thank you so much for letting me know! It's really motivating to hear that the treatment has helped you.
Your cough never returned for years? Does that mean your metastases on your lung diminished as well?
I am still waiting for the results of my scan, midway through treatment now. I am feeling ok so I am really hopeful.
All the best wishes,
Thanks for your reply. I don't come on here very often either, hence the delay in replying.
Would really love to know more about how you cope with the ileostomy after this time. Still early days for me, about 8 weeks, currently have increased watery output for 24 hours and can't pinpoint why.
have you started your treatment yet? If yes what is it and how are you tolerating it?
It seems like I am doing ok on Paxitaxol. Nearly half way through and cough is less persistent. Going to have another scan in a few weeks time, which will tell more accurately of what's happening inside me.
Good luck to the other woman- sorry can't recall your name. I am feeling quite blessed that I am realatively content and in no pain, just the fatigue. It is just so unpredictable of what's going to happen, we have to live in hope!
This reply isn't about Taxol, I have never been on it and don't know what it is. However, I just wanted to say that you aren't the only one to have an ileostomy because of secondary breast cancer around the small intestine. I also had this done, but it was four years ago. I had the same symptoms as you, but as it was twenty years since my primary, it never entered my head that the problem could be cancer-related. So that was how my mets came to light. Mets in my peritoneum had trapped my bowel. Later it was discovered that I had bone mets, that had most likely been there before those in the peritoneum. I am still here four years later and none of the mets were removed surgically as they were more like threads than lumps. I was given FEC chemotherapy and since then have been on denosumab and Anastrozole and have been "stable". I do feel resentful about the ileostomy as I hadn't got anything wrong with my bowel, but it did save my life and so I was very lucky. I did have to ring 999, as my surgery were dallying around doing various blood-tests and waiting for the results of those, even though I couldn't keep anything down. Anyway, I just want you to know I'm thinking about you (I don't post very often as I don't have much to report) and to let you know that life does go on after an ileostomy, even if not the same as before.
Sorry to read you have had progression. I was put on taxol when cape failed. I had progression to my liver in October 2017. Had 10 months cape then 10 weekly taxol. I was told it had worked for me so fingers crossed it work really well for you.
I did cold cap when on that treatment. It did not work 100% but I still ended up with a good hair covering .
Good luck for Thursday.
Hi Nickova and Mishy
I'm starting weekly taxol on Thursday 21st March. Was dx with primary BC in September 2014. Had a mastectomy, chemo, rads and several reconstruction ops.
Dx with bone mets in December 2017 - vertebra, pubic bone and sacrum. I was on letrozole, palbociclib, triptorelin and denosumab for a year with quarterly scans. My October 2018 scan showed activity in the vertebra so I had cyberknife and then waited til February 2019 for scan to see if it worked.
February scan showed multiple tumours in my abdomen around my small intestine - I'd been having horrendous stomach pain, nausea, vomiting and constipation for a month before the scan but medics just said it was a tummy bug and wait for the scan!
Ended up with ileostomy. 7 tumours in total, they surgically removed 3 or 4 and the rest will be tackled with chemo.
So start paclitaxol on Thursday for as long as it works.
Watch this space xxx
Hi Nicova I'm also recently diagnosed with nodes in lungs (3 weeks ago) really small so early stage sbc like you I haven't started any treatment yet as I had a chest infection on diagnosis day so couldn't have treatment he had mentioned weekly but I'm allergic to the taxanes so I'm not sure what he will give in place of palitaxel I was only 12 months out from treatment for primary low risk for recurrence so like you I'm absolutely shocked and devastated I'm keen to start treatment as I'm scared leaving it will be catastrophic for me I'm pleased you are managing on treatment
I am a total newcomer to both using a forum as this and to secondary breast cancer.
It was really inspiring reading your comments. But I am not quite sure how this forum works. I hope this is visible to everyone who responded to the 'anyone on taxol' group.
I was only diagnosed with primary breast cancer a year ago, had a mastectomy, Chemo and radiotherapy. Only finished Chemo 6 month ago and a chest X-ray showed metastasis in the lungs. CT scan revealed it's also in my liver. Apparently still small and in early stage.
My oncologist put me on 18 weekly session with paclitaxel, I had only 3 so far, too early to say if it works. And at the moment still feeling reasonably ok, just a persistent cough, the usual fatigue and of course the emotional stress of the diagnosis I am only starting to get in terms with.
Will see my oncologist tomorrow again and find out what the overall plan is. It feels all a bit uncertain.
Wishing you all good luck with your treatments,
Good that you were had a liver resection. This has never been mentioned/offered to me but maybe that is because I have spread in bones as well as liver.
You are right about when things fail. Somehow we learnto accept and then bounce back. It is a rollercoaster.
Lorraine, I’m on Fulvestrant at the moment and have been for about a year. I had a liver resection done last April which knocked my liver mets out (I currently don’t have any visible on a CT scan but that’s not to say they aren’t there! Just too small to pick up probably). I expect it to fail at some point in the near future mainly because this is about my 7th line of treatment so I’m unlikely to get such a long run out of it, we’ll see.
Linda, yes, it’s a blow when a treatment fails. I sailed along nicely for about 4-5 years on hormonal treatment after my mets were diagnosed and got into that false sense of security that I’d be fine. The first time I had progression (to my liver) hit me so hard I was really close to clinical depression. It didn’t help that at the time my heart failure was getting worse (thanks to FEC). Part of feeling so low was having to face up to the fact that a treatment had failed and then having to deal with a new treatment and all the side effects etc. So I know exactly how you, and everyone else, feels like. Good luck on Tamoxifen though and with the scan results.
Nicky - thanks for your kind words. What treatment are you on now?
Linda - good luck with Tamoxifen and with your results.
Thank you for your kind words. I feel well on just tamoxifen. Dont know how you felt when you a treatment that fails like I did with cape after 10 months it is always in the back of my mind what next. I never used to think about to be honest.
Hope you are keeping well.
Sending all you ladies who have found out in the last few days that Taxol isnt doing its job any longer a big hug. Difficult times but I do hope you all find a treatment that works well for you.
Hi Linda, hope you are doing well on tamoxifen and the scan results are good when you get them.
Hi Lorraine Helen & Vicky
Sorry to read taxol has failed you all. It is awful when a treatment fails and we have to start another one.
I don't post much these days but I do read the comments most days to see how you are all getting along.
At moment I am still on tamoxifen hopefully it is working . Just had my first CT scan after 4 months on it.
Take care .
Hi Helen and Vicky
Sorry to hear your news.
Vicky - we start our journey together and I wish you all the best.
Helen - enjoy your break and good luck with next treatment. Good to hear you lasted a while on Paclitaxol.
I started in 2014 with Tamoxifen for a short while then Letrozole - had bone mets from the beginning. Never had chemo at the start just these hormonal treatments. No progression until end of 2017 then spread to liver. Since then have had Examastane, Capecitabine then Paclitaxol, none of which helped for very long.
I did ask oncologist the other day what else if Eribulin doesn't work and he named two or three other chemos. Only name I remembered was Gemcarbo.
Each change is stressful but we need to keep going.
Hi Lorraine & Vicky
Also joining the paclitaxel failed club! After 28 sessions my scans showed significant progression in the liver so I am having a chemo break for a couple of weeks whilst we decide a way forward. Running out of options now, the choices left are cape, vinorelbine & epirubicin.
I wish you all the best with your treatment on eribulin, I found it very tolerable and managed to get 23 cycles out of it. At least your hair should be Ok, mine just thinned a little. Watch out for numbness in your calves and shins, sometimes I couldn't feel anything below the knee. The chemo buddy eribulin thread has lots of good tips.
Take care of yourselves.
Snap! Found out yesterday taxol hasn't worked for me. Neither did Cape or Faslodex.
Starting Eribulin tomorrow. Nothing seems to be stopping my liver mets.
All the best with your treatment.
The results of my recent CT show that this chemo is no longer working as mets in my liver are progressing again. Next step is Eribulin which I start next week. Not what I hoped for but am hoping Eribulin will work.
I am due to have no 7 today. My onc said I would have 12-18 sessions depending on how I tolerate it. I asked her yesterday what happens after no 18 as I had seen from this site someone ladies are continuing treatment. She said if the treatment was successful I would stop after 18 and have a break and go back onto a hormone treatment as continued treatment could damage the bone marrow.
I also think I will have to have a port fitted before long as they can only use 1 hand and they struggle every week and I'm only 6 down. Concerned with infection risk as I also have a drain fitted for my lung which has just got infected.
It seems never ending at the moment.
Consider checking out acupuncture for your neuropathy. The cancer center I go to in the US has an acupuncturist and a massage therapist so I go to their office and have had tremendous results. It is not covered by insurance but worth every penny to me.
Seven years ago I developed neuropathy on my feet and one year later I discovered acupuncture which took away 90% of the symptoms. YAY.
Now with metastatic breast cancer I am on Taxol.. I started getting neuropathy on my second treatment and set up an acupuncture appointment and he also told me to soak my fingers IN ICE WATER constantly during my treatment. It is hard to do and I only manage five min in and five minutes out of water, but does help prevent the neuropathy along with the treatments during my visits to him. I also put a gel ice pack under my feet with my socks on, to prevent issues to my feet. Still on Taxol and fingers feeling fine this week.
good luck to everyone with scan results this week.i feel comfortable on this thread as we all seem to be going down the same route with tamox, e/e, eribulin. taxol and on and on.i'd like to give everyone a big pat on the back for being so very brave, every time we try a new treatment we jump off a cliff edge and hope to land safely.big hugs to everyone.
Good luck with Tamoxifen. I must admit it is very odd 'just' having a hormone tablet isnt it? I didnt expect to ever get back to that unintrusive type of treatment. I went onto exemestane after I finished Eribulin last year and it made such a differnce not to have regular blood tests and regular oncology appointments or visits to the chemo ward. It 'failed' after 3 or so cycles although that is now possibly incorrect as the liver lesion that it 'failed' to keep in check was removed in my resection and was shown not to be hormone positive so its possible I can revisit exemestane in future (it did keep everything else stable). I'm now on fulvestrant injections which are every 4 weeks and although a bit more of a faff they are still way easier than the treatments I had been on in the previous 4-5 years. I think we all imagine the treatments will just get worse and worse but I hope we helping other ladies to realise that isnt always the case. Enjoy the freedom!