Breast Cancer Now Forum

Hello ladies Broomsticklady, I'm sorry to hear about your knee. What a bummer for you! However, glad to hear you're coping well with Cap. I'm on my 16th cycle. Had a couple of chemo breaks though. First one was after a number of cycles taking 5 tabs morning and evening. It was just too much for me and I was in bed most of the time with absolutely no energy. Onc reduced it to 4 tabs morning and evening and I've been much better, although I did have a 3 week break so that my feet could recover. They were very cracked and bleeding. Following various visits to podiatrist for dressings, the Flexitol I was using finally started to work, so I'm pleased to say things have settled down now and I'm doing okay, although still not much energy. Good luck to us all xx ... View more

broomsticklady, you're onc's right. My onc also told me that chemo wasn't effective on bone mets. Are you on a bisphosphinate(?) such as Ibandronic Acid (Bondronat) for them? I also have bone mets in the hips, spine, ribs, sternum, plus liver mets (touch wood, doesn't seem to be a problem for me), plus such a runny nose that during the Olympics Granddad said I should enter my nose as it's running so fast!!! Runny eyes that sting also. Fatigue is the main se though 😞 Good luck to us all xx ... View more

Hi ladies I'm on cycle 7 after a 2-week break. I was sleeping/dozing for most of the day. \Onc reduced dose from 2500 x 2 to 2000 x 2 and although I've only been on this dose for one week, I already feel better. Side effects aren't so bad either. Got no diarrhea so far, whilst on cycle 6 I was on the loo up to 9 times a day and throughout the night. The tablets they gave me didn't help because I just had stomach cramps with them. Time will tell how this reduced dose goes ... I asked Registrar about a scan and he said they wouldn't even consider it for some time to come. However, I'll argue this point when I next go, as I was in Eribulin for a short time and now Cap, and I haven't been scanned for a year so I want to know if all of this is working. As it's in my bones and liver, I have problems walking and I just want to say that I finally admitted it and bought a mobility scooter. It's the best thing I've ever bought. When I finally gave in and ordered one (£319 from Lloyds Pharmacy, takes apart and fits in the car) I must admit that I felt like it probably feels when you stand up at the first AA meeting, except I more or less said I'm GrannyScouse and I'm disabled hehehe. We've managed a few short breaks to the coast and the places we've been to are certainly disabled-friendly, as are most people when they see me on the scooter. It's been fantastic taking the grandchildren to various parks and I can now get around with them, instead of finding the nearest bench and plonking myself on it with my book while they went off enjoying themselves. Good luck to us all xx ... View more

Hello ladies Marilf, hope your anaemia is easing up and you're getting some strength back. If you let me know what time you're at clinic next week, I'll get there an hour earlier and we can have a cuppa. Mind you, I'll have to confirm on the day as, if history repeats itself, I'll either be on the loo or in bed with fatigue. I was at clinic yesterday. Blood count is still low but within normal range. Liver and kidneys doing well so they gave me more tabs. At 2500 x 2 daily I was really hoping they might reduce it but no, I'm stuck on this dosage for awhile. I could really do with some help on diet here. I'm not eating much, can't face meat of any sort, but eating a lot of fish. Friend suggested I cut out dairy for awhile as I've had the big D most days. The only time I took the anti-D tablets I was up half the night with stomach cramps, the only time I've had them. I could do with food to boost the red and white blood cells. Hands and feet are doing well and I'm lucky in that I've had no other side effects. Good luck to us all xx ... View more

Hi Marilf It seems we have the same onc. And we were both at the same clinic at the same time! I was seen in the same room as you were about an hour later than you!! Only just found out how to post on this new setup. I simply have to login!!! Will post again about how my treatment is going. Now on cycle 3 and no real side effects, except that my blood count is low but not low enough to curtail treatment. Good luck to us all xx ... View more

Thank, Marilyn, you've put my mind at rest. I've finished my work now so there's no putting it off any longer. I'll have to start the tabs tomorrow. And as you rightly say, you're the living proof that they work, 8 years down the line, and I'm pleased that things are still good for you. Yep, I'll keep an eye on the meet-ups thread and hopefully get to the next one. Good luck to us all. ... View more

Hello Ladies Well, Eribulin is in the past and Xeloda's my future for the foreseeable. Except I can't bring myself to take the tablets!!! I got them on Tuesday. I'm self-employed and had hoped to clear the decks of work before Tuesday but it didn't quite happen. I should be able to start on the tabs tomorrow (but don't tell the onc I've delayed it!). I'm on 2500 twice a day, which came as a complete shock to me. It didn't even occur to me that I'd have to take more than one tablet twice a day!! How on earth can I shove 5 tablets down twice a day if my side effects are making me feel so crap?? How do you all do it? It's one thing to have chemo intravenously and then feel rough, but to swallow tablets knowing they're going to make you feel so unwell isn't, well, natural is it? I've been positive about this cancer since being diagnosed in late 2005, but this tablet malarky has really knocked me for six. I love the new look site. Thanks, techies xx Good luck to us all. ... View more

Hi ladies I have to gracefully withdraw from this thread and introduce myself on the Xeloda thread. I was at the hospital yesterday at the end of my 6 week chemo break to be told I won't be going back on Eribulin. I'm not starting Xeloda for another 3 weeks though as it seems the onc wants me to regain more energy. So I'm going to enjoy the next 3 weeks and do as much as I can. Good luck to all who are still on Eribulin, and I hope it works for you. Onc did say that my liver tumours hadn't progressed so Eribulin was doing what it was paid to do. Good luck to us all. xx ... View more

Hi everyone I'm afraid I've just been a lurker on here lately. I'll post again properly over the weekend. It's been nice to read your reports. I've just popped in very quickly to wish tillycat a very happy birthday. I hope your day goes even better than it sounds, which will be wonderful. Gosh, 19 ladies going for brekkie! I don't think I know that many people!! Have a great day, everyone. xx PS I'm feeling a bit better halfway through my 6-week chemo break, and we're off to Nottingham now for a quick overnighter - got a good hotel deal. ... View more

Hey Laura My neuropathy started in 2007 with Taxotere. It stayed in my feet and ankles. Then when I started on Eribulin it gradually crept up my legs. I didn't mention it to onc initially as, like most of us, I don't mention everything. But eventually I did because to be quite honest I was feeling quite pooey for quite a few weeks. So I decided to tell him everything. He was quite shocked, I think. Said he hadn't come across the neuropathy thing, even said a few seeks ago he hadn't come across hair loss. Given all my symptoms, he's had to do something. At the mo, I still feel not too good but am looking forward to better times in the weeks ahead. Good luck to us all. xx ... View more

Hi ladies Tillycat, stay with it if you can as it appears it's doing its job for you 🙂 Me? Well, I should have started cycle 5 yesterday but the onc has given me a 6-week break. I've been feeling pretty rough these past few weeks and don't know whether it's from the cold I had at the end of Jan which appears to be lingering, or whether it's the chemo. I do know that the neuropathy in my feet (left over from Tax in 2007) has spread to above my knees now. Some days it's been difficult to walk. Onc said that's no good so not to go ahead with chemo yesterday and he's arranging for me to have a scan to see if it's been working. If it has, then I'll be able to go back on it in 6 weeks. I can't say I'm sorry not to carry on with it at this time as it'll be nice to be able to plan things over the next few weeks. Good luck to us all. xx ... View more

Chemo didn't happen on the Tuesday. Suite was so behind that they asked if I could go back on the Wednesday which suited me because I was so exhausted on the Tuesday that I couldn't face waiting around for at least 5 hours after I'd seen the onc. Was up most of last night with a hacking cough. Ended up trying to sleep sitting up. Oh, and weak bladder. Had to change the sheets in the middle of the night!!! I decided to go back on the steroids this time to see if I have a bit more energy. Not happened yet as I've been in bed all day because I just felt I wanted the comfort and security of my own bed. I got up a few times to brew up etc but didn't actually come downstairs until it went dark and I could shut the world out!!! My voice comes and goes. I don't know if this is a throwback from when I had a cold and cough a couple of weeks ago, or whether it's the chemo. But it's developed a kind of squeak to it. So, to sum up: pain in bones (not joints), cough resulting in weak bladder, squeaky voice, plus more fatigue. Sorry not to be more positive but want to tell it how it is so that some of you may relate to some of my symptoms. Good luck to us all. M xx ... View more

Hello ladies Just about to start Day 8 of C4 tomorrow. Got over stinking cold (and cough, thanks to Codeine Linctus). Didn't think cough was connected to chemo but on the other hand ... Fatigue is my biggest problem. I'm just glad I don't have youngsters to take care of like a few of you have. I don't know how I'd cope otherwise. Oh, and I've had some bone pain in upper and lower legs. Not joints, just the bones. Anyone else had similar? Seemingly I'm having scan after C6. Let us know how you get on. Good luck to us all. M xx ... View more

Hi everyone Hope you're all doing well. Gingerbud, hope your holiday went well and you've come back refreshed and ready to continue the fight the good fight. I finished cycle 3 last week. The same day, started with a stinking cold. Felt not too bad the following day, then voice went. I was in bed for 6 days!!! Absolutely no energy. I'm not sure if this was partly due to the cold weather (at least I was warm in bed and saved on heating costs!) but here I am on my week off and haven't any energy to enjoy myself. I'm just hoping stinking cold was due to the time of year and not the chemo. The good news is I haven't lost all my hair. I do tell myself any others that I now have bum-fluff but hey, better some than none. Any road up, hopefully I'll enjoy the Folk Awards at the Lowry Centre tomorrow if I get there. Enjoy whatever treats you have in store for yourselves ... Good luck to us all. xx ... View more

Hi everyone Glad you all seem to be coping well on this chemo. Gingerbud, have a great holiday - and I hope your hair stays on your head! Francescap, I too hated wigs and scarves but the price of the hair replacement!!! I know we're worth it but I honestly couldn't justify it - and I don't know that I could be bothered. I was determined to go commando this time round but I'm losing my nerve a bit. I've got an almost 14-year old granddaughter and I know they're very sensitive about things at that age, so I'll probs wear a hat or scarf when I see her. Also, I'm meeting an 89-year old uncle next week and he's got more hair than me! I've got an appointment with Headstart at my hospital tomorrow morning to try on hats and get ideas for tying scarves. I started cycle 3 yesterday. Onc is very pleased with how I'm doing ... but he did say I'm the only lady he knows on this chemo who has lost her hair. Well, I've still got some and I'm waiting to see if it goes the way of the rest of it. I'll let you know. I haven't taken the steroids again and don't feel any the worse for it. I also mentioned that I'd read Erubilin can affect the heart. As I have a heart condition, Onc sent me for an ECG yesterday. It came back clear, with no sign of my atrial fibrillation!! I'm not saying the chemo has helped it, as this condition is an erratic hearbeat and it could just be that yesterday I was calm and collected. What about treatment times at your hospital? Any long delays? Yesterday, my bloods were at 1pm, Onc at 2:30, chemo 5:30. With the chemo suite always being behind, I got seen at turned 8pm, home by 9. I was shattered! Seemingly, once the Onc gets clearance about the bloods, he phones through to have chemo taken "off-hold", it's made up offsite then couriered to hospital. This all takes 3 hours. By the time I got seen, delays at chemo suite were 2.5 hours 😞 Good luck to us all. xx ... View more