Hello, So glad to have found this site. I have recently been diagnosed with secondaries in the liver and have had 4 months treatment with Femara which has slowed it down but my oncologist recommends that I begin a course of Taxol as it seems to be slowly progressing. I am very frightened to be going through this again ( I had a lumpectomy,chemo and radiotheraphy in 1998) . Can anybody help with regard to the side effects of Taxol. Another drug he has mentioned is Xeloda has anybody any comments on this drug. I have to make a decision for next Tuesday.
Dear Loopyjack
Welcome to the BCC forums, you may find it useful to know about some of the other support services from Breast Cancer Care for secondary breast cancer along with the support you will receive here:
There is a secondary live chat on Tuesday evenings, this is Breast Cancer Care’s online chat facility where you can talk to others in real time, it’s from 8.30 pm - 9.30 pm on Tuesdays. It is facilitated by an expert moderator and a nurse who are on hand to point you to sources of help and information, for most people, the chance to talk to others in a similar situation is what counts, again, for more information follow the link below:
breastcancercare.org.uk/content.php?page_id=6218
The following link will take you to Breast Cancer Care’s publications about secondary breast cancer which you may find useful to read, there is also a DVD called ‘Living with secondary breast cancer’ which has been recently introduced, you can order these via this link or by contacting our helpline on 0808 800 6000:
breastcancercare.org.uk/content.php?page_id=5258
I hope this information is helpful to you, please don’t hesitate to contact us either via the website or the helpline for more support and information.
Kind regards
Lucy
Hi. well I dont know what went wrong but my reply has come up on its own.
Love Debsxxx
Posted on behalf of Debs
Hi loopyjack,
check out the thread Back on Taxol I was on it in Feb till May and had to go back on it 2 weeks ago. Hope it doesn’t scare you to death! I have also done xeloda I was on it for 2 years and found it a much easier to manage chemo, but please remember we are all different and react in lots of different ways. The advantage of xeloda was you don’t lose your hair can plan for the weeks off to do little treats like holidays. Don’t get me wrong it can still give you nasty side effects such as sore hands and feet but for me a gentle foot rub with e45 worked. There are a couple of threads on xeloda as well.
If I can be of any more use just let me know.
Love Debsxxx
Loopy Jack
I have liver secondaries too, along with lung and bone. I have just had my last but one Taxol. I Have being having it along with gemcitibine so i guess its hard to tell you which chemo has given me the most side effects.
Side effects i have had is nausea, trembling feeling in my tummy , headaches, swollen legs and feet, fluid retention, low bloods and low platelets.
I have also had Xeloda in the past, found it the easiest chemo so far.
I am due to go on a hormonal after this chemo ends. I am due a scan to see if its worked but doctor says judging my my liver function tests, they can see an improvement in my liver.
Good luck and let us know which treatment you go for.
Best wishes
Jakki
xx
Hi Loopyjack
I (like Debs and Jakki) have done both. 18 sessions of Taxol weekly last year (with Avastin) and am now on xeloda. Weekly Taxol initially wasn’t too bad at all for me but lost my hair and got very tired towards the end - also had problems with my nails lifting and some falling off. Xeloda is definitely easier - less tiredness etc but I have had very sore hands and feet with it (blisters, cracking etc). AM now on a lower dose and feet and hands are improving. One advantage of xeloda is that you can stay on it indefinitely because it is easier to tolerate - so I am now on my 9th cycle, and there are others who have been on it for several years. It also comes in tablet form so you go to the hospital every 3 weeks (for blood tests and to collect the drugs) and then take it twice daily for the next 2 weeks, then have a week off. I find that easier to manage somehow.
Good luck!
Kay x
Hi loopy!!
I too have secondaries just to liver and had 12 weekly taxol earlier this year, and found it quite manageable, I used the scalp cooling and kept my hair and never suffered with my nails lifting but did have joint aches and pains. I also tried Xeloda this year but unfortunately it didnt work for me and I wasnt on it long enough to suffer any side effects.
Good luck, take care
Sue xx
Sorry to hear your cancer has returned. I too have mets- to liver, pleura and bones. I started last week on xeloda, so can’t reallly advise you I’m afraid, as I’ve not really had a chance to judge it! But just wanted to wish you well. Like you, I had a long time between the primary diagnosis(1996), and the recurrences. I was just beginning to believe that I was going to be one of the lucky ones, so it all came as a huge shock. Hope all goes well for you, and you are soon started on treatment. Take care.
I also had a long time between fist dx and now secondaries in Liver, Pleura, bones and one on e my Aorta.
Had 3 Epirubicin and now on Docetaxel (taxotere). It is working and I now have the pleasure of 3 more to make 6.
Hair growing back and nails well oiled seem to be ok.
Thinking of some local treatment to Liver when finished chemo. Any one else thinking of this?
gill
Well just arrived home from appointment with my oncologist and had a different outcome to what I expected. He has not received the blood marker results back and says whilst the Femara has slowed the Liver tumours down and I have a good quality of life he does not want to rush into chemo ( I don’t either) so I have to wait another week for the blood results to come through, have another blood test on Monday and see him Tuesday. I am a little confused as he sent me home last week with leaflets to read on Taxol and Xeloda with a view to making a decision today. Glad that my OH went with me last week or I might have thought I had misunderstood him. Another problem I have is that the right breast were the original tumour was 10 years ago has now gone quite firm and in April this year I had a mammogram and 2 ultrasounds which showed a little thickening around the scar tissue so I had 3 lots of 6 cone biopsies out of which one showed an Atypical cell but they will not do anything about it now that its in the liver as well. When I asked him today he says there could be something going on in the breast but it would be treated along with whatver drug I am taking. Anybody else had anything similar. Hope this makes sense I am feeling a little confused today. x
Being in this undecided limbo land is such a horrible place to be, Loopyjack. Sounds as if your onc may have had a rethink - had he got the liver function tests back today (they take less time than the markers)? Is it the fact that liver function is ok, that is reassuring him that you can postpone starting chemo?
Can’t help with any advice about the breast I’m afraid. I had a mastectomy after my primary dx 6 years ago and there is no evidence of any disease in the breasts now, just (!!) in the liver.
Take care. K xx
Hello Loopyjack
I have just typed a long reply and my internet connection went.
I just wanted to say that I am in a similar situation I have mets in liver lungs and lymph nodes. I have had 6 FEC and I am now on Armidex and Zoladex and my mets have been stable for a while. Ihave now got a lump in my breast which I didn’t have originally but have not been give any different treatment. Apparently the drugs I have now can keep the mets stable for some time.
I too was given those leaflets to read but this would be the next step should my mets grow.
I had a scan on Saturday and see the onc on the 27th for results so fingers crossed.
I some ways you feel as if you should be having chemo so that you can see that something is being done but on the other hand its nice to have a resonable quality of life without it
regards CAroline
I have seen my oncologist today and the Blood marker results were back and he says they show signs of progression so I am to start weekly Taxol on the 1st December. Having been given all the possible side effects I feel quite scared but also know there is no option if it is to be slowed down. What I don’t understand is yesterday I had the usual blood tests for Liver Function, Full Blood Count etc which I have been having every few weeks from when I started taking Femara and they were just the same as always some a bit better, some a bit worse but no definite change and this is what they have been throughout the last six months and what my treatment has been based on but the Blood marker results from blood taken last week which were tested at a different hospital show signs of progression. What could be the difference in the type of tests? Feeling a bit emotional and teary at the moment and hope it passes soon as don’t want to upset everyone around me.
Loopyjack
Hi Loopyjack,
my onc does not do tumour markers so when I read the posts of others who do have this test I always feel a bit left out! So maybe it is the tumour markers test that has been done, try not to worry(easier said than done) we have a thread back on tax so if you have any worries just post on that and we will be along to help as fast as we can. I find taxol hard but others are still working I find this incredible so it shows we are all different in our reaction and side effects. The plus side is it is a pretty good drug and I had over 60% shrinkage so fingers crossed you have even better results.
This whole cancer thing is an emotional roller coaster this disease is the pits hope you don’t feel too sad for too long.
Take care.
Love Debsxxx
Forgot to ask anyone on weekly Taxol how long before hair came out? xx
My hair came out after 3 weeks of weekly taxol.
Jane
Thanks Jane.
How confusing for you with all this kerfaddle about tumour markers. I’m glad my onc doesn’t believe in them.
My hair thinned very slowly over weekly taxol and then it fell out about taxol 6-8 but not completely gone even now. Had 10 weekly taxol and then was ill for 3 thursdays so had 11th taxol last thursday and am beginning to think my hair maybe regrowing but that’s probably the 3 weeks off.
My nails are a bit flaky but not falling off so pleased. Just have had trouble with nerve irritation and ongoing peripheral neuropathy from when I had the taxotere in 2006/07.
I find the dexamethasone a mixed blessing as seem to be taking them half the week and then not for the rest. It gives me energy but then I stop and end up feeling grotty.
You’ll have to join us on the taxol thread.
Hope all goes well and keep in contact
Kate
I had weekly taxol and used the cold cap. I managed to hang onto my hair, I knew it felt thinner but noone else would notice. I had 18 weeks of taxol and herceptin.
Gemini
Saw my Onc on Friday and got the results of the CT Scan I had on Tues. The lymph in my chest is still the same as is was in Sept as is the mets in liver and lungs but it was the serum blood test done 2 weeks ago that showed some slight progression, its all very confusing. Well tomorrow I start the weekly Taxol and was wondering how any of you ladies cope with the low blood count which makes you prone to infection. From reading these letters some of you ladies work whilst on this, are you looking around you all the time for people with colds etc. Whilst I had chemo 10 years ago it was late March to Oct so the summer months were a blessing for that sort of thing. How about supermarket shopping etc. Did you find it was some doses before the bloods began to drop as I have the usual nice things I want to go to at this time of year, Grandchildrens school concerts etc. Thanks for the previous replies it really has helped.
Loopyjack x