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Anyone on Taxol

105 REPLIES 105
Member

Re: Anyone on Taxol

Hello Riversidedawn,

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.

Hugs, Windflower

Member

Re: Anyone on Taxol

Morning Riversidedawn

 

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.  

 

Linda 

Member

Re: Anyone on Taxol

oh poor you, you've really been through the mill. Hope taxol works for you, Good luck on Thursday.

Ramade

Community Champion

Re: Anyone on Taxol

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

Member

Re: Anyone on Taxol

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 

Member

Re: Anyone on Taxol

Hi everyone,

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,

 

Nickova

 

 

Member

Re: Anyone on Taxol

Hi Nicky

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.

 

Take care.

 

Lorraine x

Community Champion

Re: Anyone on Taxol

Hi ladies

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 x

Member

Re: Anyone on Taxol

Nicky - thanks for your kind words. What treatment are you on now?

 

Linda - good luck with Tamoxifen and with your results.

Lorraine xxx

 

Member

Re: Anyone on Taxol

Hi Nicky

 

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.

 

Linda

Community Champion

Re: Anyone on Taxol

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.

Nicky xx

Member

Re: Anyone on Taxol

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 .

 

Linda

Member

Re: Anyone on Taxol

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.

Take care.

 

Lorraine x

 

 

 

 

 

Member

Re: Anyone on Taxol

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.

Helen x 

Member

Re: Anyone on Taxol

Hi Lorraine 

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. 

Vicky

 

Member

Re: Anyone on Taxol

Hi Ladies

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.

 

Best wishes.

 

Lorraine

Member

Re: Anyone on Taxol

Hi Vicky77
Thanks for your reply. My oncologist said my treatment would be ongoing for so long as it worked. Previous scan showed it was. Not sure this time just have a bad feeling.
If not then not sure what would be next although oncologist said were other chemos. It is quite gruelling week after week. Takes over everything. At least my port seems to be settling in. Hope your lung sorts itself out. We just need to keep plugging away.

Lxx
Member

Re: Anyone on Taxol

Hi Lorraine 

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. 

Member

Re: Anyone on Taxol

Hi Helen
Thanks for your reply. Just advice from chemo nurses to say paint with dark nail varnish.
Have had a few issues over past week. A dull ache in side in liver area. My tumour markers are beginning to rise again. Had CT last Saturday but have to wait for results until 19 February which is first appointment I could get!!! I had a portacath fitted two days ago as vains not good. Apart from that am doing ok. Still managing to work three days.
I have now had 19 weekly sessions and had a week here and there off for flu jab and Xmas. Are your treatments like mine ongoing?
Lorraine x
Member

Re: Anyone on Taxol

Hi Lorraine
Sorry to hear that you are having nail problems. Weirdly enough I was thinking that both my finger & toenails were doing ok, growing well and surprisingly strong. I did coat them in nail strengthener at the beginning of my Taxol sessions so I don't know if that helped. I don't bother now as l am on no.26 session tomorrow & they seem ok. Has your onc or nurse ( if you have the luxury of a secondary nurse, I don't) suggested anything to help? Are you doing ok otherwise? You must have had quite a few sessions by now.
Helen x
Member

Re: Anyone on Taxol

Hi Helen

Just wondering if treatment is affecting your nails. Am having issues with fingernails and toenails.

Lorraine x

Member

Re: Anyone on Taxol

Hi everyone
So today is my 6 year cancerversary! 6 with bone mets and last 4 with liver mets. I am having Taxol session 22 tomorrow (weekly since June with the odd week off). Pleased to say that my neuropathy has lessened, due to ice packs on my feet for last 4 sessions, so continuing.
Hope you're all doing well with treatments, keep smiling 😊and hope you have a peaceful Christmas. Take care.
Helen x
Member

Re: Anyone on Taxol

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. 

Sallysue

Member

Re: Anyone on Taxol

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. 

Mary Ann

 

 

Member

Re: Anyone on Taxol

Morning Lorraine

Me and you must have had spread to liver at same time. October 2017. I was originally diagnoised with breast cancer and bone mets at same time August 2009.

To clarify it was me that mentioned taxol..Yes the hospital I attend only gives 18 weekly taxol maximum because neopathy. In one respect I am pleased I found taxol quite a hard treatment as you know I only managed 10. Pleased it worked though.

Will you get much time off work during the Xmas period?

Linda
Member

Re: Anyone on Taxol

Linda - Thanks and yes continuing on weekly taxol for so long as works. Good luck with your appointment.

Helen - Thanks and on it indefinately. When you say 18 do you mean 18 weeks?

Sorry your results were not great. It is the biggest dread when they tell you. Will you still stay on Taxol?

Six years that is fab. I am four and a half from atart but only in liver sonce October last year. Just need to keep positive and not give in to it. People say they don't know how I keep strong and get on with it but that is all the choice we have. I have my bad days but no one sees those. But then you bounce back.

Keep plugging away. X

Ramade - Hi. You are so right that this thread helps. Best wishes to you.

Well not lomg to Christmas. All the best to you all.

Lorraine x
Member

Re: Anyone on Taxol

Evening Helen

I am doing OK on tamoxifen thank you. Sorry your scan results were not all good. Have to say you seem to tolerate taxol well apart neopathy which can't be nice. The hospital I attend only do maximum of 18 because people tend to come down neopathy. Have you had secondary in liver for 6 years then.?

Linda
Member

Re: Anyone on Taxol

Hi Linda & Lorraine
Good news on your scan Lorraine, really pleased for you. How long are you continuing on Taxol?
How are you doing on tamoxifen Linda? Hope it's doing the trick.
I had 18 Taxol, scan 2 weeks ago showed stability in liver apart from the largest tumour which had increased another mm, no new disease. So I had no.19 last week & we continue! Onc appt 19th Dec which is my 6 year cancerversary (secondary straight in at stage 4). Onc is keeping eye on my neuropathy which a couple of weeks ago was excruciating but thankfully has lessened now.
You take care both of you & anyone else on this journey.
Love Helen xx
Member

Re: Anyone on Taxol

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.

Ramade xxxx

Member

Re: Anyone on Taxol

Evening Lorraine

I am so pleased re your scan results were good. It makes it all worthwhile. Is it still the plan that you stay on taxol indefinitely until it stops working? It is good you are going to have a week off treatment over Xmas.

I am not back to see oncologist till early January where they probably arrange for me to have my 3 monthly CT scan.

Linda
Member

Re: Anyone on Taxol

Hi Linda and Helen

Just to let you know the results of my CT showed the mets in my liver have shrunk and there is no further progression. 😀😀

Was such a relief especially as I had just spent two days in hospital due to a spike in temperature and pain in my lower back so was paranoid would be bad results. Am recovered now.

Continuing on treatment with a week off at Christmas 😀

Best wishes to you both.

Lorraine xx
Member

Re: Anyone on Taxol

Hi Nicky

It is lovely to hear from you. I must admit it does seem really weird not to be going back and forth to chemo unit. Been going there since 2014. First with Everolimus and extermrstane then cape since October then last treatment taxol. Feel at moment out on a limb by myself. I am sure it will get easier. I have often asked in the past for biopsy when I was first diagnosed with liver mets but was told I could not. Even though I have responded well to treatment I know it is only a matter of time before things change. I am really pleased u are doing OK.

Linda
Highlighted
Community Champion

Re: Anyone on Taxol

Hi Linda 

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!

Nicky x

Member

Re: Anyone on Taxol

Linda

Good luck with Tamoxifen.

Lorraine xx
Member

Re: Anyone on Taxol

Morning Lorraine

Started to take tamoxifen on Tuesday. I have not just takent hormonal tablets since 2014. I was on Everolimus and extermrstane for 3 years 8 months then cape for 10 month then just had taxol.

Have a good weekend.

Linda
Member

Re: Anyone on Taxol

Linda

Sorry to hear that.

Did you say your moving on to Tamoxifen?

Scan moved to next Wednesday now.

Enjoy your weekend.

L xx
Member

Re: Anyone on Taxol

Evening Lorraine

Good luck with scan on Sunday. I had flu jab yesterday. Felt abit weird this morning not going to chemo unit. The last 2 got cancelled I was struggling to.be honest. Started to get neopathy in the last couple of weeks. Seemingly can be permanent if left.

Linda
Member

Re: Anyone on Taxol

Hi Linda and Helen

I am doing ok thanks - so far so good now they give me extra injection before. I had a rest last Thursday so could have flu jab. This week will be number 10 so first one of my fourth cycle. Having CT scan this Sunday but will not get results any time soon as next appointment with consultant is not until 30 November!! A long wait 😣

I still work three days a week but I do get tired. Am determined for things to bd as normal as possible.

Best wishes to you both.

Lorraine xx
Member

Re: Anyone on Taxol

Hi Helen

I see you already mentioned about your next scan. Foggy chemo brain.

Linda
Member

Re: Anyone on Taxol

Hi Helen

Thank you for your comment regarding scan results. How you getting on with taxol? Will they scan you once you have had the last one? I dpnt about you the first 6 were OK but now I seem to get alot more aches and pains. At the start of the treatment I was told alot of people work whilst on taxol for some reason can't see that as being possible.

The hospital I attend only gives patients a maximum of 18.

Lorraine hope it all went well last Thursday.

Linda
Member

Re: Anyone on Taxol

Hi Linda
Fab news on your scan results, so pleased for you. I am on number 18 this week, scan next week.
How are you Lorraine? Hope you're doing well.
Take care both of you.
Helen x
Member

Re: Anyone on Taxol

Hi Linda

Good luck with Tamoxifen.

Lorraine xx
Member

Re: Anyone on Taxol

Hi Lorraine

Pleased it went well today. As far as I am aware I am going to be taking tamoxifen. I have not taken that one before. I am back to see oncologist in a couple of weeks will ask again then.

Linda
Member

Re: Anyone on Taxol

Linda

That is avsolutely fantastic news. What a relief! I am so pleased for you. It makes it all worthwhile.

What is next for you?

My options are only chemo.

All went ok today, although have been full of cold for the past few days.

Please keep in touch with how u r doing.

Best wishes.

Lorraine x
Member

Re: Anyone on Taxol

Hi Lorraine & Helen

Just want to share some good news. Hospital rang with CT scan results. Liver tumour disappeared and bone is showing improvement. When they rang I was hoping for them to say don't need to go rommow wishful thinking. Today went same as norm. I will be skipping in there for my last now.

Hope all goes well on Thursday Lorraine.

Linda
Member

Re: Anyone on Taxol

Morning Lorraine

That's definitely a positive regarding tumour markers.

Regarding flu jab there is a shortage for me as I am over 65. It has been changed this year. I will ask when I go tomorrow when would it be the best day to have it.

Touch wood my toe nails and finger nails are fine. I do however have cal gel on my finger nails anyway. I get them done every 3 weeks..

It will be nice for you to have a week off the treatment.

Linda

Member

Re: Anyone on Taxol

Hi Linda

I get my bloods taken at GP including tumour markers. Am happy to say mine have also halved. 😀 Oncologist said this was a positive sign but CT needed. Not counting my chickens just yet. Having CT in next month and then back for results in six weeks. Having a break next week so can have flu jab.

Must admit am having a bit of a hard time with painful finger nails and toenails.

Best wishes.

Lorraine
Member

Re: Anyone on Taxol

Evening Lorraine

Pleased your treatment went well on Thursday.

Thought I might of had them last Monday when I saw oncologist but unfortunately not. Back to see her in 2 or 3 weeks. I have not taken the tramadol she prescribed dont want to feel spaces out. She did say depending on CT scan results treat ment might get stopped at 10 as opposed to me having 12. Don't know whether your hospital you attend does tumour markers. Mine does and they have halved since starting this treatment which I suppose is good but I would still like to see scan results.

The weeks seem to be flying by no. 9 already chemo. Hope it goes well with oncologist and you get a CT scan sorted.

Linda
Member

Re: Anyone on Taxol

Hi Linda

My treatment went ok yesterday. Am off to see oncologist later when will discuss getting a scan.

Just thinking of you and wondering if you recieved your scan results?

Regards,
Lorraine xx
Member

Re: Anyone on Taxol

Hi Linda

I have it in bones and liver. Sorry you are suffering so much with bone pain. I was once given Tramadol when I had pain in ribs near liver. I took one and was spaced out not good. Didnt take another. Different for everyone though.
Hope you get results soon. I hope to get a scan before end of month. Results here take at the very least two weeks if not longer. Dont know about you but are times I wonder if it is worth all of the pain. All we can hope for is positive results. Xx