DOWN TO-DAY CAELYX NOT WORKING NEED ADVICE

Hi Ladies,

Went to the clinic to-day I've had 5 of the 6 caelyx the last one this week.

my 125c is still 128 and I was that the last one is not likely to bring it down to normal.

so will now have a break over Christmas, I'm to go for a heart test as caelyx can be hard on the heart.

Then my team will decide if I can take caelyx again.

I did ask the question maybe I should have not, how series and was told about a year,

Came home and had a good cry,still crying.

So I'm turning to you ladies who have been in this position and what were you offered after caelyx and the results.

It always helps to turn to all you ladies thank you.

Lorraine XX

21 Replies

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  • Hi Lorraine

    I have just finished gem/carbo for a recurrence and that hasn't worked as well as hoped which was a real blow because the carbo/taxol worked so well when first diagnosed. I am now going on to weekly taxol in January. I wasn't brave enough to ask 'THE QUESTION'. Just remember that we are all individual and the doctors don't really know for sure and new drugs are coming through all the time. Try and have a good Christmas and I hope things go better for you in 2017. Love and hugs Chris xx

  • Thank you Chris I'm feeling a bit better to-day.

    My youngest daughter is a full glass person and always makes me feel better'

    she remained me that 2 years ago I was told it was it was terminal and I'm still here 2 years later.

    I hope with all my heart that taxol will be the one for you.

    Merry Christmas to you and your family from down under

    Lorraine xx

  • There are lots of new drugs coming out of trials and also many on-going trials so there's bound to be something for you. The answer, "about a year," probably means without further treatment.

    So do enjoy Christmas, treatment free, and there's bound to be something you can try in 2017.

    All the best!

    Helen

  • Hi Helen,

    Thank you for your reply, I'm feeling a bit more hopeful to-day my youngest daughter is always the full glass person in the family,after talking to her I feel better.

    The same thing after being on this site and the feed back the ladies give is so helpful'

    So thank you again Helen

    Merry Christmas to you and your family from down under

    Lorraine xx

  • Hi Lorraine. Can't offer any advice but do want to send you a bid hug and hope things improve for you xxx Kathy xxx

  • HI katmal,

    Thank you for your best wishes and the big hug, I hope all goes well for you also.

    Merry Christmas to you and your family from down under.

    Lorraine xxoo

  • After Caelyx I went onto weekly taxol, it has had she good results, there also trials, maybe ask your oncologist would you fit the criteria for any trials, sorry I don't know,enough about them to offer any advise on it, wishing you the very best, take care

    Karen

    Xx

  • Hi KMAllan,

    Thank you for your reply as I said my oncologist is sending me for a heart test to see if she will give me caelyx again.

    I don't won't caelyx again so when I go back I will ask her about taxol.

    The only good thing about caelyx it was every 4 weeks not weekly.

    I have lost a bit of faith in my oncologist I feel like my treatment is one size fits all and when this is finished I'll be told that is it.

    She never says we will fight this to the end or that there are many option, we need to hear this to give as some hope.

    In the new year I would like to speak to another oncologist just to see the options.

    Glad taxol has given you good results and hope it only gets better.

    Cheers Lorraine xx

    Merry Christmas to you and your loved ones from down under

  • Sending hugs Lorraine, xx

  • Thank you Millie,

    For the hugs feeling a bit better to -day.

    Cheers Lorraine.xx

    Merry Christmas to your and loved ones from down under

  • Hi Lorraine.

    Sorry you are feeling down and sending a big Yorkshire hug. 💜.

    I don't understand why your oncologist would put you back on caelyx if it didn't work so you think you should definitely should go for a second opinion. You have nothing to lose and it will give you peace of mind. We all need hope and if you don't have faith in the team treating you, where is that hope?! I would maybe start the ball rolling and contact another team/ oncologist before Christmas though, as it may take a few weeks to get an appointment. If you then know you have an appointment already booked for January you can enjoy Christmas all the more.

    Let us know how you get on but in the meantime have some quality time and treats with your lovely positive daughter. 💜

    Love and have hugs.

    M.B. x

  • Hi M.B.

    Thank you for your reply,

    I have made a appointment with my DR, you have to get a referral from a GP to a go to a oncologist first.

    Is this the same in US? I'm in Australia so as soon as I've seen him I will.

    I have 2 daughters the youngest as I said is full glass and will talk abut my cancer,

    My other daughter does not handle it well it's the elephant in the room.

    I will let you know when I have some news.

    Merry Christmas you and your loved ones Lorraine xx

  • Hi again MUmmybear59,

    I said US should have been England, I watch a show call escape to the county,

    England has beautiful county towns.

    Best wishes

    Lorraine xx

  • Hi again Lorraine.

    In the UK you can ask your GP to refer you for a second opinion OR you can ask your current oncologist. They are usually happy to refer you. On my first recurrence I had the option of two different treatments and I couldn't decide, so my oncologist asked if I would like to see another oncologist in a different health authority to help me decide. I did so and ended up back at my own oncologist with the treatment he had veered towards. I did however feel happier about my decision after the second opinion. Sometimes second opinions can throw up complete different options though so hopefully this will be the case for you. And either way you will at least be reassured that everything is being done to help you.

    Hope you get referred soon and have a lovely Christmas xxx

  • Hi, I'm sorry this has happened to you. I am on Caelyx and have just finished 5 out of 6 my ca125 dropped after the first 3 my midway scan showed the disease was no longer growing and the fluid had gone. Since then my ca125 has continued to rise which bothered me but my oncologist said this could happen for a number of reasons and apparently is common when on Caelyx and can drop after the treatment is over, I am still on track for number 6 in a few weeks with a follow up scan 3 weeks later. Can you ask for a scan to see what's happening? I also went for a heart scan 2weeks ago to make sure all in order and everything was okay.

    I would ask for a second opinion.

    Big hugs xxx

  • Hi Emalou71,

    Thank you for your reply,my story is very similar to yours , Monday will be the 6th I have 2 more 125 results to see .

    I'm hoping my marker will be down.

    I will have a second opinion.

    Hope you also get great news and have a merry Christmas.

    Cheers Lorraine xx

  • Hello. my treatment with caelyx has been stopped as it's not working but I'm starting weekly taxol next week. I was told a year if the caelyx didn't work and so I've been very low but the weekly taxol seems to work well for some people. My CA 125 is over 2000 but it seems to wander up and down now anyway.

  • HI lesleyGreengran,

    I was told a year also so I understand how you feel,

    How many caelyx did you have before it was stopped?

    I have read good result have been make with taxol so

    lets hope it wipes the beast on the head.

    Christmas is only a few weeks away so I'm going to try hard to enjoy my grandchildren' So Lesley Merry Christmas to you and your loved one from down under.

    Lorraine xx

  • Hello. I had four before the CT scan showed it wasn't working and the tumours were growing. Have a good Christmas xx

  • Im in same position as you...I had 4 carbo and caelyx..ca125 169..its not bringing it down..so I switched to just weekly taxol..3 weeks on 1 week off for 6 times..just had 2nd today..after 3rd plus week off and another 3 ill have a scan see whats happening..DONT listen to these prognosis..every body systems different..your not just a stat...im looking into avastin a drug they can add to chemo and stops blood supply to cancer cells....2ndly...clinical trial immunology....went

    to natural path but have to be careful with certain supplements they dont interfer with the chemo...started to juice..organic...listen to nice music..put yourself first...look after you...laugh..find things to laugh at..thats what im trying to do,, I have 2 beautiful grandsons 5 , 7...im fighting for them...

    Pls stay in touch..god bless you and keep you

  • Hi Suellen'

    I went to my GP to-day he has given me a referral to a another oncologist so I will have a second opinion.

    also will ask a lot of questions, I have a list of treatments I would like to know about.

    Like you I have beautiful grandchildren the twin girls are 16 off to the school formal next week.

    Then 2 grandsons 16 and 12.

    One thing about this site is the very sad young families that are effected by this ugly breast.

    I will keep in touch and thank you for your blessings and I wish you the same'

    Cheers Lorraine xx

    Merry Christmas to you and your loved ones from downunder

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