Breast Cancer Now Forum

Hi TB 63, Do you have Lobular BC? I have just started Letrozole alone but don’t feel it has started working after a month. My mets are to various membranes incl omentum. Have tried Paclitaxel, Eribulin and Cape but haven’t heard of ribococlib Hope it’s working for you Jane x ... View more

Hi ladies I’ve just been taken off Capecitabine due to to progression (pleural and cardio effusion )after 11 months. I cut the finger tips of latex gloves off to help stop my fingers cracking. It works really well with Vaseline and then cotton gloves on top at night. My feet were bad too and shoes were a major issue - had to wear sandals all year - not great in Scotland ! I also had skin cracking behind my ears that I put down to my specs but Since I’ve stopped it’s gone away, so clearly an unusual SE ! Good luck to you all - all in all I felt pretty good and did so many great things while on Cape , wish it could have lasted longer. Oh well fingers crossed for a trial that I am eligible for Best wishes to you all Janie x ... View more

Hi Ladies Just updating as I have had progression. I had the usual peritoneal fluid build up that caused a much greater problem with breathing than usual (I couldn’t even walk across the kitchen never mind my usual march up the hill with the dog) It turned out to be fluid around the lung and heart, which apparently is classic Lobular progression. Had 4 litres drained last Thursday and I’m feeling a lot better now but very tired. I’ve been put in Letrozole while they try to get me on a trial as my options are running out. Apparently Letrozole could take a month to work so terrified fluid will build up in that time. I’ve always worked hard at keeping fit but it’s hard now as I’m still quite out of breathe . Any suggestions greatly received ! I hope you are all doing ok Janie xx ... View more

Hello  has anyone had raised liver enzymes while on Capecitabine? My liver function had been good for the last three years but has suddenly jumped over the last cycle. Been on Cape nearly a year now. I'm worried  the c has spread to the liver. Onc seemed puzzled and concerned and has ordered an urgent scan. Can't believe I didn't ask if it could be due to spread of cancer!   Hope you are all doing great    Janie xxx ... View more

Hi Jacksy and all, I have been gallivanting all over this summer, taking advantage of the few side effects on Capecitabine! Back home now and feeling like maybe it’s not working so well as I’m feeling bloated particularly in the evening. Very nervous as this has happened three times now and each time I have to wait while they do scans and decide the next treatment. Unfortunately during that time I am getting more and more uncomfortable until it gets to a point where it’s safe to drain it. ( there is a risk of piercing a vital organ) I have also started getting bowel issues - constipation but no pain fortunately. I think it’s maybe due to thickening of the peritoneum which they could see on the last scan. Jacksy - the bloating for me was the first sign that the BC had spread - it seems to resolve itself fairly quickly after changing each chemobut I’m wondering how many more options there are ! Hope you are all doing okay Janie x ... View more

Hi Linda Lynne and Kathy, It’s good to hear from others in the same position as me. I am trying to find out if there is anyone who specialises in LBC in the uk. I was given a name of Christopher Ring at the Marsden but haven’t contacted him yet. It’s been hectic as we are just off on our holidays. It’s good to hear you got a good amount of time out of palbococlib it could be an option for me, Kathy. I have been on Paclitaxel and Eribulin and now Capecitabine for 9 months. I got over a year out of the other 2 though. My main aim is to keep as fit and healthy as I can to stop the damage from the chemo and keep my immune system strong. I too notice a fluid build up before the scans pick it up. In fact I delayed the last scan because I knew there was no fluid and it was all stable thank goodness. I spoke to an alternative cancer specialist yesterday and he suggested lots of things I could be doing with diet , supplements, hyperbaric, infra red etc. Does anyone have experience of these treatments ? Hope you are all keeping well Janie xx ... View more

Hi I have secondary lobular  bc, diagnosed nearly 3 years ago.  Currently on Capecitabine. I would like to join please . ... View more

Hi Mulligans That’s good news, I also had to have my dose reduced because of hand and foot issues after 9 rounds and it’s made a great difference. They got better pretty quickly. Hope they recover fast in your break Jane 🐝 ... View more

He’s working on Zante in the quieter north end of the island. I’ve never been but he says it’s beautiful. Not going till early August so hoping I will stay ok till then ! Hope you have a wonderful time. Jx ... View more

Hi George Thanks for the advice, I emailed his secretary and he said s happy to do that if bloods are okay !! So excited as it means I can go and see my son who is working in Greece. Glad your scan results were good. I have one coming up soon. I have been on Cape for 8 months too but this will be first scan after six months. I feel really well (I have fluid build up when it’s not) so fingers crossed although you can’t help worrying! Janie x ... View more

Hello Everyone I was just wondering if any of you have ever been able to see oncologist and collect your prescription a few days in advance of starting them? My usual start day is a Tuesday but want to go on the Friday before so that o can go on holiday ! I’m guessing it might be an issue with bloods. Janie xx ... View more

Good Morning All, This is such a useful chat, I also had hot painful feet and lifting big toenails! My onc decided to drop me down from 1800 to 1150 which i thought was too low having read that others have been reduced to 1500. protested and they eventually agreed to go to 1500. So nearly through this cycle and feet are so much better. It just shows though that it’s worth being a bit more informed! Spring has arrived on the west coast of Scotland, heard first cuckoo and the swallows arrived today. Doing my yoga in the ☀️ hugs to you all 🐝 ... View more

That’s really interesting Moijan - I love mushrooms too, I eat a lot of them but will try to have them more often now. That daily dozen is great to put on the fridge door , especially for my daughter! I’m not sure about 3 portions of beans for me though !! Hope you don’t mind me asking but would you mind taking another pic of it so I can print it out ? I tried but it’s a bit squinty and I couldn’t read the top ! I’m definitely going to speak to Chris there’s really nothing to lose except if he says I should do something too complicated as I already spend a lot of time cooking and just keeping myself as fit as possible! Thanks Janiexxxx ... View more

Hi Moijan Did you have a personnal prescription chat with Chris ? I have been following his advice as well as others and wondered whether I should go for it . Would you recommend ? Janiex ... View more

Hi Tatiana I have also eaten all those things that they tell you not to eat ! When I was on Paclitaxel the chemo nurse was horrified when I told her I was making a hot shellfish platter for a special dinner !i wasn’t given specific info when starting Cape so assume they aren’t so worried about infection/bacteria. I am a chef but also studied human nutrition and have a great interest in food as medicine . I follow a meat and dairy free Mediterranean diet (Chris Woolams) and i am sure it has kept me in better health. I still eat fish and occasionally have a little unpasteurised goats cheese( it’s good for the gut bacteria ) I think if you have always eaten certain foods you would probably be okay to carry on when on chemo . But it’s perhaps not the time to start eating raw oysters etc ! Hope you are all doing ok Jane x ... View more

HI Lozzer, I have had virtually no side effects particularly in the first few days . I get hot sore feet and my fingernails are more sensitive but that usually is in the last 3-4 days of taking the pills . I was told I should take anti sickness pills ( by the nurse) when I was in Paclitaxel and Eribulin, I forgot to take them I just stopped and one nurse was quite cross with me . When I checked with the onc they said it’s fine, Why take them if you don’t need them ! So I never even took one with Cape and have no nausea. I’m taking enough pills as it is with the 5 Cape and multivitamin s etc. Hope you have better weather than I do in Scotland x ... View more

Good morning, Welcome new Capies , I’m only on round 6 so quite new myself. When I start replying I can’t remember who asked questions so it’s a general reply! I dyed my hair with a semi permanent and it’s been fine, I love it although it was a bit bright at first. my hair was coming in rather grey rather than a lovely platinum as it had been on Eribulin. I have defied my onc for the last 2 years of mets and haven’t taken it easy at all. I was told go for gentle walks But Unfortunately I live halfway up a mountain and the dog did not approve so that went out the window straightaway! And then I climbed a Munro ! (Scottish big hill) I was also told not to swim or eat shellfish both of which I have done. I got a full face mask from decathlon, meant for snorkelling and I can happily swim 30 Lengths with it. You have to ask for pool attendant permission to use it and you look like a weird sort of alien with it but it’s worth it ! I’d post a photo but don’t know how ! If you do get one - getting the right size is important. My feet are peeling disgustingly at the moment but feet weren’t so bad last round. Hot and sore for just the last 2 days of pills as a posed to 5 days on the previous round . I wore flip flops for most of the time and I’m sure that helped . (Not great in a Scottish farmhouse) Hugs to all Janie xxx ... View more

Hi George Glad you are feeling better ,the same happened to me last Christmas. I ended up in hospital in the middle of the night with a fever . They did the all tests in the night and was home in the morning. I was very impressed, got Home in time for Christmas Eve although my husband did the shopping which was a bit of a disaster 😮 I was waiting for results of scan since 5th Dec . I’m not sure scans show up much with me. All they seem to do is confirm the amount of fluid in Peritoneum but I can feel that anyway . Hugs 🤗 Janie xxx ... View more

All stable, no change thank goodness,they are keeping an eye on my feet 😀 xxxx ... View more