Leah.......I have just reread your post and it is very interesting. Thank you. I am a bit slow mentally these days so always read things several times just in case! Anyway, I am pleased your first dose of epi went well and hopefully still fine. Your port sounds a very good idea........because of you and Ellen I shall be pushing for one for myself when/ if I start myself. Why risk the extravasation? You have given me the confidence to push for it. I have noticed that you have a powerport in contrast to Ellen, with a picc line. You seem delighted with your port, but Ellen has problems with her picc. I can’t understand why her onc don't consider changing her over to a port........so much more reliable.
Ellen?.........if you are reading this have you considered asking about changing to a port? I think it would be worth it for you. A port is under the skin I think.........Leah knows all the details. It is unlikely to become dislodged. No harm in asking.
thanks again both of you for sharing what you know. For me I like to know as much as I can. My experience is that if I make clear I know what is going on then I get a better response, and am allowed to be involved in decisions. I will certainly be pushing for some sort of line or port.
all the best to you both, and do try to keep in touch here. I check the threads regularly and will be keen to see how you are both coping. What a journey!
Thank you, Ellen, for your reply. I agree that epirubicin sounds good for you...........if you are stable that’s good! And it sounds as though you are coping very well. I admire you for that.......I’m a bit of a wimp! Of course fatigue is very common with these chemos. People who have never suffered with it have plenty of advice. I understand because I had several rounds of docetaxel last year. On bad days I just gave in. Have you tried capecitabine? I am starting it again tomorrow. The worst thing is sore hands and feet. I developed a pulmonary embolism so have daily fragmin injections for 6 months. Probably another se. But otherwise I find it reasonable.........occasional tiredness, and diahorrea but manageable. Epirubicin next. So hearing that you are surviving gives me hope! And your weekly schedule seems to suit you. Anything to help with ses.
Thank you again for your follow up, Ellen. Oh, and we are similar in that I too have multiple bone mets, several small liver mets, and some lymph nodes. So far I am reasonably well..........it’s the treatments that make me ill! Take care, and do keep in touch. Enjoy your afternoon rests. You deserve them!
Hi Ellen & RRH!
I too have bone & liver mets
Had my first today and so far so good.
Ive also just had some bloods sent off for the new Guardant 360 test to search for other options going forward.
Im 2 weeks on 1 week off with 55mg dose each time I think(?)
I also had a powerport fitted recently and it’s been an absolute godsend - cannot express enough how much easier it’s making things & I wish I’d listened 2 years ago when first suggested.
All bloods and chemo given via port and Epirubicin only takes 5 mins, pushed through by hand, by a nurse, as there’s no risk of vein damage with port.
Lets keep in touch with side effect swaps. Good luck & God bless
I have my drug through a PICC line. Tend to get a mild reaction to the drug a couple of days after treatment (abdominal discomfort). Tired nearly all the time. I have multiple bony mets and liver mets at present. Hard to say whether symptoms are due to chemo or disease. Blood count stable. First CAT scan on treatment indicated stable disease whereas I had had progression on all previous treatments. However I am a little sceptical re scan results . Have to rest for 2 hours each afternoon. Have stopped driving since I commenced chemo and don't go out and about unless accompanied.
However we have been on holiday twice whilst on treatment (short breaks and I always take out insurance).
My main moan is about my PICC line which seems intent on dislodging itself. Am on my third line now. Just wonder if anyone else struggles with this. Every time my dressing is changed I am apprehensive it will dislodge further. Moved 1cm last week during dressing change.
So on balance Epirubicin has been better for me than the previous regimes.
Ellen, I am still interested that you are having epirubicin weekly. It does sound more bearable than what my onc prefers..........a 3 week dose all in one go. My experience is that the body does not like big blows, but can cope with something more spread out. How are you coping with epirubicin? Also I would be interested to know if you have it directly into a vein, or via a pic line? I have read that it can cause damage to the arm if any escapes from the vein during IV.
i haven’t started myself.........yet. My onc suddenly changed his mind after an MDT meeting and decided that I continue with cape for a few months before another scan. But epi is my next move......in my future!
anyway, Ellen, I hope you are coping.
Leah, I hope you are managing well too. And I see you have also started with weekly. It is supposed to be easier on side effects. Let us know how you are doing. Schedules can make a difference. This time on cape, after a break, I will be one week on, one off, instead of 2 weeks on, one off. It is supposed to be better for ses.
Do both take care,
I am having weekly treatment with no break. However there is a dose limiting amount that you can receive due to possible cardiac toxicity. I will only be able to have 10 more doses then must stop. If my CAT scan shows
progression I will discontinue it sooner.
Im about to start weekly epirubicin so can report back.
Hope you had some positive feedback from other members
Thanks for the prompt reply, debs. This is a quickie to give you the link to see if there is a secondary BCC group near you. The one I like meets at Oxford in a nice little hotel, so easy parking and nice surroundings. But it is a 40 minute drive for me so I don’t go as often as I used to. I live in south bucks. Sometimes there are visiting speaker sessions which can be interesting or just very helpful. If there is a speaker session the meet-up is usually from 11am to 3 pm, with lunch. That gives even more time for getting to know others in the same boat! As everyone is secondary nobody is surprised or shocked, and there is plenty of sharing and tips. There is usually someone appointed by BCC to oversee proceedings. Friendly and helpful.
Anyway here is the link. Scroll down a bit to ‘find a group’. Hopefully there is one somewhere near you. I told my new sec Macmillan nurse at my local hospital about them and she is now quite keen to get one going at our hospital! That would be convenient. Somewhere secondaries could meet just for coffee.
Hope that helps and you find a meetup within reasonable distance. Bye for now,
sorry you have had to leave Cape so soon as I had heard it works well on Liver mets. I would have queried staying on a bit longer as your small mets were stable... however the side effects didn’t sound good at all. I know very little about Epirubicin but I hope it works well for you.
I haven’t been to a BCC meeting but would certainly be interested in the future, is the info on this site?
Had my first bout of Big D on Saturday but manageable since. Fatigue quite bad. Will carry on and see how I go. It’s always trying to find the balance of efficiency/ side effects.
It is exhausting Mo mentally and physically and some days I feel very strong and others definitely not so. I know my fuse is short these days and I don’t suffer fools gladly 😂
keep in touch
so so good to hear from you and how things are going for you. As Nicky said it is good news that you are responding so well to faslodex, but of course you will be a bit worried about the new abemaciclib. Side effects can be so unpredictable and I get tired of the ‘everyone is different ‘. We are just supposed to be brave and see what happens. But you are wise to get stocked up on immodium etc. Be prepared! I have found loperamide so effective........why suffer? It works. I used it prophylactically on docetaxel.
I have recently finished 4 cycles of cape and then had a scan. The onc was not keen for me to continue, as the scan was not clear. The tiny spots remained the same......stable......but there was a ‘new’ spot in among the ablation scar tissue. Well, possibly new. Small. Also he wasn’t happy with my ses.........hand/ foot. I was happy with the ses, but have to admit it has got worse, even though I am off cape now. ..........crimson soles to feet, peeling fingers. So he said I would change to epirubicin............unexpected. To cut a long story short I asked for another appt for next Tuesday to clarify why I am leaving cape and what epirubicin will actually mean. It is rare to have it alone and not in combination as in FEC or similar. I don’t even know if it will be for a limited number of cycles, or for as long as it works.......indefinitely in other words. If it works. To be fair he is keen that it is a good chemo for breast cancer and the most important of the FECT combination. I should have asked for a few weeks to collect my questions but left the room after signing on the dotted line! Anyway, I have lots of questions now to ask on Tuesday. Again there will be new ses..........the usual, rather like docetaxel which I had to have to get onto herceptin, which didn’t work. Docetaxel typically.......Tiredness, big d, nausea, etc. Although ‘everyone is different’! Sometimes I get tired of it all. They say we are ‘living with breast cancer’ these days, but it sometimes wears me down........the uncertainty. Changes. Leaving cape is disappointing but the ses are quite hard, with infections adding to the mix. I have been on amoxicillin for a few weeks because of infected toes.
Ho hum. The daily life of having secondary. I am planning to go to the Oxford BCC sec meeting next week. It will be nice to be among others who understand and have experience of it all. There will be a speaker on exercise..........I am getting unfit since having the kidney stent. Can’t risk overdoing things so not as fit as I used to be. Slow walking. Steady! So that might help. Ideas. Also there will be two Churchill BC nurses to answer questions over lunch. Do you go to these BCC meetings? Oxford is a drive for me, but so good to be in a room of others who understand. My Mac sec nurse at my local hospital is going to arrange some sec meetings there. A good idea. I was invited to a group of primaries a few years ago and frightened them all to death! Never again!
anyway.....enough. It all gets so complicated. I can’t even start epi until I have had my stent replaced, so I will probably have nothing until about August. I have stopped cape. I agree that your onc’s plan sounds very sensible, deb, with ablation held back for now. Why interfere when faslodex is working nicely? When I feel low I remind myself what can happen to anyone........an old friend, same age, 72, fell recently.........fractured skull, broken rib, fractured orbit, mouth swollen, haematomas in cheeks. Life is full of surprises. I oddly look incredibly fit and well! Ironic. But of course I’m lucky. Pity about the cancer.
All the the best to you, deb. Do keep us up to date. I am always interested to hear news. Also good wishes to Nicky, our guardian angel, and of course Ellie, who got us going here on this new thread! I will report back when I know more about epi, Ellie, and what dose, schedule, etc. Weekly schedule will be one of my questions. Seeing onc Tuesday again.
4am. Better try for sleep. Take care all, and enjoy the summer weather, and long days,
Thats good to hear and must give you a sense of relief - the fact that Faslodex is working so well, not the fact you need all the loo roll etc 😉 Long may the good results continue and let’s hope the SEs stay minimal. It’s also good to know your oncologist is on his toes and checking for other more targeted options. I have had yet another change of oncologists which is frustrating. All of them seem to be retiring or moving back to their original hospitals so I’ve not had a very good run with consistency in care recently. Plus I have to correct them each time they have made notes about my SBC history as at times they get it wrong. It takes a while to get confidence in your new oncologist and from my appointment this week I’m not sure I’m there yet! It looks like you have found one though who does seem to have read and taken it all in, let’s hope you can stay with him for a while at least.
Hoping you don’t suffer with SEs too much, at least it will keep you out of the scorching sun that’s forecast for this Saturday 😂😂
Hope you are ok. Is it Cape you are on now? Is it ok?
I just posted to Nicky so you will see I’ve just started Abemaciclib ( Verzinio) alongside Faslodex. Waiting anxiously to see if the side effects are manageable.
Sorry to hear you are having to change treatment but hope Eribulin works well.
My recent scan was stable and by chance saw a different oncologist who I really liked. He was upbeat and proactive. I queried about having RFA to the liver. He said that as I was responding well to Faslodex and the liver met is small to leave alone at the moment. If one of my scans shows stable bone mets but the liver met goes rogue then we will stay on Faslodex but RFA the liver met. I reckon that sounds like a decent plan. He has also started me on Abemaciclib (Verzinio) which has just been approved for 2nd line of treatment. I’m on day 3 and armed to the hilt with Imodium and rehydration powder and soft loo roll as the main side effect is the BIG D 😟. Usually starts around day 6 apparantly so looks like a good weekend for me 😖.
You are right mo! I read the thread title incorrectly, probably as not so many ladies are on epirubicin for secondaries, or not in its individual setting (it’s most often used in EC or FEC). Sorry for the confusion everyone and forget what I said about how it is given. And, yes, I am on Eribulin so all the stuff I wrote about that is correct, as far as I know.
As to Eribulin I did have it as FEC in 2008 when I first was diagnosed with secondaries. Unfortunately for me I did get one of the most severe side effects which was long term heart problems. Although these are well known about in that range of chemos luckily they do seem to be few and far between, I was just very unlucky.
As to how it is given, weekly or 3 weekly, it may be worth doing a bit of online research before your next appointment? I usually say not to look online, but that’s for newbies where all the statistics are so out of date that it’s just plain scary. For us longer timers it is often useful to find some data about what is being suggested as a treatment plan. I did this when deciding on re visiting Eribulin as I was ‘offered’ (if that’s the word!) 3 different chemo regimes so I wanted to see which had the best outcome at my stage in my treatment, it will be my 5th or more line of treatment. So it could be worth seeing if any research has been done regarding if there’s any difference in weekly or 3 weekly Epirubicin, it may just be down to your own oncologists views. Also if you are uncertain you can always ask for a second opinion?
Take care mo, always glad to share my experiences, and good luck next week.
First of all I wish you all the best, Nicky. Treatment changes are always hard and unpredictable. We are just expected to be brave and carry on. I sometimes think it amazing that in 2019 we are still being treated with such awful poisons for cancer. Ho hum.
also I am a bit confused with the chemos mentioned. Are you going on to eribulin now, or epirubicin? Have you ever had epirubicin? I was wondering about the weekly dosage of epirubicin in ellie’s Case because I mentioned it as a possibility to my onc. Ellie is weekly. He said it can be weekly but he prefers 3 weekly. I didn’t ask why.....no time in a muddled appt.......but have arranged to see him again next week with all the questions I didn’t ask. It was a strange appt..........there were 6 of us crammed into a tiny room! I won’t go there again. There was me, my friend taking notes, and dr shah. Three. Then also a GP specialising in breast cancer, who in fact is my own GP! I’m happy with that. Then the new sec Mac nurse. That’s 5. Not sure what she adds as I don’t see her afterwards. Then someone I’ve never seen before......a trainee nurse. Would I mind if she sits in too? In future no. Six is too many with too many odd questions and wandering down side issues, with me sitting wondering about the epirubicin and why I am leaving cape. Even my efficient note taking friend missed some of the wandering conversations. Overlapping.
anyway, best wishes again, Nicky, and good luck with the new chemo. Or revisiting this chemo......eribulin or epirubicin. And as ever thank you so much for keeping your eye on us all! Our fairy godmother! I wlll report back after my next appt.......Tuesday.......about where I am going. In fact I think I have to agree with onc now as strangely the ses......hand and foot.......are now much worse and I’ve been off it for 2 and a half weeks! Flame red soles of feet, with skin hardening and beginning to peel. Hands too. Much worse than last week, but he perhaps could see where it was going as I said I was happy with ses.
do keep in touch, Nicky. You are always so interesting and well informed.
Hi ellenb and mo
There is also the existing thread about Eribulin a bit further down this page which you both might be aware of? I will be rejoining it as I have restarted Eribulin. I had it back in 2017 but only for 8 cycles, then I went back onto hormonals, had my liver op but now scans show the little blighters have decided to set up camp again in my liver! I had one dose of it but my bloods were too low for the second dose of that cycle so we skipped it altogether and I’m now due to have the first dose of the second cycle today.
Im not sure, having researched it quite a lot in 2017, whether it is given weekly so maybe ellenb could confirm it, mo. It is a split dose due to it being a very strong chemo, or so I have since learnt. It is given usually on day 1 then day 8 of a 21 day cycle, blood tests needed for both those doses. It really hit my wbc and neuts in 2017 so I had to have the gcsf injections but I don’t think everyone needs them. I also coped very well with side effects in 2017 but for the 1st dose this time around I did feel quite nauseous and also much more tired than expected. I’m ready to cope with that this next cycle so am more prepared. Your hair does fall out, or thins would be a better description, but also weirdly grows again whilst still having the chemo, this was noted by quite a few ladies who were on it at the time (2017)
Not sure if that helps
I have taken two courses of oral chemo including capecitabine. Had disease progression so commenced IV treatment. Progression on first treatment and also unable to tolerate the regime.Had bad reaction to next IV regime. So I believe the weekly Epirubicin was suggested to reduce side effects. Like you I have found little information on the internet.
I am coping with treatment, though have usual side effect of tiredness.My hair appears to be regrowing having lost it on previous treatment. Struggling with loss of appetite and am very picky about food but this maybe due the cancer rather than treatment. My blood count has remained stable. Please contact me if you have any more queries. Ellen
i was interested to see your post, although I have nothing useful to say yet. I am leaving capecitabine...a combination of side effects and possibly not working. This is my onc’s advice, and his next move is for me to go on epirubicin. I have found very little about it, particularly taken on its own. I have many questions to ask him next week, but assume I would be on it as long as it works......if it works! I won’t start until about August as I will have a general break, and also have a kidney stent replaced before starting epi.
But it specifically I am interested in your being on a weekly regime. I did in fact ask my onc about that but he wants three weekly. Do you know why you are weekly? Are side effects more tolerable on weekly? I am looking for as many questions as I can as I requested the extra appt next week after thinking things through. There were so many things I didn’t ask last week, despite signing the form.
Have you started on epirubicin yet? I hope you are coping with it and finding it effective. I sometimes think oncs and nurses should try a few chemos to find out how hard they can be! I can’t share experiences yet of course, but hope your new thread continues so I can share once I have started.
thank you for posting,