I haven't been away yet this weekend, but not been on site as have hurt my back and couldn't sit would you believe I was bending down to open the lock on the door and the pain was unbelievable I am slowly getting better on strong painkillers from hospital. I hope its going to be better for weekend.
Jacquie you poor sausage you sound as if you got a horrible bug and clearing out junk do we women ever take it easy.
Glad to hear your doing well Kay what does NED mean sorry to be doppy.
Cathy has the steam stopped coming out of your ears due to incompetent people at your work. glad to hear Taxol is bearable.
Manon sounds like your boss it lovely would be great to speak to you this time as I was at the other end of the table last time.
I hope you are doing ok Kathryn and are coping with the Taxol you are still managing to work which is amazing.
Well just heard I am starting my Taxol on the 27th which is a Thursday so not sure if I will now manage the 11 will have to wait and find out about the treatment do you get a week off.
B***r the 11th is the Xmas dinner of a group of people I met on the Macmillan living with cancer course. We all got on so well and it was such a cathartic experience that we still meet up about once a month - though alas we are one down from the original number. I can't miss it - especially as we recently lost one of the group and I have a feeling one of the others won't be with us long. I value it because we are a very mixed group - all sorts of people coping with very different illnesses - men even! On the other hand I'd love to join you in London. So difficult, but I think I'll have tio miss this time. Still, if I go to 4 days a week next year I'll have much more time for this sort of jolly.
Think NED means no evidence of disease (rather than no existing disease) - otherwise I've been using it wrongly! My last scan didn't show any evidence of disease although they do know (as do I) that it is there - hence staying on xeloda.
Sorry to hear about your back, Beli - you really need that just at the moment!! Fingers crossed that it doesn't spoil your weekend at all. Such a shame too if you can't make the meet on the 11th - I had 3 weeks on and then 1 week off but some others seem to be doing it without any break.
Also sorry that it clashes with your lunch, Manon - would have been good to see you again. Definitely will have to arrange something for early in the New Year.
Thanks for booking the table, Cathy, and I'd certainly prefer fishcakes to the Christmas menu (tho am very partial to Christmas pudding!).
Yes, no evidence of disease is what i thought too. Starting to go a bit crazy as 10-year-old daughter now has diarrhoea so was stuck in the house with her all day. I can't wait to go out! Instead we blow dried each others hair (well, what there is of mine) and made fairy xmas decorations from a kit. Haven't done any more clearing out as I wore myself out the other day. In my case it's not so much the husband as the children that won't let me throw anything out. Good to hear from everyone. Poor you Beli - hope your back improves very soon. Kay I enjoyed the mental picture of you jumping up and down and screaming! I have to say my colleagues have been wonderful and are always very aware of my situation. But I'm in a v small women-only medical environment where one of the other staff also has BC so things tend to get spoken about freely. It must be so hard when colleagues don't know or don't unerstand. Manon I like the sound of you cutting back a bit, esp. as you say there are things you want to be doing outside of work. Looking forward to seeing whoever can make it on the 11th, love Jacquie xx
Jacksey - you must be going stir crazy. I hate those stomach bug things. Eventually, came back to hospice from chemo at 6pm so have had had sandwiches for lunch and dinner. Think I made the right decision to come back here and go home tomorrow. I did get the taxol - perhaps i should have posted on the taxol thread rather than here but after 4 weeks off chemo, he can't feel my liver so really pleased and all my liver function tests are normal as is my protein and albumin and ALT so feel that a miracle has happened. Really hope get to see you on 11th. Kate
Hi Beli Poor you with your back as well .It will be a shame if you can't make 11th but you may well be having your Taxol as it is 3 weeks on and one off. Have you heard any more about what is planned for your treatment? Love Kathryn
Kate that's great news. Hope you've made it home by now and are enjoying being there. Had a lovely weekend. Husband back from a week-long conference and son home for weekend, so lots of hanging around chilling and chatting which is very rare. Teenage daughter went on a train alone for the first time, to visit a friend in Leeds. V traumatic time at the station, trying to get her onto the train and find her seat without getting me and 10-yr-old stuck on train when the doors shut! Had to sprint the length of the carriage shouting 'can you let us off please' as people dived into seats to get out of the way of this crazed woman, with terrified daughter running along behind and the doors beeping. We can laugh about it now... Hope all of you in the Taxol club are bearing up. Beli - hope you had a fab weekend away from it all, and your back's improved. love Jacquie
Jacquie How I laughed at the thought of you running in the train like a crazed women I hope you have recovered.
Kate brilliant news.
I had a lovely weekend thank you we went to Helsinki all four of us, we had a great time and it snowed which I wanted it looked so beautiful and my girls of 19 and 23 had such fun playing and dancing in the snow do they ever grow up. I'm still on the painkillers for my back and just kept popping the pills so I could get out and about. I think I can now make the 11th as have been the hospital today had big discussion with my Onc and spoken to her again this evening on the phone and shes thinks I should stay on Xeloda for a bit longer as my tumour markers haven't gone up that much an she thinks that maybe we have been to hasty to try the Taxol she is going to keep a close eye on things, I'm going to have another CT soon as the scan showed no progression.
Kay thanks for explaining NED if there is no sign of disease how come you are on Xeloda is it because the tumour markers went up even though they can't find any sign of the disease, its all so confusing.
Kathryn and Cathy hope you are both ok.
Thanks Lottielemon for looking that up for me.
Shame Manon you cant make the meet but next time hopefully we can catch up and you lunch group sounds goodf.
I got the results of my MRI scan. The lovely smile my kind oncologist gave me when she arranged my scan was well placed. They have confirmed liver secondries. 2 very small and next to each other - the 3rd they think is a cyst. My bloods show good function. And I think the tumors have shrunk from my CT scan a few weeks ago due to my EC chemo. Due to start Taxotere 9/12. I haven't seen my Onc yet, my next date with her is the 8th. So, I'm in the club! If any of you have any information or advise or can make suggestions of what I need to find out more about I would very much welcome your help.
A little bit about myself. I'm 36 wiith a 3year old and a 9 month old; both girls. Great husband, family and friends. Very upbeat and happy. My secondry diagnosis is dissapointing but I've been getting used to the risk since my primary dx and since the suggestion was made anyway so its not been too hard news to bear. my main upset was felt a few weeks ago from my CT scan. And the denial really helped! Determined to live my life and get on.
Hope you are all okay and don't mind my joining in again.
Hi Lea welcome to the club but it goes without saying, wish you weren't eligible to join us. The best advice I can give is to get a note book and keep a record of appointments and any questions you may have. I am on my second one and it has been worth its weight in gold. I have had secs for almost 5 years and started with lots of clusters in the liver, each time I have had chemo I have had good results that have bought me extra time with my family. Sorry you have had to join us but hope we can help you get through this difficult time.
Oh Lea - not really the sort of news you wanted but good the liver ones are small and your liver function is good. Thanks for the personal info about yourself, it helps when replying and of course, you are welcome here but it is such a shame that you've had to. I'm guessing here - have you been diagnosed with primary and secondary at the same time and having 3 or 4 EC followed by 3-4 taxotere 3 weekly? Probably could find out somewhere but a bit late in the day to be hunting through threads so sorry about repeating old questions for you. I had taxotere 3 weekly and I'm really sorry to say it was the worst chemo I've ever had and I've had 5 different sorts now. I'm currently on taxotere's relation of taxol weekly and tolerating that really well. There have been loads of threads about taxotere so to get a different and more accurate picture of life with taxotere I'd search for that as many people are fine on 3 weekly taxotere and others like me it is the worst thing that could ever happen chemo wise but it did work even at a reduced dose. For me, the taxotere gave me severe joint pain so that I couldn't walk, horrendous mouth ulcers and totally floored me. I always went neutropaenic and ended up in hospital each cycle. Saying that the people I know who had no problems were given neulasta or GCSF injections to boost their white blood cell counts so I would push for that as I think that would have made the difference to me. Some people can also have a varying degree of allergic reaction to it. I always had a bright red face, neck, chest and back for about 48 hrs which I took piriton for. This helped counteract the high steroid dose they give you to prevent the allergic reaction so that I could get some sleep. I always felt really well on days 1-3 (apart from not really sleeping for the first 36 hours) and then be ill for 4 - 10 days and would just about be well before staring the next one. With weekly taxol - apart from the first dose where they gave me a 10% overdose accidently and I spent our only week's holiday as a family in bed - I've been fine. The steroid dose is lower so I'm less manic and apart from the dreaded constipation from the ondantrason for antisickness, I'm not noticing any difference being on or off it. There's some of the gang here who are working whilst on weekly taxol and others who get very tired and have other problems. I remember as well that I got terrible diarrhoea with taxotere. It can effect your nails. Some people swear by black nail varnish but I didn't and my nails are flaky and odd coloured but not fallen off which can happen. Peripheral neuropathy can also be a problem with taxotere and taxol. It starts as a sort of tingling in the ends of fingers and toes and can lead to loss of sensation so if starts to happen speak to the onc as they will need to reduce the dose or the damage can be permanent. Hairloss is the other. Mine had just grown back to a length where i took my hat off and it all fell out again which was upsetting. Sorry to paint such a bleak post and hope others can be more psoitive with their experiences. I would definately make sure you have plenty of backup to help out with your children on rough days and let others do housework etc. We get some meals cooked for us which is really helpful. It must be so hard with young children - mine were just 5 and 8 at primary diagnosis and are 8 and 11 now and that is hard enough. there are plenty of people who post here that have been fine for many years with small liver tumours so I'd try and seek them out. There seem to be some surgical options and other specifc treatments if your secondaries are confined to just your liver. Something called RFA springs to mind. Sorry, my secondaries are so widespread that these options are not available to me so don't know anything about them - just names. Sorry - probably have totally upset you now and made you worried about the taxotere but when you find the many threads about taxotere, it may reassure you or depress you but at least you'll get a more accurate picture and can base your questions on that. Chemo is so individual. Hope I haven't scared you too much - this was my experience and lots of others were fine on it. So please carry on posting and you're very welcome here. i was a late starter here on this thread as although I had a 3cm liver tumour stuck somewhere of no importance from sept 06 onwards, in July this year a very small tumour grew through my common bile duct and made me very ill very quickly and very yellow. That problem has been solved by a stent to relieve the blockage and my liver function is all normal now so that's good news to end on. All the best Kate
I am sorry to read of your recent secondary diagnosis, 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 and have received 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:
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:
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.
Really sorry you have had to join us here, but you will get some great support. I am 40 with a 2 year old son and 5 year old daughter and was dx with bc and liver mets in July 07. Am doing OK though, finished chemo in November 07 and been on Herceptin alone for the last year nearly now. No real side effects with herceptin either, and life carries on as much as normal really. Get very tired, although put that down to running around after the kids, and my daughters social life!!!
I had 3 x FEC and 3 x taxotere. I did sail through FEC, but the tax knocked me for six. The best advice though I think, is at the first sign of cough/cold take your temp and keep eye on it. Dont think it will just go away. I ended up with chest infection and hospitalised for 8 days and missed my little boys 1st birthday. Second time it nearly happened I was much more aware and got to docs for antibiotics so saved myself a hospital trip!!! Just keep an eye on your health and dont sit in waiting rooms, tell them you are on chemo.
Good luck with your treatment, and am sure you will get so many positive stories from the ladies on here, who are 4-5 years down the line like Debs.
Sorry to hear your scan did show liver secondaries, Lea. Good that they seem to be shrinking with the chemo though. You've had lots of good advice from Kate, Dawn, etc - all I would add is to give yourself time to adjust (though you sound to be doing a good job of dealing with things!) I too have always found the not knowing much worse than the knowing even when it has been bad news. I was diagnosed with liver mets in May 2007 and have certainly found it gets easier as I have adjusted to what is a "new normal" which includes hospital visits and scans and drugs etc etc. Still get bad days but also have some very good ones!
The RFA Kate refers to is radio frequency ablation which might be an option for you as well as the chemo - there are some ladies on this forum who have had this done. There is also the possibility of surgery - my team thought that might be possible for me but won't go into all the details of why it didn't prove to be when they tried in January (though the surgeon is now looking at that option again). Send me a pm if you would like more details.
HOpe everyone else is ok. I'm just back from the hospital after collecting my 10th cycle of xeloda. Onc is arranging a MRI scan so that they can see in more detail exactly what disease is now there. Had a CT in Sept. Though NED on that, Beli, it is a case of the tumours being too small to be picked up - onc is certain that if I stopped the xeloda, things would start regrowing almost immediately (which is what happened after the taxol and avastin last year). Had a long talk with the onc today about the suggestion of surgery again - he feels it is a very remote possibility but we will see what the MRI shows.
Good to hear you had a great time in Helsinki, Beli, despite the back. And think it is also good to hear that onc feels you can stay on the xeloda rather than switch to Taxol - fingers crossed your next scan shows no progression.
Really looking forward to seeing everyone on the 11th - we are meeting in London for lunch, Lea. Not sure where you live but if you are able to join us you would be very welcome. I have found talking to other people with secondaries so helpful - the best support really. Glad you think you can now make it Beli.
Hi Everyone, Sorry to hear your news Lea, but welcome to the club. When was your primary diagnosis? You sound like a spring chicken.... (I'm 45). I was diagnosed with primary and secondary bc in liver 18 months ago. Had WLE and long torturous chemo (FEC then taxol with herceptin) up until this time last year, which shrank the tumour. Now on herceptin and tamoxifen and things seem fairly stable. I had a MUGA scan yesterday (necessary to check herceptin isn't damaging heart muscle) and seeing onc on Monday. He was supposed to be referring me for RFA after the last appointment, but postponed it until the results of my back scan (as I was getting a lot of back pain - now resolved). So will talk about it seriously on Monday. From what I've read, RFA and liver resection (surgery) have been used on a lot of colorectal cancer patients with liver secondaries, so most of the research is about them and not about bc (not a big enough sample group yet for bc). What they've found is both have proven benefits, but there's a slightly higher risk of recurrence with RFA than resection. However, resection is a much bigger and more risky procedure. I want to talk this all through before he sends off the letter - will keep you posted. Beli - Helsinki! Wow what a treat - and you got snow too. So glad you had a good time all together, and your back was manageable. Better go and put some dinner on - sausages and yorkshire puds, cabbage, gravy and mash. Mmmmmmm. Have a good weekend everyone lots of love Jacquie xx
Had results of my scan today and oncologist is pleased with response of the taxol plus the avastin, liver tumors have shrunk and bones are looking bettter, so my dodgy liver has responded to taxol and markers are now in 40s. Obviously I am pleased as alternative is much much worse, so we continue with taxol plus avastin for a further 9. Timings are quite good as my break week coincides with Christmas which I now feel I have permission to enjoy!
yummmy yumm, jacquie - I love food like that and my expanding wasteline proves it...
Lea -I am sorry that you have joined our "club", but you will find this site a great source of information and support.
I have found Taxotere MUCH easier than Epirubicin. I have the GCSF injection - which I do myself. I had a neutropenic session the first time and not since. Taxotere in shrinking my liver tumours - I am on 4 of 6.
I am going to talk to my onc about 'local treatment' after last Taxotere. would like to hear form anyone who has had RFA and Laser etc.
So pleased to hear your news, Cathy - hopefully you can relax now (as much as we ever can!) and really have a great Christmas, confident that things are going well.
Hope your appointment on Monday goes well, Jackie - these decisions are so difficult to make when trying to balance the possible benefits with the potential risks.
I have my scans organised now for next week - MRIs on Monday and Tuesday and CT on Thursday. Lots of rearranging things at work today which has quite stressed me out!