosh what a lot you have had to go through what with knee op on top of the cancer - amazing you are still working! I had the skin rash and sore hands with Caelyx, my oncologist said rash was rare side effect but not by what I've seen on this site! As well as moisturiser I had a homeopathic therapist who made up an ointment for me that gave some relief. Also avoiding getting hot helped but I guess that may be difficult in the Australian summer! It did clear up very quickly once I finished with Caelyx so take heart, it's not forever.

    You're right it is an awful illness but the ladies here all make each one of us feel less alone with it, and on down days give us the will to go on fighting. Wishing you a great result from the Caelyx.

    Madeline x

  • HI Madeline,

    Thank you for your reply, the knee (both knees) a I said was booked in before the cancer then the Dr would not do the knees while I was on cemo,

    I was concerned about going in for the op, but it's been great one good knee is better then two bad ones, maybe next year I have the other done.

    First have to bet this monster, I have been lucky with the weather we are just

    starting our summer now it's a a lovely 29 to-day.

    Cheers Lorraine xx

  • HI Lorraine and welcome to the site. The rash must be hard for you at present since I understand Australia is quite warm now. Some one one here mentioned Aveeno Cream to help with dryness. I know there is some special cream your onc can prescribe so dont be slow in asking him or your team. I think your results are very promising and you must be indeed happy with them at the moment. OC is devastating but we learn to live with it. At times we get fed up but we just keep on hoping for something to beat it all into oblivion, I agree there are fantastic ladies on this site and we also have a few gents who are supportive of their partners or wives. Wishing you well

  • Hi Suzuki,

    Thank you for the welcome as I said I had read this site for the last 3 years

    and decided to post.

    Yes the rash was hard ,I used Aveeno plus MooGOO full cream moisturiser,

    steroid cream calledcortic-ds ,

    plus I was given steroid before cemo through my port this really did help so I think the clinic will do the same this time,

    I agree with you the men on the site are great supporting their partners .

    Cheers for now Lorraine xx

  • Hi Lorraine nice to meet you! I had the same reactions to Caelyx but no hair loss. The rash was very unpleasant and went under my boobs too. Onc. prescribed Pyridoxine (vit B6), which helped a lot. Went into remission for 7 months, but unfortunately the beast is back again. Onward and upwards - played golf today and really enjoyed myself. Stay strong.

    Lynne x

  • Hi

    Lynne nice to meet you

    I also have no hair lose this time, lost it twice before

    I had red hair all my life when it grow back it was totally grey, it looks like it 's going to stay so think I might go and have a colour put into it.

    Sorry to hear the beast is back but in the famous words of a lady I've meet ONWARD AND UPWARDS

    Cheers Lorraine xx

  • Hi Lorraine......I am so sorry for all that you're going through. It sounds like you are coping very well.....I give you a lot of credit! Try to stay positive, and keep reading what all these lovely ladies have to say. I know I've gained so much information and encouragement from everyone on this site.

    By the way.....I've been to your beautiful country (I live in the US), and I just loved my visit there.

    I wish you well, and the very best to you and your family...........JudyV

  • Hi Judy,

    Thank you for your reply, I'm coping all right I have my days.sometimes it's hard to stay positive as it is with most ladies but it is good to read the encouragement on this site,

    Glad you had a nice visit, it is a beautiful country,

    I live in the blue mountains NSW, we also go to the coast when we can ,

    Having caelyx every 4 weeks we can now manage to go up for a few days it was hard when I had cemo every week,

    I have been to US quite a few years ago now but had a great time,

    Cheers Lorraine

  • Wow. Well done you for keeping up with work too. It is crap isn't it. I'm platinum resistant too. One bonus of coming into summer in oz being able to wear sandals. Keep strong and hope your symptoms improve xxx

  • HI leeds,

    Thank you for replying,

    I manage to go to work 1or 2 days a week, I retired a few years ago

    I find going to work keeps me grounded, my boss Travor is great, he has said come when you feel well or not, I've manage to go most days with the caelyx I have felt better most day then when I was on carbo.

    You are platinum resistant now ? so what will you try.

    here comes summer, to day was a lovely 29

    Cheers Lorraine xx

    Hope your Onc finds the right cemo for you

  • I am on Rotterdam regime or rotten ham as I like to call it. Cisplatin and etoposide. I can only dream of 29 degrees. The heating has been on for the last week. But we can't complain (well we can and we do, but I won't). It has been a lovely summer and balmy September. I was still sitting on my day bed last week but now covered up for winter. Complaining may well change if any of the Aussie contingency start rubbing our noses in it once the snow sets in. Xxx

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