Hi Lesley - i have mets to lymph, bones and liver ( all multiples) I had taxol 12th today- first 6 doses had to be reduced cos of liver functioning tests showed problems and they explained to me that taxol can interfere with liver function - so its balencing the chemo to help liver but not overload a problem liver , if that makes sense - anyway , liver tests showed some improvement after 6 so dose of taxol went up - and liver function tests now improving - scan shows no change in liver mets but the liver is functioning better so i take some hope from that - give it a bit more time - i'm n weekly taxol - are you? - good luck with it all, jayne
Hi, Just arrived back from a seeing the onc and for the first time since starting weekly Taxol he asked to examine me. I have blood tests on Fridays and if they are ok I go through with the Taxol on a Monday. I've had 5 now having missed one between Xmas and New Year. Last week he told me that my bloods were ok but the Liver blood test had shown no improvement but was stable. He never volunteered any info today so I asked what the results of last weeks tests were and was told that the red and white blood tests were fine but the Liver blood test had risen, albeit slightly and they would not make any decisions on just one week. What decisions does he mean? its only when I got home I started to really worry. Does this mean the Taxol is not working ? has anyone else had Taxol and not shown any improvement until they had a few more (I'm having 12 ). On saying this after todays Red/white blood results came through I'm having the Taxol on Monday. Any comments would be appreciated.
happy new year lets hope it is a good one health wise for all of us.
Yes I get the bloody nose each morning I feel really bunged up at first I thought it was the avastin but when I stopped taxol the bleeding stopped and now I am back on it same problem. I have had one quite long nose bleed.
Hope this helps.
Hi, I've had 4 Taxol now, I missed a week last week due to Xmas but have this constant feeling that my nose is blocked and when I blow my nose I lose a clot and a little blood but it stops quickly and then is ok for a while (it happens 3/4 times a day). Has anyone else had this whilst on Taxol. Lesley
I also feel fine for a couple of days after taxol - i think its the steroids - I have it on friday and ok until sunday evening / monday morning when i feel very tired - totally zonked out! - i'm on 10th taxol tomorrow and my hair isverythin but still there ....although i have cut it very short .........lets hoping its doing its stuff for you , jayne
Hi,Anybody on weekly Taxol. I have had my 3rd this last Monday. Each week Monday, Tuesday and Wednesday I have been well but Thursday extemely tired and last week I tried to work through it what with Xmas shopping etc. but have found today I am unable to get off the sofa and feel it is getting worse with each week. Also the area around my Liver has felt very tight and uncomfortable on a Thursday and gets better next day. Has anyone else had anything similar. I keep hoping its the Taxol taking effect on the Liver. Also I am feeling very down as my hair is coming out in handfulls, don't know whether to take the plunge and cut it and shave my head as its its in everything I eat. 10 years ago when I had treatment it came out all in one day so never had this.
I also get very severe constipation on my weekly taxol but I'm also on other drugs that cause constipation like MST and amitytylline so I have a long standing problem and have developed strategies that work for me.
I know I'm very odd but I like the taste of movicol!!! I have the plain flavour but you can put squash/juice in it to help change the taste. I often need 3 a day. I also take dioctyl tablets and have up to 5 a day of them when things are bad. Then if things get very bad, I take picosulphate which is not the same strength as picolax for whole bowel clearance as I find sennacot doesn't work for me. I also have to resort to suppositories at times.
Drinking plenty really helps as well as the foods you mention. There are lots of medications out there to help like magnesium trisilicate which gives me bad stomach cramps but others tolerate it well.
It is so miserable and a subject people joke about but is really not funny at all.
Hope you find something that works for you.
on the back on taxol thread I had to tell everyone my problem I had not gone for 2 weeks, so checkout the advice that they gave me. I have to take movicol and it makes me gag but it works sort ofish! I also make the go cake but do mine with dry figs. I am due my 6th tax on Monday and still have hair it is very very thin. It had only just started to grow back I think by next week it will all be gone.
Sorry to hear of your constipation problems. If you have a look at the thread ' Top tips to help get you through Chemotherapy' there's quite a lot of suggestions on there from users who have had the same problem and found some relief. Don't suffer in silence though please do speak to your medical team if this continues I'm sure they'll be able to help you.
Hello, Severe constipation. It started last week a couple of days after the first Taxol and I thought don't worry I'll go in the morning but after 5 days and feeling really uncomfortable I realised I needed to take something and took Dulcolate which worked to some degree late Sat evening but then spent an uncomfortable night with stomach cramps. However, a couple more trips to the loo and I felt much better by Sunday afternoon. When I went for 2nd Taxol last Monday I mentioned the problem and was told if I had started with it now I would have it throughout the course of treatment. I was given Movicol but cannot get it down. This week I have eaten large quantities of homemade Bran Loaf, prunes, orange juice, vegetables and plenty to drink but its all going in and nothing coming out ( sorry to be so blunt ) and am now feeling pretty grotty again. Has anyone any advice.
Hi, I had first Taxol this morning and no problems with the drip etc. Just got to wait and see if I get any of the side effects they listed. The nurse was absolutely brilliant as most of my veins are rubbish but she found a good one and went in with no trouble (early days yet). I find I have mixed emotions when in clinic , depressed with all the other people having chemo and on the other hand such cheery people make you feel you are not alone.
sorry for your news. there is a thread for us weekly taxol timers so come and join us there or the thread abot living with liver secondaries which is a long running thread. I've only recently joined in both so don't be put off as it looks like we all know each other really well but we've not all met each other but are supportive and a lot of us do live chat on tuesday night.
I was told not to worry about the possibility of low wbc as weekly tax is given in small doses it does not tend to have that dramatic dip that you get in 3 weekly doses. I've found the side effects so much easier than when i had 3 weekly taxotere and I swore I owould never touch tax again but 2 years later and here I am. Get a bit tired and was upset about hair falling outt but now think it maybr trying to grow again. I've had 12 out of 18 doses and then see what happens. Nails have discoloured but not fallen off so pleased. Just the usual bowel probs I get with chemo.
Hope all goes well - typing this after sleeping tabs so probably doesn't make sense.
hope all goes well
Hi Kay, Thanks for your comments, the one about the sneezy, coughy children made me laugh. I forget how difficult it must be for women with younger children who wll be bringing all the usual bugs from school. On my original diagnosis nearly ten years ago my youngest was then eleven so I suppose I was open to it all then but you forget and at the moment I find myself dwelling on the worst scenarios.
Love Loopyjack x
It is all quite confusing isn't it? Sounds though as if although the blood tests show things are progressing, there hasn't been a lot of progression which is why the scans show no change. Your onc would appear to be trying to be very proactive and stop any progression early on before it can affect you at all, which is good.
I was on weekly taxol (18 doses) last year and my blood counts did drop - though onc gav me neulasta injections that helped keep the white blood count at a reasonable level most of the time. I continued working with 3 and 4 year old children throughout as my onc has always had the view that if your counts are low and you are going to get an infection, then you will anyway! He just urged me to ring in immediately if I started to feel unwell so that they could get me on antibiotics quickly before the infection became too bad. He also felt that doing the things I enjoy doing (which does include my work most of the time!) was really important psychologically but I do know other oncs have different views. Luckily my view is the same as his.
So I would say do all the things you enjoy and want to do, avoid really close contact with anyone who obviously has an infection, and just monitor yourself and get antibiotics quickly if you need to. HOpefully you won't. My white blood count dropped after the first one (but I've always had problems with low white blood counts on the 3 chemos I've had, even the current one xeloda which is meant to be much easier on the bloods!). The red blood count fell more steadily.
Take care - and enjoy all those CHristmas does, particularly the school concerts - I'll be one of those sitting amongst the sneezy, coughy children (I do love them really!) trying to make sure they are ok!
Love Kay x
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.
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.
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
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.
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.
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
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
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
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?
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 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
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.
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.
Posted on behalf of Debs
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.
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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.