Now odd caelyx

Had a meeting with my consultant who after two trials of caelyx, said "its not working" There is nothing much else we can offer except weekly Taxol and the response will be low." I had only two doses because i got a serious sepsis infection in my PICC line.I was in hospital for 10 days so I had two caelyx doses basically 7 weeks apart. How can they say it was working too slowly ? She has now referred me to another consultant who is 10 miles from where I live, I was trying to travel( and had been for 18 months) , 80 miles each way to see the consultant. I am having the ascites drained next week and then the week after I see the new guy so am praying for some assistance and support from him. I just want to sit and cry all day. I feel so awful and my daughter is having a new baby in September. I so want to see her.

Has anyone had weekly Taxol? Has any one any good news please after Avastin And caelyx failed?

11 Replies

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  • I'm so sorry you are having a difficult time. Hopefully when you meet with the new consultant you will get a new plan and be back on your way. I am based in the US so am not familiar enough with your medical system to offer good advice about your consultant. I'm sure many sisters much more knowledgeable will I will be by soon to give you advice. All I can say is I had weekly Taxol (combined with Carbo every three weeky) for my initial treatment and I am now in remission. I know the ladies will be able to weigh in on the caelyx as well. But it does sound like a new dr and a fresh look/new plan is needed. I don't think any chemo can be evaluated after just two cycles 7 weeks apart. Something doesn't sound right. Hang in there, this is just a temporary setback. Much love and prayers to you! 🌸🌼🌺

  • I hope that you get what you need from the new consultant and I wish you lots of love and best wishes for finding a way forward.

    If the new one doesn't come good, please ask if you can have a second opinion. Not sure what your rights are here but someone will know.

    Xxx

  • Oh Steffi I wish I could help you but do not have experience of these two yet. I was so sad to read that you are so sad and it sounds as though you have been through so much already.

    Have you thought about asking for a second opinion? And would it be any easier to try and be closer for a while so that you are travelling so much. As this might be wearing you out.

    I really hope your new contact can help and all I can suggest is to try and relax before you see him, when I am sad or anxious, I listen to meditation recordings that hugely help me. Maybe it is not your thing...but it can really help, at least you might feel calmer and more hopeful until your visit next week...

    Here is link to one I listen to every day and it's free. So much love to you xxx

  • I love this, thank you so much

  • Sorry to hear that you are having tough times. It's my daughters that keep me going. I can't help with the chemo except to say I found caelyx a relatively easy one for side effects. I hope the new consultant has something positive to suggest.

  • I had weekly taxol but had carboplatin with it for 17 weeks. Main side effects were upset the gut and queasiness, also fatigue and pins and needles in hands and feet. None were extreme though as weeks went by think side effect increased (as you'd expect) Think it can take a while to see results too. I'm sorry you're having a hard time and hope you can hang in there and feel as comfortable as possible. xx

  • Hi, I had caelyx for 6 months and managed the whole treatment I found that it went up at first which was scary but 3 or 4 it started to come down, it went down 10 points after I finished the treatment it seem to be a slow burner, maybe you can talk it over with your new oncologist, I'm now on Carboplin and Caelyx I did try taxol it did not work for me but remember we are all different and some ladies on this site have had success with single Taxol. This could be a good thing going to a second option I hope you get started on a new treatment plain soon..my best wishes Lorraine xx💙

  • Hi steffi, I had weekly taxol for eighteen weeks and it worked for me for a while. I am now on tamoxifen tablets, so hoping these are working, will find out Friday. I had calyx about three time but it didn't work for me so was was stopped after third session. I finished taxol in December, but in March my ca125 had slightly risen to 19. So my oncologist put me on hormone tablets. Good luck with your treatment and hope it works for you. Also avastin didn't work for me. Xxx Julie

  • Hi Steffi

    So sorry to hear this. I am on weekly taxol as resistant to carboplatin. This is my second round of treatment and was started within a year of my diagnosis. I am also in the Octopus Trial. I have to say I have found the weekly taxol more tolerable, so far no constipation, neuropathy not increased, no tinnitus, only a little nausea and this so far has been easily controlled with meds. I have just had number 11 of 18 so a way to go, but CA125 has gone down from 8,000 to 200. A good trend.

    Good luck with new medic, but as the other ladies say you may need to ask for a second opinion.

    Tx

  • So sorry to hear this news. I agree with you regarding the caelix, 7 weeks apart.. maybe they shold do more frequently to really see if it's working or not. Glad you're seeing another doctor

  • I have had weekly taxol and it worked for me in conjunction with carboplatin. Keep up the good work and let us know how you are doing.

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