Breast Cancer Care Forum

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 ... View more

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 ... View more

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 ... View more

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 ... View more

Hi Carolyn.  Thank you for thinking of me.  Feeling very nervous at the moment.  I havent made any decisions yet until I have all the options they are going to throw at me.  I am so glad you are doing so well.  Long may it continue for you.  Hugs back to you.  Xx ... View more

Hi Nicky.  Good to hear from you as another'old timer'.  This is the one thing i have dreaded all along.  Am going to the hospital armed with information tomorrow.  I am certainly going to go away and think about what they say before I commit to anything at all.  This is all such new territory for me I dont know what to think at the moment.  All I know is that I feel ok at the moment and I really dont want that to change so that I turn into a vegetable, unable to do or think for myself. Xx ... View more

Hi Jodie. I have pmd you. X ... View more

Jodie, I am so sorry to hear about your jaw problems.  I have had ONJ since 2012 when I was on Zometa.  It started with two teeth which went bad.  I have been unable to have them extracted because of the ONJ, so I have to take antibiotics every few weeks when they get infected.  I was taken off Zometa and put onto Denosumab which I have every eight weeks.   I think it is a kinder form of treatment.  Sounds dreadful that you are losing parts of your jaw.  I see a maxillo facial surgeon at my hospital who seems to have kept mine under control.  I do hope you find the help you need.  I think there are more and more people getting this as life expectancy with secondaries increases.  I have a permanent swelling in my jaw on the side of the onj.  As if we havent got enough to contend with! X ... View more

Hi Carolyn.  I will keep in touch.  Horrible that we are both in more or less the same boat.  The news is still fresh to me so not coping very well.  Still waiting for onc/radiology appointment.  I want it, but I dont, if you know what I mean.  Lots of decisions to make.  Love xx ... View more

Hi Kate.  Yes, this is something I had considered, especially in the light of recent news.  It is part of the armoury I will take when I go and see the once, hopefully soon.  Thank you.  Will let you know if there is any hope there. Xx ... View more

Hi Debs.  Just looked on this.  Wow, what a positive site!  Thank you. Xx ... View more

Yes, I would be interested to know this too.  Have been doing lots of googling this weekend.  I know the hospital don't like us doing this, but tough.  I need to go armed with questions. Xx ... View more

Hi FF.  What would you do if you didnt want the wbr?   Would you try for a chemo that crosses the blood brain barrier?  I never realised that wbr could be so devastating. Xx ... View more

Hi M elinda.  As you can see from my other replies to posts I have never felt in such a quandry.  I am amazed that you are back at work after the wbr.  I am so worried that if I go for it I will never be the same mentally or physically.  I dont want to end up a shadow of my former self.  I really dont know what to do. Xx ... View more

Hi Carolyn.  I have spent all day wondering what to do about the wbr.  I am due to see the radiologist next week.  A lot to think about.  I hope you dont mind me asking, but are you happy at the decision you came to, and do you now feel some hope about all this?  At the moment I have never felt in such a bad place or so scared. Xx ... View more

Hi FF.  This has really given me food for thought.  I do neeed to have a good talk about this.  Who knows, maybe I can revisit cape.  It is worth a try isnt it.  A friend of mine who had wbr ended up dying of a stroke.  I dont want to go down that road.  Lots to think about.  Thank you. Xx ... View more

Thank you Annne 30.  Its a real shock. Xx ... View more

Hi Carolyn.  I knew you hadnt been on the forum for quite a while and sorry this is the reason.  I have been on capecitabine about five years ago, before these damn mets were discovered in my head.    Those were the days, mets oNly in bones.  Then it all blows up in your face.  I was interested to read that you didnt go for the wbr.  That has given me something to really think about and to try and find if there is another chemo that crosses the blood brain barrier.  I am due to go for,the radiotherapy planning next week and will go armed with some questions now.  I hate the thought of wbr.  How are you feeling in yourself Carolyn?  Love Ruth x ... View more

Hi Nicky.  Well, today isnt helping my stress levels.  Rain, rain and more rain here in the south east.  Good to know that you found Eribulin reasonably easy.  Do you know anything about the E+E combo, as that has also been mentioned for me. do you know if RFA can be done whilst I am on chemo? xx ... View more