Thank you for the message .
It is good to hear that your treatment is still ongoing and doable . It’s a positive email for me and thank you as it gives me hope !
ps I have plenty of wigs I kept and scarfs!
I have experience of both docetaxel & palictaxel. Diagnosed Dec 2012 de novo SBC with bone mets & nodal disease. Had docetaxel for 6 cycles in Nov 2014 when I had spread to liver, this treatment eliminated the liver mets. Oct 2016 liver mets returned, had eribulin for 23 cycles then paclitaxel for 28 weeks with no break. Didn't bother with cold cap as I have a good range of turbans & wigs and quite like changing my look! After paclitaxel I moved on to epirubicin for 3 cycles & then capecitabine for 13 months. Progression in liver this month has found me back on docetaxel-apparently I can revisit it because I had such a good response the first time and wasn't taken off it because of progression. This will be the 4th time I have lost my hair so getting used to that side effect!! Also I want to mention that I have also had tamoxifen, metronome & exemestane & 18 months on Herceptin & Kadcyla when I was thought to have reverted to HER2 + receptors - I have now gone back to HER2-. All in all, a lot of different treatments in nearly 8 years! I am so grateful to be still here & try & make the most of life albeit in lockdown at the moment.
Take care & I wish you all the best with your treatments.
Hi Angel eyes,
Originally I had Denosumab but then my kidneys blocked and I had surgery x2 .
Now my calcium is far too low for bone treatment and on hold ! I will get there !
I'm a bit frail for cold cap too with leaking wounds etc and still getting over a big operation .
Had chemo yesterday and stomach shrinking so happy 😀 !
Thank you for the reply !
I forgot to add that you need to give time for the Taxol to work.
There are some very good biphosphonates as bone treatments. Will you be having any? I am on Denosumab. I forget what this is: it's not a biphosphonate but something else. This has already promoted 'scarring' on my spine which is apparently a sign of healing, (although sounds awful, doesn't it?)
I worry about my liver more than anything else. I wish it would get to the point where they could ablate or operate on it but I don't think this will happen.
I hope the chemo works for you. Hang in there and do keep in touch. Will you be wearing the cold cap? I am and so far my hair has only thinned a little, making my parting wider. I was expecting that and can cope if this sort of minimal hair loss continues.
Hi Angel eyes ,
Thank you for the reply !
So sorry to hear about what’s happening with you!
I am similar and had very little symptoms and then all the madness begins !
I hope the chemo does what it should and it’s good to know someone else is having similar treatment . My lungs and liver are ok at present but everywhere else it’s spread, yesterday I was told my bones have extensive cancer . I have ascites and my bloods always are problematic ! Hey ho !
Best wishes Moira xxx
Sorry to see you here.
I was diagnosed in 2012 with breast cancer and had a lumpectomy with radiation and Tamoxifen. I had no lymph node involvement but the cancer came back out of the blue in March of this year. I had no symptoms apart from mild nausea which I now know was calcium leaking into my blood. By then it had spread to the liver and bones. I am still shocked - and sometimes feel the game is over before it's begun 😔. I think I have cancer in too many places and wish it was only in the lungs, for instance. I can't help but feel that would give me a better chance. I know the women I meet with lung only mets regard themselves better off than me and are visably shocked when I tell them how much spread is in my body. I wish I could have picked up what I have sooner.
I am on low dose Paxlitaxel and have had nine treatments so far. I am also HER2 positive so get Trastuzumab and Pertuzumab every three weeks. I don't think the hormonal treatments on their own will be/would have been enough. I think my Oncologist needed to 'dampen the fire' of the cancer but chose Paxlitaxel over Docetaxel because I showed a poor performance rating at my initial consultation ( but that's just me). I don't think I would have got away with hormonal treatments only.
I have tolerated Paxlitaxel well, with only loose stools and 'metallic' hot flushes as side effects. I wear the cold cap - and my hair has thinned - but I'm very thankful for the results.
I don't know if my Oncologist will keep me on Paxlitaxel. I am prepared for her to switch to another, harder, chemo but, like I say, I don't know. Everyone's treatment is different and all Oncoligist's are different.
Nicky08 has lots of wise words so it's great that she replied to you.
I hope this helps.
Thank you for the reply !
my original treatment was Denonsunab , Fulvestrant and Palbocicblib in May , but after an operation everything spread .
I did have FEC T 2016 first diagnosis which I believe is part Taxol.
I guess I just want reassurance that I will get some joy from this and some improvements from the rubbish symptoms I have at present . I guess I need a holiday 🙈 .
one down 10 chemo more to go !👊🏻
Hope you are doing ok xxx
Hi Moria, welcome but sorry you have to join us on the secondaries part of the forum, somewhere that none of us want to be.
It seems the current thoughts (or from what I’ve seen over the past year or so since they were first approved by NICE) that most oncologists start off with a ‘gentler’ regime of one of the new inhibitor drugs and a hormone treatment whereas years ago (when I was 1st diagnosed with mets) it could have been chemo or a stand-alone hormone depending on the amount of spread. From what you’ve said about your mets I’d say that you would have probably started on a chemo to hit it hard. Therefore moving onto Taxol now (one of the chemos that would have been used) makes sense. It is a very effective chemo and many ladies with secondaries have had it, although not so many at present (and newly diagnosed because of the current usage of the inhibitor drugs). If you want to find out more about the side effects you can check out the chemotherapy part of the main forum, the SEs are the same for primary as well as secondary BC and lots of primary ladies have Taxol still. Some secondary ladies/gents have had it so you may get some answers on this part of the forum. I’ll try and find an old thread (as I said there’s not so many SBC People on it right now so it’s not very active) and move it up to the front pages of the section it’s in.
Good luck and I hope it works well for you with minimal side effects.
ps I tried to find a long Paclitaxel/Taxolthread with lots of info on it but couldn’t. There’s a few shorter ones which you could look at if you look through the pages of both sections in the Living with Secondary BCpart if this forum.
Hi all !
My name is Moira.
I am new to this forum.
I am recently diagnosed lobular (May)secondaries spread to ovaries , peritoneum bowel and bones .
Originally for 1.5 weeks I had Ibrance but my kidneys blocked x 2 operations and I became very unwell so things escalated. Now as a matter of urgency I am on weekly Taxol to shrink all tumours ! Has any one else had good results from Taxol to slow things down and get me some quality time and normality which is proving difficult at the moment ! Thank you for any responses .