Is anyone on taxol long term-almost as a maintenance dose? I am having 8 cycles, and have had relativley encouraging response (stability in liver, shrinkage in nodes and pleura). I am hoping to continue with it,to see if it can maintain stability-in the past when we have reached this stage with other chemos, we try to hold things stable with herceptin alone, but this is never enough, and progression begins again. I’m sure there is an argument to be made for staying on chemo (perhaps at lower dosages), for longer than the conventional 6-8 cycles (or the equivalent reduced weekly dose).But my onc isn’t convinced. I know this is done in other countries, am happy to be a bit of a guinea pig, provided all the functions and bloods are coping. So theoretically don’t see a problem-would love to know if anyone is using this, or any other chemo-in this way.
Interesting that you should bring this up. I am just completing 18 weekly tax, I have had 16. One of my friends is having 6 conventional tax and then she is going onto weekly ones. Her onc is suggesting keeping her on that for quite a while. We are in the midlands.
I have found weekly tax ok, but getting a bit tired now. Although I had this regimne straight after 6 FEC so that would probably have something to do with fatigue.
x sarah
Thanks so much Sarah-this is exactly what I was hoping to hear. I suspect that I may be able to persuade him-I can see his point of view, in that he belives in using chemos as sparingly as possible, rather than going for the aggressive approach. Although I would love to see further shrinkage, I would happily settle for stabilty-we’ve tried 4 chemos so far, and I worry about running out of options. So to stop using something rather than try to get as much benefit as possible from it, just doesn’t feel right. It would be fine if there was some kind of confidence that when needed again, that we could reuse it succesfully-but not sure that this would be the case.
My onc has gone in all guns balzing1 I was dx with primary and mets at the same time, May last year. its my anniversary today!
I am also on extamethasane and zometa and herceptin. Hoping for an mx soon. I have stabalised on tax after amazing results on FEC. Thats why he has added a hormone to see if he cant chivvy things along
x sarah
Hi Sarah and Elaine
I hope you don’t mind me butting in on this thread as I can’t offer any assistance, but wondered if you could help me.
I was DX 8 weeks ago with Invasive ductal BC but it had spread into my neck (quite a noticable lump). My notes say I have Metasised BC and that I am triple negative.
Anyhow here is my question. I’m on weekly taxol with avastin (I’ve done 5 out of 9) The lump on my neck has reduced significantly which is good but what happens next.
In this situation do they keep you on chemo forever or do they give you a break and see what happens? Do you think surgery is still an option? I know I need to speak to my Oncologist but its only just hit me that this is all long term stuff.
Thank you for any advice you can give me - I just feel like I can’t plan anything.
All the best to you both
Hi Linda. We are all different-as are our oncs, so treatment will vary accordingly. But the likelihood is that once you have completed the treatment, he will stop and see if you can maintain stability. At this stage, sooner or later there will be further progression, and when this happens, another chemo will be tried. In other words, you won’t necessaarily be on chemo all the time-but the breaks you get may only last a few months.It’s a bit of a delicate juggling act. Using enough to help us, but not using so much that we exhaust all of our options too quickly. My greatest fear is that I actually run out of chemos which work for me (so far 2 haven’t worked-capecitabine and vinoralbine). This is one of the reasons that my onc favours the softly, softly approach-so that we can keep something in reserve for as long as possible.
I’m not surprised that you feel you can’t plan anything. It’s quite difficult to do so. I rarely look more than a few weeks ahead, and wouldn’t dream of planning a holiday, for example, further than a month or two in advance. So much can change so quickly, that personally I’m happier taking a day at a time-it’s a hard lesson to learn, but for me it’s the only practical way to live. Even now, I find looking to a future too far distant (one which I won’t have!), is just too upsetting. Rather I’ve aimed to accept my diagnosis (although I’ve never asked for a prognosis), and live as best I can within the constraints it brings. Some people prefer to live in denial, feeling that they may one day be cured, others will rant and rage about how unfair it all is-and even sometimes we hear of people saying that their lives have changed for the better. Whatever road you find most comfortable, will take some working out from you-and nobody can really tell you how to move forward. But rest assured, you will find a way-let’s face it, the alternative doesn’t bear thinking about! Good luck-and hope the treatment helps you.
Elaine
Thank you so much for your reply. Sorry I didn’t reply straight away but I’ve just had friends around and have been asked to be a god mother!! Although chuffed to bits, I can’t help but think what use I’ll be to the poor baby anyhow…
I guess deep down, what you have told me is what I thought, its just so hard not to be in control of your own life (however long that is for). I feel like the balance between being positive and accepting the reality of it all, is a hard balancing act but like you say I’ll find my own way of dealing with things.
Thank you again for taking time out to reply
All the best for keeping everything stable
Linda
Linda, in time, you will find a way forward. No matter how scared we are, the will to survive is strong, and most of us find some way of coping-which is as well, otherwise the cancer wins yet another battle. I’ll probably be criticised for suggesting that cancer is a battle (it’s not politically correct to use such terminology, apparently). But to my mind, it is indeed a battle, if not a war, and the most important one I will ever face on a personal basis. I have to say that nonetheless life is still good. I’m at the stage of not thinking about the disease as soon as I awake-nor is it the last thing in my mind before drifting off to sleep.
The physical demands of continual treatment can be wearing-to say nothing of time connsuming. But again,we find a way of dealing with this-and I’ll do so until such time as I run out of options, or the cancer kills me.Do feel free to pm me if you want to talk further.
hi
I am having 18 weekly taxane and have had 3. Seems a lot more tolerable than EC x 6 which was awful last summer. Is weekly taxane cumulative as feel tired on day but otherwise fine. Did you take B vits for neurpathy as heard helps. Did you lose hair ?
I was hoping would not as only had for a month in past 11 months.
Thans for answers
Hope 15
Joanna x
Hi Joanna
I’ve now had 6 weekly Taxol and Ses were minimal in week 1-3. The next 3 seemed harder - more fatigue, more aches and pains, bloody nose, horrible taste, mild nausea - HOWEVER all have been manageable.
As for hair loss - I still have a full head of hair althoughh more and more strands fall out each day. Fortunately I have a lot of thick hair. Having said this a lady that is on this forum who is a week or two ahead of me unfortunately lost her hair.
I wish you well and hope we can keep this thread moving
Take care
Linda
x
Thanks Linda
I am supposed to be on 18 weekly taxol 3 of every 4 weeks. Have had 3 and feel ok but tired. Am praying keep hair as only had for a month or so after FEC x 6 and a v fast recurrence.
Best wishes
Joanna
Hello taxol ladies
Just wanted to say hello and hope everyone is doing well.
Had my chemo yesterday, having had a week off (lovely) and have woken up to a face that looks like a bright red tomato!
Planning on going to a BBQ this weekend and have said I’m going however rough I might feel - I can always hide under my sombrero!
Joanna - have you had any other SEs yet - you mentioned tiredness last time - I’m keeping my fingers crossed for you.
Elaine - your last post to me was so useful. I read it over and over again and I think I’ve moved into a new place - its a battle that I can fight - its just bloody inconvenient! How is your treatment going? When will you knwo if there’s any further shrinkage
Sarah - have you got a date for your MX or will you not get it until you’ve finished your chemo? I’m triple negative so I can’t have Herceptin but am on avastin - not sure if I carry on with this after this round of chemo finishes - will have to wait and see.
Anyhow - off shopping with my bright red face - need to do things in the morning as I tend to deteriorate in the afternoon
Hugs to you all
Linda
x
No date for mx, now I am on Capectine and lapatinab because tax didnt give the results we wanted. So, thats more chemo 8-(
Dear Linda
No other side effects from taxol ( paclitaxol) but losing quite a lot of hair ( 4 of 18 so far ) and am hoping just thins but do not lose as only had hair for 2 months in past year !
I have got cracking finger tips but trying to mositurise
Thanks
Hope 15
Hi Hope
Glad to hear you’re not suffereing with any other SEs - lets hope it stays this way. I will really keep my fingers crossed for you that you don’t lose your hair - that would seem so unfair on you.
My fingertips have felt tender but no splitting.
My main Se is the aches and pains, but I just visualise that as the little chemo monster munching its way around my body and the more it munches the better!!
Anyhow must get myself into action, otherwise I will be sat on my bottom all day.
Do keep in touch
Linda
x
Hi all taxol ladies again
I have now had 6 of 18 weekly paclitacxel and still have hair although more coming out each day it seems. Has anyone on 18 weeks treatment kept hair ?
The SE are minimal aches and pains in muscles but zometa se much worse I found for flu symptoms.
hope 15
Hi, I have had eight with four more to go and still have quite a bit of hair, albeit very grey and thin on top. Not bald yet, although it does come out daily.
Hi, I was loosing my hair by the handful very early on so shaved it off. It is still growing a bit but no where near hair I could call proper hair!! I have now just had number 10 and good ct/mri results.
So, my consultant has told me whilst it is working I am staying on weekly taxol with the avastin. Anyone else on ongoing treatment rather than a set number??
Hugs to all,
Sadie Xx Xx
Hello all, help! I have bone and liver mets, capecitabine didn’t work as I had a rare SE so they took me off it, I am starting taxol on a weekly basis on Friday. Think I can handle any SE (???) but am dreading the hair loss again as I have just got my hair back after last years FEC-T. Have ready through all of your comments and found them quite encouraging and glad I found this thread, has anyone got any positive comments to cheer me up? Please? xxx
Hi wannee I just wanted to let u know I’m on 3 weekly taxol with carboplatatin I’ve just had my scan after 2 treatments and my scan showed I’ve a 70 percent reduction on one side and 50 on the other I have lung mets i know I’m on diff to you and yes lost my hair to and I only had it a yr but it will grow back we just had to zap these buggers gd luck Laura