Breast Cancer Now Forum

Really appreciated reading your story. So happy that things have turned around for you and it encourages us all!  Peggy xx ... View more

Hi Mermaid, I hope you are having a good week. Is it your week off? I saw you mentioned thigh pain and I've had that for the first time this week after walking more than usual, too. No idea why but ibuprofen has been helping.  You do have a lot to get your head around. I think it goes up and down. Sometimes you can distract yourself and other times it is overwhelming.  The routine of this chemo has settled down enough for me to book things in my week off. Our family went away for 3 days last time. And next week I am doing a short trip with my Mum to see Highclere Castle (Downton Abbey). I'm trying to make the most of the better weeks and the low number of covid cases at the moment (at least where we are). I hope you can do some things you enjoy too. Take one day at a time and its surprising how they add up! Bless you, Peggy ... View more

Hi Mermaid, I can't say anything about your diagnosis or treatment but I hope your oncologist can answer your questions. I am also on Eribulin. I started a few months ago. To start with my treatments were delayed each time because my blood counts were too low. But now I am on a 60% dose (ie lower dose) and treatments happen regularly, 2 weeks on one week off. I use a cold cap because I wanted to give my hair the best chance (some ladies get thinning). It makes a 5 minute treatment more like 2-3 hours because you have the cap on before and after the treatment but it is working for me and I am glad for that. Side effects are pretty manageable. I feel quite foggy-headed for a couple of days afterward and don't do much. But then I start feeling better. No nausea or sickness. Constipation for a few days which can get a bit uncomfortable. Probably the best bit for me is that I had quite a few symptoms - fever, fatigue, cough - from my cancer but that has all improved a lot. So overall, I find it manageable and I'm thankful I feel much better than I did before. I hope that helps and happy to be your Eribulin buddy for a bit of moral support. It is tough not knowing how well a treatment will work but I am thankful it is going well for me so far and I pray it will help you, too. (I edited my original reply because I saw your earlier posts and realised more where you are at and how difficult the last few months have been for you. My treatment stopped too and it was a really tough time. I really hope Eribulin works well for you.) Peggy xx ... View more

Thank you everyone for your replies. I had my day 8 dose about 10 days ago. I find that the day after I am fine but then I am really sleepy. I slept about 36 hours, waking up occasionally. I think it might be the steroids as I have had that reaction before. I think I might ask to reduce them or maybe not even take them. My hair is thinning but nothing noticeable yet. I'm still daft enough to use the cold cap but like you said, Sian, it makes a quick treatment very long! I enjoy the peace and quiet with a book. I'm not sure if it is helping or not but glad my hair hasn't changed much yet.  I'll see what my bloods are like this week before my next Day 1. If they are bad again I'll ask again about the injections.  I also have to have Covid swabs now. Not sure if that is because of chemo or because I am about to have a Port put in. They are pretty uncomfortable but quick. Anyone else had a Port? I am hoping it won't be too difficult getting it put in. I hope you are feeling okay now about starting your new treatment Sian. The ups and downs are really tough. We just have to keep persevering. Really appreciate everyone's replies. It helps hearing others' experiences of Eribulin.  ... View more

Hi there Daker, So sorry to hear about your pain. It really is the worst symptom. I am hoping that now you have started the bone injections you will find some relief from those too as they really help the bones. But for now, I agree with others about how helpful the hospice has been with managing pain. They seem to specialise in managing symptoms like pain, and not just end of life care so don't be put off. I have recently been put on a butrans patch, lowest dose and that has been a big help, and no unpleasant side effects either. I also have oromorph for the odd occasion when pain is worse but that is very rare at the moment. Hope that helps, and praying you have some relief soon, Peggy ... View more

Hi Nicky, Thanks so much for your reply. I was wondering about both the things you mentioned! I haven't spoken to my oncologist yet but will ask her. I am keeping an eye on my hair and we'll see what happens! Seems like it might be thinning. I don't know anyone else who has had eribulin so really appreciate your feedback!   Peggy ... View more

Hi Nicky, I wanted to write and say thanks again for the eribulin info. It has gone pretty well so far. The best bit is that I have felt much better since my first dose. I don't know why but it feels great after a rough couple of months. I had to have my first blood transfusion because my hemoglobin was low. It is still only 80 but that's good enough. My day 8 dose was also delayed twice because my neutrophils were low but they have bounced back now and I had my day 8 today. Apparently, they won't use those injections with me to boost the blood cells because I am in the palliative stage. I was also offered a cold cap which adds 2 hours to the process and the chemo only takes 5 minutes! But I decided to try it and so far I haven't lost any more hair than normal. We'll see. So a mixed couple of weeks. So glad to be feeling good though and able to join in more with family life. Not sure if it is the chemo, the blood transfusion but I thank God for his gifts, on the good days and the bad days. Hope you are having a good week, Peggy  ... View more

I am new to the forum but I really appreciate you sharing, Ramade, and I pray you are comfortable in these weeks and have special times with loved ones. I am on Eribulin but have just had it delayed for a week due to low neutrophils. I am not sure if my oncologist will use those injections. They haven't been mentioned and she is reluctant to make me endure too much treatment as I am getting to the end of the benefit of treatment too. It all feels quite uncertain but also peaceful. I am so exhausted from treatment. It has been five years for me so far. But I would like to go for as long as possible for my daughters and husband. I have a couple of questions - did anyone else have the injections? And also, is anyone making any changes in terms of seeing people these days? I am shielding but I am thinking of changing that if my treatment ends.  Thanks so much, bless you all, Peggy   ... View more

Dear Nicky, Thanks so much for that info and also for info about steroids and those injections which I forgot to ask about. I have read that thread but will read it again. I feel nervous about starting a new chemo and I don't know anyone else who has been on it. So thanks so much, you've helped me feel more confident. Peggy xx ... View more

Hi there, so sorry to hear your news. I'm probably not the best person to reply as I think there are others who know more but I saw your post and wanted to respond so you don't have to wait. It is always a tough time when a treatment stops working but it doesn't mean the next one won't work well. I know of ladies who have been on Capecitabine for a long time. I was on it for a year but others I know were on it for longer. It was also pretty easy to live with - I needed to moisturise hands and feet every day, occasionally had diarrhea.  This is the worst time for you, having heard bad news and waiting for new treatment to start but I hope you find capecitabine easy to live with and that it works really well for you. Riding the rollercoaster is really tough but getting bad news doesn't mean that you won't hear good news next time you have a scan. That has surprised me on this journey. (I've had sbc for five years) Bless you, Peggy xx ... View more