Breast Cancer Now Forum

Rather late I’m afraid. after many years I came to avoid these forums because I have lost so many, and dear Nicky understood that. She was always so knowledgable, supportive, and just so kind. RIP dear Nicky. So many tears, but she is safe.   mo ... View more

Mermaid, I just want to agree with you how good it is to see Nicky on here, giving her wonderful and informed advice as usual. Thank you for all your help over the years, Nicky. I just hope you are doing ok with this covid shutdown on our treatments.  and of course it’s good to see you too, mermaid! You must be getting on reasonably with your treatments. You sound well. And feeling well too I hope. That’s so important.   I too worry about the frequency of scans. Mine, over my 6 secondary years, have usually been 3 monthly. I had one or two 6 monthly in the 31/2 years on letrozole when I was rock solid stable. My next should be in June but of course that’s up in the air because of coronavirus. It has been described as merely ‘routine’ but my routine scans have shown up my liver progression, my pulmonary embolism and my kidney involvement requiring a stent. Routine scans can show up problems early, but right now so many treatments and diagnostic procedures are being put aside so the nhs can cope with this virus. My hospital is now eerily empty, with nurses having time for to prepare tik toc dance videos! I don’t blame them but it is no good having underused hospitals. They can be made safe in this viral time, taking some ideas from the supermarkets.......controlled entry with no unnecessary companions, mandatory hand gel use, no cafes for lingering, wiping down arm rests regularly, even attended lifts so no button pressing with managed use of lifts. Back to the future! I remember as a child that lifts always had attendants in department stores! Strange solutions for strange times. Enough. Please take care everyone! It is still good for me to visit here occasionally to realise I am not alone.   mo   xxxx ... View more

Just throwing out a message to ask how you are, if you drop by here. I don’t come to the threads much any more. Won’t say why here. I suppose I should try sending you a PM and may try later. I’ve got out of the BCC habit! But I might give that a go this evening. We all have plenty of time on our hands now, so no excuses! But hoping you are ok. I’m still here!   mo.      xxxx ... View more

Ani.........you don’t say where your skin mets are, or how extensive, but have you asked about radiotherapy, or electrochemotherapy? This is also known as ect. I have had skin mets on my chest near my mastectomy scar and had radiotherapy which dealt with them so far. The first, which led to my secondary dx, was removed 5 years ago and biopsied and didn’t return. Systemic treatments can make a difference of course, but although letrozole worked for me for 3 years keeping me stable with bone mets, nonetheless another small skin met appeared. The radio dealt with that. The thing is to discuss all possible options with your onc. Ect is not widely known about or used and not done everywhere. I can’t remember the main hospitals offering g it, but I know the royal free do it. There is a website..........https://www.igeamedical.co.uk/information-patients/electrochemotherapy-where........which shows the hospitals doing it. Sorry but that link didn’t come up live!   in the end ect May not be appropriate for you but I thought I’d mention it. We are on a learning curve, and just need to share. I would not like to think you hadn’t known about it, or radiotherapy. All the very best,   mo ... View more

Donna.........just noticed your post. I was looking around for posts about capecitabine which I am currently on. Your symptoms sound similar to mine after being on docetaxel about a year ago. About 4 weeks after stopping it my big toe became sore and infected and very purple. This can happen while still on docetaxel, or other chemos. Mine happened weeks later. For me it was initially dismissed, but after another month.........and eventually antibiotics.........flucloxacillin, the first antibiotic of my life!.........I noticed a thin white line appear at the base of the nail. I was actually losing the whole nail which led to the infection. The new nail grew under the old which I left alone. It was carried along on top of the new nail. The whole thing took almost a year......!.........but painless, and now over. I imagine you are going to lose the nail/s which are affected. Just wait and see. But the body copes very well.    All the best. I may be wrong but thought I’d share my similar experience. It wasn’t a problem in the end, once I realised what was happening. Bloomin’ chemo.   mo ... View more

Rest in peace, Bon. Stretch your new wings wide.  A wise friend on these threads. Thank you ff for letting us know.   mo ... View more

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!   mo ... View more

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!   mo     ... View more

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, mo ... View more

Katzygirl,   i just noticed your enquiry about making contacts with other secondaries. Do you know that Breast Cancer Care organise secondary meet-up groups around the country? I go to the one in oxford when I can. It is nice to be among others who you know understand. And there can be sharing, advice and general support. Sometimes the meet-ups include visitor speaker sessions on various topics. Anyway, here is the BCC link where you could see if there is a group meeting near you. But if the web page isn’t clear just ring the BCC helpline.   link: https://www.breastcancercare.org.uk/information-support/support-you/secondary-metastatic-breast-cancer/living-secondary-breast-cancer-meet-groups   If there is a group near you then click on it and you should find their calendar. They meet once a month. hope this helps.   mo ... View more

    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.   Link: https://www.breastcancercare.org.uk/information-support/support-you/secondary-metastatic-breast-cancer/living-secondary-breast-cancer-meet-groups   Hope that helps and you find a meetup within reasonable distance. Bye for now,   mo   ... View more

Deb (mermaid),    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,   mo ... View more

Nicky,   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.   mo ... View more

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,   mo ... View more

Aggy..........just bumping up here to say I have sent you a PM. Hope your mum is doing well,   mo ... View more

Thank you windflower. What you have said , particularly about going on to warfarin, will add to the questions I will ask my onc who I am seeing tomorrow. I hadn’t thought about blood clots before.......I am in my 5 th year metastatic.........nor has anybody ever mentioned clots as a risk. If he says anything interesting I will post it here.   all the best,   mo ... View more

So sad to hear about littlelizzie. Thinking of her today, and her big sister who I assumed posted here to let us all know. She earned her wings and is safe now. Will offer a little prayer after posting although she doesn’t need it! She’s flying high.   mo ... View more

Just to say that I too have a blood clot in my lung........pulmonary embolism. I was rung by our secondary Macmillan nurse last Tuesday telling me to go to a&e immediately, and not to drive! I had my scan last week.......after my fourth cycle of capecitabine........and the onc apparently told her that it was seen on the scan. No mention about whether the cape is working or not which I would like to know! I see the onc next week for that. Anyway after a long evening in a&e I was told bloods ok, ecg fine, and put on daily fragmin. I have no symptoms so was lucky it was noticed on the scan. I don’t know how long I’ll be on fragmin but the Mac nurse said probably six months. The a&e doctor said just having cancer increases the risk of clots, but I am now wondering, after reading this thread, if it is actually associated with the cape. It certainly needs to be watched, and of course scans don’t look at our legs, so leg pain should always be reported I now realise.   thanks for posting about your experiences..........it’s nice to know I’m not alone. Was quite depressed about it. One thing after another. I have had quite bad hand foot syndrome leaving me with infected toes, so on antibiotics. Ho hum. Anyway do take care. We have to be patient and long suffering!   mo ... View more

I have no helpful advice here as I don’t know your details, but I do sympathise with the shock after several years of boring stability! I had begun to feel I was invincible too. I just thought I’d suggest that if you are moving on to tablets it sounds like capecitabine which I am now on after herceptin failed for me. There is a dedicated cape ( also called xeloda) thread here if you are going in that direction where you will be ‘welcomed’ and find very helpful advice and support. This is a strange journey. A learning curve. I think there is a thread about insurance and breast cancer too. Of course if you are on tablets you should be more free to travel than on IV.   all the best and do use the threads to your advantage. Browse! And let us know how you get on.   mo ... View more

Bon.........all my best wishes for you and thinking of you each day. Perhaps there will yet be a treatment you could consider, but in the end you must decide. We are all in the same boat remember, and going on the same journey. You are not alone. We hold hands. We all hope to give support by doing that. You have given so much support to others over the years. Do come back here to let us know how you are, if you feel like it. But always thinking of you, as you move forward.    With love, mo ... View more