125 going up on Taxol

Hi Ladies, I went to my oncologist to-day to get the results of my weekly Taxol, I've had 3 so far but was disappointed to-day as it had gone up70 points now 370, this is the highest since arfter I had my operation in the begin 2/12 years ago. My oncologist said she would give me 3 more before she would say it was not working as she said it can go up then come down, I still left depressed,Has any one had that experience on Taxol where it's gone up and then reach a positive result. Would love to hear from you.

Best wishes to all Lorraine xx

16 Replies

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  • Hi Lorraine. I can't comment on the weekly Taxol as that's my next line of treatment, but just wanted to say that I'm thinking of you and wishing for a fall in ca125 for you. The Consultant must be hopeful of a response or she would probably have stopped treatment??

    I can totally understand you feeling depressed, those numbers have so much to answer for, but try not to dwell on it too much (practically impossible). Fingers (and toes) crossed for positive readings next time. Take care. Love Ali xx

  • Hi Alkay, Thank you for your reply, after a good nights sleep I'm feeling a bit better.

    Best wishes ..Lorraine xx

  • Hi Lorraine, Yes, mine went up after 2nd or 3rd infusion to over 1100 then plunged down and kept going down. So, yes, this can happen and the results can still be good. Currently I am NED 8 months after first line treatment.

  • Hi Tesla Thank you so much I needed to hear a good outcome and I hope yours continues.best wishes Lorraine xx

  • Me too Lorraine! For my part, it feels great to share this information to help any one who comes here for support! You are not alone.

    Love, T

  • Hi Tesla , Had my Taxol on Monday and it was 50gms I did not get the chance to talk to my oncologist about if the dose was low, do you know the amount you received weekly? Sending you my best wishing, hope you are keeping well.

    ..Lorraine xx

  • Hi there. No, I don't know the dosage, I could find out, but it would not apply to another patient. I do know it's a standard, documented protocol where dosage depends on your weight, body mass and your skin surface area. Which is VERY interesting because one woman's 140 lbs can have a completely different surface area than another! This is important. A muscular, slender woman can weigh far more yet have a much smaller surface area. It is my understanding that surface area should affect dosage amount. Tesla

  • Hi Tesla, Thank you for your reply, I rang my clinical nurse to-day she is great always gets back to you, I asked her if she would find out if my dose for Taxol is correct, she came back and told me I'm on Docetoxel and this is not the same as Taxol and the dose is correct. I'm ok now .

    best wishes Tesla ..Lorraine xx

  • Have never had it weekly. Just wanted to wish you all the best for the next three and hopefully, like Tesla, it will go back down again. Ann xx

  • Thank you Ann nice to hear from you and to get your wishes, I feel a bit better to-day will have 3 more then my oncologist will give new 125 and scan,

    Best wishes Ann...Lorraine xx

  • My CA125 is gradually going up while I'm on weekly taxol. A CT scan showed that some tumours are shrinking though so I've stayed on it. I presume you'll have a scan if it isn't coming down? I've been told there are other options if I stop it. I've just had the 5th round of 3 doses.

  • Ni Lesley, Thank you for your reply yes my oncologist said she would give me 3 more then look at it again with a scan so I'm hoping it goes down.

    I hope all goes well with you and yes my oncologist has suggested Caelyx again as a other option if this does not work

    All the best Lesley.. Lorraine xx.

  • HI Lesley, Do you know how much taxol you are having ? mine is 50gMS each time.

    I think it is too low a dose when i went in on Friday I asked my oncologist the amount she was giving me and she said 75 so I thought I must have made a mistake but when I went on Monday for my chemo it was 50 .

    I don't see her now for 3 weeks and a bit upset that I could be having a low dose till then, I'll try and call in to-day just wondering if anyone else is on this low dose with results. Thanks Lesley... keep well Lorraine xx

  • I have 108mg each time, so your dose does sound low. Can you contact your team and get some answers? I've heard of other people having 50mg though.

  • Hi Lesley, Thank you for replying I did finally call my clinic nurse and she was good, found out my chemo is called Docetaxel she said it should not be called Taxol as same people call it, as they are different and that I am getting the right dose. I looked it up and it is 100 gms over 3 weeks I'm getting 150 over 3 weeks. one thing I know I'm losing my hair again ( 3rd time ) this time I'm going to buy a wig, we are coming into our winter so it will be comfortable.

    Thank again Lesley I need to chill out and not get so stressed out.

    best wishes Lorraine xx

  • Caelyx didn't work for me but my oncologist mentioned two other drugs so there are more options now.

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