02-01-2019 06:48 AM
24-12-2018 09:42 PM
Just wanted to wish you all a happy Christmas. Lets all try and forget about this rotten disease over Christmas. I wanted to thank you all for your words of wisdom over the past few weeks. I am still suffering with the after effects of the wbr. I have scans at the end of January to see if the wbr and the Eribulin are working, but I can't even think about going there at the moment.
Melinda, your experience of wbr has given me real hope.
Love and hope to you all. Let's hope next year brings some breakthroughs in treatments. Will post more after Christmas.
love Ruth x
14-12-2018 10:35 AM
Hi Nanofthree, how are you feeling today ? I had WBR at the start of the year. Felt weak and wobbly for a few weeks and very numb inside regarding feelings. This I found was the worst part afterwards, I just couldn’t get back into my life, almost like I had shutdown. Thankfully I woke up one morning and felt a whole lot better, I returned to work and as a family we are having lots of trips away and enjoying fun things. I am scared but I try to keep my mind active and not let it bring me down. Xxx
13-12-2018 10:32 PM - edited 13-12-2018 10:35 PM
Hi Nanofthree, afraid I don’t personally but remember someone posting they’d had it and were doing very well, did you see that post? Isn’t it early days at the moment for you? Try to stay positive as I believe it helps, so many of us are thinking about you, sending you a big hug, much love Kate x
I’ve just looked back through the thread and Melinda posted about her experience on 4th November x
13-12-2018 10:14 PM
Thank you for thinking of me everyone. I am doing ok but get so scared. I do hope I have done the right thing by having the wbr. The after effects are quite hard and they say these could carry on for a few weeks but I am feeling less wobbly now. I had my second Eribulin a couple of days ago, which left me very tired but am fine today. Please does anyone know of anybody who has gone through this and come out the other side with a bit of life left. I am so scared at the moment. I dont want to give up yet. Xx
12-12-2018 05:58 PM
Hi Nanofthree, it’s really good to see you posting on the forum again, I had, like many others, been thinking about you. I see you have a festive birthday like me. I hope everything settles down for you and you have a happy Christmas and enjoy your birthday. Kate xx
12-12-2018 02:42 PM
How lovely to hear from you. I do hope you cope with the after effecs of WBR, I know from meeting ladies who had this a few years back how it can affect you more after it has taken place than whilst you are having treatment. I do wish you and your family a very happy christmas and hope you can enjoy all your times together including your big birthday.
09-12-2018 07:19 PM
09-12-2018 05:33 PM
Thank you Carolyn. I wondered how you are getting on. Is the Capecitabine still working its magic for you? I kind of withdrew from everything when I started the wbr but now I am determined not to let it ruin my life. I dont know what is round the next corner, I guess none of us do. I am 70 on new years eve of all days, then my golden wedding on 29 March. I need to aim for these. Just short steps! Take care and I really hope you, and indeed all you lovely ladies, are ok. Xx
09-12-2018 05:29 PM
Nanofthree, You are very brave! Sounds like you are doing well after it. I'm sorry life has changed. I think the changes we go through with this are scary. Things we never thought we would have to do so early in life! Keep in touch if you can. FF
09-12-2018 02:16 PM
08-12-2018 09:59 PM
Hello everyone. Sorry to have been away from the forum for a while. You are right, Carolyn, I did go for the wbr in the end. Five treatments, finished 12 days ago. After I thought about it very carefully I dont think I had a choice. It wasnt as bad as I thought it would be, though the side effects will get worse before they get better apparently. Main problem is feeling wobbly especially in the morning, but not sure if it is the steroids causing this. They have now been reduced and that horrid puffy look is going!
i have just had my first treatment of Eribulin. So far so good apart from the normal fatigue.
My hair is starting to fall out now. Not sure if it will all go but I suspect it will.
So I dont really know where I stand and dont want to, to be honest with you. I have read some dreadful and frightening things and also things that give me hope. I suspect I will continue to bury my head in the sand!
Anyway, would love to know how everone is getting on. Love to all xx
ps. Unfortunately I am no longer able to drive and cant be left alone in case I have another seizure, so life is very different now. Xx
07-12-2018 05:05 PM
13-11-2018 08:30 AM
We will all be a big circle of hands holding you. I hope you get some good answers to your questions today and you have the time to make the right decision for you, and your family. Thinking of you from one old timer to another 😉