I live in Ireland, but am a Surrey Brit. I was directed to this site by an American Site, so happy to meet you all. I wad diagnosed with stage 4 Breast Cancer in April 2012, metatasis in my spine, sternum also lung, liver and behind the eyes, but no brain involment. Also mediastinal lymph nodes. Everything sounds so final when written down. I am just starting my second round of weekly Taxol plus monthly Zometa. 6 Weeks on plus 2 weeks off. My cancer markers have dropped to 44, which is fantastic!!I find the Taxol easy to tolerate, but wonder why the wait before starting on chemo, but was put on Aromasin tabs. Because of the spinal involvment I have had to use morphine patches, Sevredol and morphine under the tongue for severe pain. I am having to change hospitals as the journey is over 2 hours and at the moment my driving days are over. Too much morphine for Dublin traffic. Does anyone have a Palliative Care Consultant? What if the Taxol stops working? I will read through your comments to see what you say, I think the morphine takes more out of me than the Taxol. Using husband and family to drive me around, just drives me around the bend. I am 64 and have been driving since I was 18. It makes me feel old and useless. If possible I shall ask my new consultant if I can reduce the morphine! I have been fitted with a port, which is fantastic. I am not frightened as I nursed my mother through exactly the same disease and secondaries. Luckily she died before hearing about my diagnosis.
sorry to hear your news - It is so shocking isn't it. you seem to have been incredibly unlucky with your start to treatment - I know everyone reacts differently but just to say I am still on taxol after 6 months - so far I have had 23 doses on the weekly regime 3 on 1 off plus I am also on avastin and zoletronic acid as well. I know I have been lucky but I have coped really well on it and although there are of course side effects they have been very manageable & I have still been able to get on mostly & enjoy life though with compromise of course.
it is certainly nothing like first time around on docetaxol where I as floored. I have lost one big toe nail & the other is on it's way but that was after 5 months. I still have some of my hair & haven't bothered with scarves or wigs it just looks very thin & whispy. my feet are slightly numb & a bit tingly but not painful and my hands are just starting to get a little tingly too & a bit weaker but does not affect me terribly. they have kept me on it longer than the planned 18 doses because it is working so well & shrinking everything back. I had lung nodules, bones & lymph glands and on my CT scan in feb my lungs were completely clear!!!!!
I hope this helps you as although we are all different & no one can predict how any individual will react it is possible to cope with this treatment well and so I hope you do too.
hope that is the last of your hospital stays & best of luck
I have been diagnosed with secondaries to the bone, liver and lung they are saying small nodules but so so scared, I am on a weekly taxol regime only had one so far and then got hit with fluid retention and urine infection so had a lovely 5 day stay in hospital resulting in me missing my second taxol. I am due to have my 2nd tomorrow and feeling quite nervous. how bad are the side effects ofthis treatment aa would like to think I could spend quality time with the family at weekends.
Hi louise have you got any plans for an op. i feel the same as you ! mine is under the breast but i thinki can still feel it abit, trouble is lots of scar tissue there too. i seem to be chasing them up all the time , gor to wait ages for a scan then i think dr is away do when i will get an appointment to see her i dont know !!!
Hope you are getting on on new chemo
Hi Sarah , I think removal is an option but because we are a reoccurence we are treated differently. I understand if chemo works and there is no evidence of decease anywhere else they will remove or if the tumour in your breast gets out of control eg mind is quite close to my rib, I personally just want mine Out.
Hi girls , awaiting scan not till 12th april , fed up to say the least the communication at the hospital is porr!!. anyone had mastectomy once diagnosed with secondaries , it was mentioned before but now i get the feeling it is not onthe cards, i have recurrance in right breast same areaas first time. The oncologist just suggested i discuss with breast surgeon. ? wait and see i supose like usual. Fingers are feeling numb and nails a little sore especially first thing inthe morning.
Hi Pinkylou, saw oncologist this afternoon she is stopping the avastin, carrying on with taxol 3 then a week off then another 3 weekly sessions, hopefully will have had a ct scan by then to see what is happening. I did ask about operation which was mentioned earlier, but i got the feeling that it was not an option now i have secondaries, ?? just got told to discuss with surgeon, i can feel a slight lump in breast the recurrance, ? how lung is doing until scan results. She did discuss having it 3 weekly maybe in the future,
How is the epi suiting you , are we destined to be on chemo for ever??
Hi Sarah , I had a blocked nose and flu like symptoms with avastin , my nose was quite bloody as well. How many have you had now ? Are they doing it 3 weekly instead of weekly ? I have had 9 sessions of the epi seeing oncologist tonight. When do you get the results of your chest x ray.
hi girls, not had a good week last week , chemo was delayed as i felt unwell and had a temp , spent 9 hours at the hospital in a gp referral unit having blood tests , chest xray etc waiting around for ever. Arrived 2.30pm got home at 11.30pm nightmare. I feel better now no infection showed up so ? what was going on. But now i have developed a perforated septum in my nose ! i can't believe it, i have suffered wuth rhinitis, blocked sore nose since starting on Taxol & avastin apparently it is a rare side effect of avastin. Seen my gp who is referring me to the ENT department and he is going to fax the oncologist, i did ring them this morning on the chemo helpline but they were supposed to discuss with dr and get back to me - still waiting!! Do it yourself Health service i think !!!!
Excuse the rant not a happy bunny at tne momment, obvioulsy if it is the avastin i dont' want any more of it!!.
millykins - One of the problems I have is that I have a senstive bladder and I get interstital cystitis (not cause by bacteria as is normal cystitis). I have a bout of it now. I am not sure if the chemo brought it on or painkillers I had been taking but I am loath to try anything at present, until I nurse it better. I am on weekly Taxol. Were you?
Hope Taxol is working for you, Sarah.
Hi saw a dr today not the consultant as i was expecting , he is organinsing a full body CT scan to check if taxol / avastin is working, fingers crossed. He also gave me a prescription for Difflam for my sore tongue so hopefully that will ease things. Having more side effects on a smaller scale , all manageable but bl**dy annoying felt the need for that !! 7th taxol this week .
Take care all
Hi Ann_04. glad you have omeprazole - i find it a real help. re your aches I have been lucky on taxol & not really suffered but when I had docetaxol it's sort of "sister" first time it was bad & my oncologist recommended taking Ibuprofen on the day of transfusion & for 2 days afterwards which he said his patients had anecdotally told hime really helped & it did for me. apparently if you take it on the day it can help prevent the acheing. worth a try?????? esp as he is a stickler for only reccomending things he feels are tried & tested.
hope that helps XX
Thanks for your replies about the acid, ladies. I now have some Omeprazole, which seems to help. I did have some when on Epirubicin but had run out.
I have had two doses of weekly Taxol and already I am having terrible muscle pain. I had this on Epirubicin (which didn't work, anyway). It nearly crippled me and am so disappointed that it has started so quickly. I didn't have it on Xeloda.
My question is, have any of you had this problem and have you taken Glutamine for it? It is supposed to help and is even mentioned in the BMJ:-
However, I have read contradictory articles about whether one should take it with chemo. My thoughts are that, if this gets worse, I would have to stop Taxol, so I might as well risk it. I didn't take it on Epi and that still didn't work!
This article concludes that it does not have a negative effect on treatment:-
Hello to all my friends on here. Hope you are getting on ok.
PS Put this post on late last night (bit tired). On looking at it today, I am wondering if the Glutamine is supposed to be given before chemo, in which case, it is too late. I was just clinging to some hope that there might be something to make this more bearable and stop me being crippled!
Hi pinkylou & Sarah 66 - yes I will be going on to avastin fortnightly plus zometa for bones every 4 weeks but at least that is only 45 mins of treatment rather than the current 2 and a half to 3 hours it takes but I will still have to see the nurse in the AM - leave for 2-3 hours while the pharmacy makes it up then have the treatment in the afternoon & still have to travel 50 milesa round trip for it thou- boo. but as long as it works!!
I get a sore mouth but use difflam anathstetic mouthwash which numbs it nicely - they prescribe it at the hosp & it worked better than bongela - I also get terrible rhinitis & use a nasal wash with saline which is a wierd sensation but clears the snottiness well. I sometimes use nasal spray if I am going out as my nose just drips permanantly otherwise - like an old lady with a dew drop- mmmmmm nice!!!!!
Hi all millykins that is good news, glad you have managed to book a holiday , i am seeing oncologist tomorrow to ask some questions re future plans etc and scans. I am suffering with my sore tongue and mouth at the momment and rhinitis , anyone got any tips? i have been using seawater nasal irrigation spray , vaseline up my nose , lovely i know and some ulcer gel on my tongue, it is so sore! getting fed up with it all now, .
Pinklou, how is the work situation going and the epi
Take care all
Hi milykins , that's such good news , are you going to be on avastin as a maintenance ? I am very pleased for you , I had 12 taxol and avastin but it didn't work foR me and I lost most of my hair. I am really pleased you are going to move. Avastin works for alot of people for many years and also taxol, so I am very pleased.
Hi there - just wanted to check in and share my good new here & hope to give anyone starting on their taxol the hope they might feel they need. I stared treatment for secondaries to lungs, lymphs & bones in Aug 2012 - planned for 18 taxol weekly plus avastin & zolitronic acid. completed 18 taxol on 8th Feb & was told I would carry on as I am coping so well. reasonable side effects totally maneagable. I had my CT scan on 15th feb & went along on the 22nd not expecting any results as it usually takes at least a couple of weeks. anyway long story short my Onc said he would just check to see if they were in so we only had a few minutes of anxiety waiting time & he came back in beaming, shook our hands & said congratulations you have had a really good response - we don't see such good results this often but all is looking very good - he did advise cautionarily that it isn't gone away but is very very pleased. I will now have 3 more taxol then carry on with avastin & ZA for now. I am so so happy it is the best news we could have hoped for & I am now starting the process of getting our house on the market which got all put on hold 2 1/2 years ago when I got first diagnosed and then again when I got secondaries. - I WILL move into a nice new house which will be more suitable whatever the final outcome is for me - none of us knows how long we have but we must make the most of the time we have. rather than spending my time berating the fact that I have to live with this awful disease I intend to carry on making the most of things and enjoying what I can when I can - I have booked a holiday to centerparcs with my gorgeous little girl who is 6 and have another summer holiday booked with friends in August. am planning some theatre trips & have a belated birthday meal in March - lots to enjoy & wonderful family & freinds to share it all with.
XXXXXXXXXXXXXXXXX Jo XXXXXXXXXXXXXXXXXXXXXXXXXX
Just been having a check here since I knew a few of the ex-Xeloda ladies are on this one just now.
Val - good to hear Taxol is working for you. Hoping you can make it to April, must seem a long way off to you just now.
Ann - I took Lansopraxole on Cap and it worked better for me than Omeprazole. Fingers crossed Taxol will work for you too.
Louise - I'm feeling well on Vinorelbine, but have recently developed lymphoedema which is a bit annoying when I haven't had any surgery, so am putting it down to a bit ofprogression on Cap blocking lymph nodes. Have 1st phyio appt for it next Monday so not too long to wait at least. Hope epi works better for you, is there a BCC thread on this one?
Sarah - I developed secondaries to skin when undergoing treatment for primary BC and initially was given the impression that surgery was now off the table. Since then I've asked onc about it and although she didn't sound overly enthusiastic it does still seem to be an option if I can get the secondaries under control. Seems to be more of an if you want it you might have to push for it in some cases.
hi all just had Taxol & avastin x 6 this week , got a rest week next thurs. not feeling too bad, main proble sore nose rhinitis , and sore tongue , taste has gone no joy in food, even chocolate!! . Energy levels pretty low too which is frustrating, could not mange to take son to the pics this week luckily his big sister stepped in bless her.
ann i too had omeperazole for heartburn really helps. Seeing oncologist on march 4th , i had to push for an appointment as nothing was arranged, want to ask about scans etc as dont want lots of faffing and time wasting, ? how many treatments she wants me to have? i suppose i have to wait and see if it is working? fingers crossed, if it is working will she keep me on it?
they did discuss mastectomy but ? whether this is still on the cards ?? anyone else with secondaries had surgery or do they leave you?
Hi again Ann,
I have now had round 11 of weekly taxol and saw my Consultant today to see if we continuew or not as total number is 18.
Good news is that both my tumour markers are reducing. That is CEA and Ca125 which indicates that this Taxol is working for me. I am pleased with the outcome. I have been having pain in my left arm and had radiotherapy on it ( one) ten days ago and although the pain is not totally gone it is much improved and I take less pain meds now for it.
This will take my chemo up to the middle of april, seven in all if I can mange to complete the course.
My main difficulty is fatique and having to rest and sleep so much. But I am just going with the flow and trying to accept the fact that this is how it will be for me for the next few weeks. Do you take Omeprazole for your reflux? If not phone your GP or the ward for some pills. If you are already on it you may be advised to increase the dose meantime. Good luck with the treatment and keep in touch. Love Val
i find Omeprazole great for acid reflux and indigestion, on prescription from your GP. Take first thing in a morning before anything else and it will last all day.
good luck with your treatment.
hi Ann hope you are doing ok. I had weekly taxol , I did 12 . Lost most of my hair and the bond pain was immense at times I could hardly walk and to be honest it had taken me a year to get my walking back to normal. I am now on weekly epi and had good scan results with this , I am using the cool cap really hard going but haven't lost much hair. I had some steroids but I had to come off them as they just give me bad thoughts. I can't take the come down. I feel quite sicky but by Friday after having treatment tues I feel better. I am going back to work in a month on rehab building my hours up , I have been off for nearly a year, how are you Ann ? And Sarah and pam and angelfalls and lemon grove and Gail ? And all my other friends ? Xxxx
Had my first weekly Taxol last Monday. SO tired for a couple of days. Had acid reflux and no meds for it. They gave me some for anti-sickness but they didn't work on the acid. Had to sleep propped up. Has anyone else had acid problems? It has gradually worn off over this week, though. Next chemo on Tuesday.
Louise - Was the Taxol weekly and are you having weekly Epi? How are you coping?
Hi , I have had 5 epi just having 6th today had 2 scans and it is working. i think nodes in my arm pit what ever they are called. I have a reoccurence in my breast. I had 12 of taxol . I have used the cool cap with the epi and hair loss hasn't been too bad. Taxol I didn't use it and I lost alot. I had 12 Taxols then they said it wasn't working.
I have lung mets very small .5 of mm about 6.
Hope this treatment will be the one.
I have it in my bones, axillary and supraclavicular nodes and liver. How about you?
I hope my reaction to Taxol isn't as bad as Epirubicin, as far as movement is concerned. I was told the reaction I had was unusual. I don't think the onc understood. I was offered radiotherapy but I knew it wasn't the bc in the bones that was the problem and declined. When I changed to Xeloda, I recovered.
How many cycles of Epi have you had? I had it weekly and tolerated it fairly well, except for the pain - oh, and hair loss! They decided it wasn't working after 11 weeks.
Val - How are you coping? Are you having Taxol weekly?
Hi Ann , it sounds like I am doing the same as you in reverse. I had taxol first I found bone aches hard . I did xeloda , worked for while. I am now doing weekly epirubicin but finding it easier than taxol. I think everything effects everybody differently, where do you have your secondaries ? Take care Louise x
Have any of you ladies had weekly Taxol? I start next week and am wondering what side effects I am likely to get. Had Epirubicin first, which nearly crippled me, my muscles hurt so much. It didn't work. The Xeloda, which had a slight effect for the first scan but not after the second scan. Now Taxol.
hi Sara been off for nearly a year. I feel very tired , I was on full sick pay. I am starting back Monday and friday 4 hours for about month theN buiLd up to my full hours.just would love to get back to normal. Hope taxol works for you louise
Hi Pinkylou . i have asked to see onc and will press for scan or xray as soon as she considers appropriate , if things are not working would rather find out sooner rather than wait till the end of this course, it will be going on longer than i thought as they are now adding ion rest weeks would rather have got on with it, never mind.
how long have you been off work, i have been off since oct getting full pay at momment but will be 1/2 pay from April , have to tightent he old purse string !! not much fun is it?
Hi Sara. As I understand there will be a chemo for you that works a silver bullet as such. But no one knows which one , it is protocol to start off with taxol. Avastin works for some and not others. I realise it is key to be kept an eye on my doc gives me a chest x ray everyb3 weeks as we are still trying to find that silver bullet. I had 12 sessions of t and a and it work but it stopped and he was quick to change. But having said that no one knows what else out did for me it could of stopped things going anywhere else. I understand that any of these chemos can put you no evidence of desease or into remission for long periods of time or sometimes the chemo doesn't work and you have to move on to something else, after a year of treatment I am just going back to work on the 18th march should of finished my weekly epirubicin which I hoping is the one. It is the E in FEC that I had 4 years ago and it worked then. Let me know how you are ? Has anyone heard from pam I have messages but nothing, hope she is ok . Xxxxx
Hi Girls had my 4th treatment yesterday after my rest week. Taxol & avastin, i was in the unit for 7 hours !! what a day had to wait for the prescription for avastin to be faxed through and then made up by pharmacy what a nightmare. Will take my mini lap tap that has been lent to me next time, finished my book and did loads of croossword , take a break magazines,. They do offer tea & biscuits and sandwiches at lunch so not too bad. Seats are not he most comfy.
i am being treated for secondaries to lung , not biopsied as too close to heart, decided not to at present. Just wondered if it is likely that you have to continue on chemo indefinately , i know i have to wait for scan results ,non arranged yeat , waiting for appoint with onc tio ask her. Will also post this on secondaries thread, thought i had yeasterday but it is not there. probably pressed the wrong button on the keyboard!! lol
Take care all Sarah66
I am going this afternoon for number 8 of Taxol. I seem to be doing okay al in all. The worst bit is feeling tired and needing to rest more often. My bloods are a bit of a worry as I have needed several blood transfusions since I had a hip replacement in August. I ony had a transfusion a few weeks ago bit the nurse told me today on the phone that my Hb is down again although she did nto say I needed another transfusion just yet. Will ask this afternoon. I went to the Pian Management team beacuse I have a very painful left ar, They did a long questionaire which resulted in me scoring 18 and if I scored more than 3 it showed that it was nerve pain I was having. They asked me to participate in a trial for ketamine but I decided to put this on the back burner because I am waiting to hear of I can have radiotherapy first as I have been advised that this could help improve the pain symptoms. I know all this is not related to taxol but that is where I am at the moment. Hugs to all ladies on Taxol. from Val
Hi Millykins01 thanks for replyong, glad to hear from you ,
i was told by the chemo suite manager that i might carry on with chemo too ?? would have been nice to hear that from consultant??
i was thinking oh ok chemo op then back to work and normality so it kind of threw me, i know i have secondaries well they were not biopsied but they are treating them as such but i did not really think about having to have chemo long term, kind of changes things. Will i be ok to go back to work , unfortunately too young to retire, tempting though lol.
I have had 3 taxol and 1 avastin so far hair is thinning , have a wig ready so wait and see,when did you have your scan ?
Hi there - not been on for a while - Sarah 66 just to say I am on my 16th dose of taxol plus avastin & Zometa & I still have hair enoough not to need to wear a wig - thinning but reasonable cover & no cold cap as I only managed 10 minutes before crying!!!! It started to fall around week 5 but slowed considerably & now my eye lashes & eye brows are growing back as well. I have used caffiene shampoo & some SP hair restore but that is all.
I also wanted to ask whether anyone else had been told their regime for chemo then once they got to the proposed end they had carried on. I had my onc meeting at week 16 of the proposed 18 taxol & the onc just calmly said - Oh you are coping so well on it I see no reason to stop as long as the scan shows more shrinkage or at least no progression. it was a bit of a shock as I had prepared myself mentally for coming off chemo but in some ways I am glad as if it is working then surely I have a chance of it killing off even more of the evil stuff. just wondered if anyone else had a similar experience. I know I have been lucky & suffered relatively few/minor serious side effects apart from tiredness & generally 1 day in bed a week to recover - Oh & the loss of 1 big toenail but hey who needs them anyway!!!!
Hope evryone else is going Ok - I do often read the messages but don't post often but still take much reassurance from knowing others are out there going through similar stuff. XXXXX
Hi alll how is everyone doing ? hope all is ok with everyone, i have a rest week this week so i have been told , that is ok but in some respects i just want to get them done have a scan and see if it is working, will just have to be patient i suppose .
Best ishes to all
Hi everyone. I started Taxol in December - 3 weeks on, one week off. I have liver and bone mets - big spread in bones since last year and recent (found out just before Christmas) spread in liver. Had the first cycle ok, had to adminster Filgrastrmin injections; was due to start second cycle on 4th Jan but it was cancelled due to low platelets. Had it last week and have clinical tomorrow to see whether I can continue, onc said I may have to have it every other week. Anyway, sorry this all a bit rushed and boring, I have come out in horrid spots on my head and face. The face ones are healing slowly but my scalp is very lumpy and tender with spots that don't have heads. It's quite itchy, too. My hair is clippered and is slowly falling out. I have mentioned this three times to hospital but they say they don't know what it is and recommended over-the-counter spot cream. Has any one else suffered from this? I note that Sarah66 has some antibiotic cream - would you mind telling me what it is? I know it seems trivial but with everything else that is going on I simply refuse to be a spotty mess!
Good luck tomorrow Sarah , that taxol really does take a hit on the bones , I found that hard. I did number two red devil yest , the cool cap was just as bad ,,, I swear they bring it up from the dungeon. One I didn't do with taxol was have my eyelashes done and I am doing that now , makes me feel human , and I look normal. Take care louise ,,, how is your hair? Xx
Hi all awaiting Taxol x 2 tomorrow if bloods ok , got to have antibiotics for some yukky spots that have developed so hopefully that will not stop treatment?? Some days have been ok some days not so good, got heartburn and bone aches plus the cold weather not helping. Have been really lazy snuggling with my boy ( 11 now but stilll likes a snuggle except he is taking up all the room !!)watching dvd's .
Hi pinkylou , i still feel gutted that i could not finish the cold cap , i think it is having it weekly and for so long each time that will be too much , i could feel myself getting agitiated and wound up , and thought is this really worth it, think i may have managed 3 weekly treatment better with cap but not to be so wiggy here i come!! Best wishes for your treatment
Hi Sarah , I was going to say to you it is really hard going. I had it 5 years ago and I started again this week , I nearly ripped it off too. I want to go back to work so I stuck with it, it is really hard though. I think you will find with the tawill your hair will thin but won't lose all of it. I am not sure I will keep up the cool cap for the whole 18 weeks of epirubicin , red devil . See how I go.
let me know his you are
hi all ,had my first taxol and avastin today , not too bad just took a long time on the unit. Tried the cold cap - tolerated it for 45 mins but was a struggle not to rip it off!! nurse told me i needed to wear it for another 2 hours decided to give up, was very upset but due to treatment being weekly for 12 weeks i decided not to put myself through it , too much every week, stilll a shame though.
Feel a bit woozy and need to sit quietly in bed reading at momment.
hi all ,had my first taxol and avastin today , not too bad just took a long time on the unit. Tried the cold cap - tolerated it for 45 mins but was a struggle not to rip it off!! nurse told me i needed to wear it for another 2 hours decided to give up, was very upset but due to treatment being weeklyfor 12 weeks i decided not to put myself through it , too much every week, stilll a sheme though.
Feel a bit woozy and need to sit quietly in bed reading at momment.
I did the cold cap when I had FEC-T the first time around and remember how horrible the brain freeze was! I can't remember exactly how much longer chemo took with the cold cap (well, it was nearly 10 years ago!), but I know it meant extra time before and after. I hope it'll work well for you both.
I'm on the Aristacats trial (Exemestane & Saracatinib/placebo), as well as Zometa. I'm having my first 12-week scan on Thursday and should get my results next Tuesday, so I'll know then whether I'm staying on the trial or moving on again... Fingers crossed this one is working, though - I'd quite like to be a Stable Mabel for a while...!
Hi spent the day waiting for district nurse to come and do pre chemo bloods - did not come ! hopefully come tomorrow or i will have to chase them. Hickman line a little tender still but ready for first taxol and avastin ( hopefully) on thursday, hoping to have the cold cap how is it, does it take much longer in the unit than without??