Breast Cancer Now Forum

What's up Natasha (apart from the obvious)? You have been thru so much and still going thru it so will have dodgy days. Sometimes best just to go with the flow and have a duvet day. Big hug coming from me, we understand. Hoping tomorrow is a better one xxx ... View more

Val and Lemongrove - have written on the Xeloda thread with a thank you. This site is a disaster ... View more

Bump. Frustrated. I want people that have helped me know that I have responded to them, but the thread just gets lost. ... View more

Thanks for all your comments ladies. Val you have contributed so much to these forums over the years and help sustain many of us , yet I know you have your bad times too. This is the double-edged sword of forums like these, great to hear the success stories but difficult to read of disability and the loss of some members. Lemongrove, thank you too for your knowledge and passion, you have been a very supportive member over my years with BC (Dx 2009). I find it very sad that so many of the long-standing members have all but given up with the site now. it was a lifeline to me thru my primary treatment, and now as a secondaries patient I still need and want to give support. Even though most of us do not know each other, you start to feel that you do and wonder how people are getting on. I have joined a private FB group which is great but I still wish BCC could get this forum back on track. I saw my Oncologist yesterday and my CT scan from 3 weeks ago was not reported on so more waiting. Seemingly no appreciation of the anxiety caused by waiting for results. Last bone and CT scans 3 months ago showed progression in spine and ribs so we are waiting on the results of this one to see if Capecitabine should be stopped and to try something else. He also said he had not written a letter to my GP after my appt 3 weeks ago, when he had to address my complaint about being given my chemo prescription in the waiting room by a HCA when he hadn't bothered to check my bloods. My white count was too low for chemo, I only found out when phoned later that evening by the duty pharmacist. So, very conveniently, there is no written record of the c - up or my gripes about not getting test results or letters. No record of my nails coming off, the lack of privacy , no record of him telling me I only had one chemo option left. He said he would put me down for discussion at the MDT meeting next week, but he said that last time, and he will be away next week so how I can be discussed without him there I don't know. He did order an urgent MRI of my spine as my leg went numb on Monday. He was organising this and asking me questions whilst my husband and I were stood like lemons in his office, no chairs for patients to sit, and one HCA was talking on the phone about another patient whilst another HCA kept coming in and with notes notes. I have never treated a patient this way in all my 30+years as a nurse. I don't want to change to another Oncologist at this hospital as I already changed last year when my then Oncologist told me my CT scan was clear then called me back a few days later to say I had extensive mets to bones. Her attitude was that of hopelessness, which is why I had a second opinion at the Marsden. I think part of the problem with my current hospital is that it serves a very large county in the East Midlands and they are overwhelmed with patients, but that is no help to me. The constant battle to get decent care is so wearing. Must get that transfer underway, just wary of finding the same crap service. Best wishes end thanks to everyone x ... View more

Ps by saying I am "challenging" my Oncologist, does not mean that I am rude/loud/shouty etc! I try to be assertive and want my test results and to be treated as an adult. He doesn't like that. ... View more

Thanks for your comments guys. Nina, I challenge my oncologist frequently! He treats me as if I'm a bit of a nuisance for asking, but as a nurse I want to know the ins and outs of everything. My feeling is that my present hospital in the East Midlands does not do much for us Secondaries ladies, I feel written off and uncared for. Ann, I just asked my GP to refer me for a second opinion at the Marsden, they suggested some treatments but it is too far for me to transfer there. However, I do I intend transferring to another hospital about an hour from where I live. The set up seems very different and they have a secondaries specialist nurse. My present Onc never asks me about pain, or side effects from the Capecitabine, and when I tell him he just says stop the chemo then. He has even told me in the past that there are people worse off than me ( as if I don't know that) and said to my husband that if "she's going to be like this" (i.e. upset and challenging) there's no point in treating her". Hmm, very caring. I have just come back from our local hospice/treatment centre, having had a head massage and they are so caring there, but it makes me so emotional. I HATE being a patient, am so used to being the nurse! Oh well, will see what my latest CT scan shows up tomorrow and take it from there. Have already had Vinorelbine in combo with Capecitabine (don't understand why my Onc gave me both) but was unwell with it, dropped my neuts, ended up in hospital. Feeling so vulnerable. Love to all you lovely people. Thanks for taking time to reply and support when I know you all have troubles of your own. Xxx ... View more

Thanks Louise x ... View more

Morning everyone. Am feeling quite distressed reading comments about chemo not working for bone mets. I was diagnosed with extensive bone mets thru all of spine, ribs and pelvis in June 2011. Arimidex then Exemestane failed to halt rising tumour markers so my Oncologist at the time prescribed Ibandronic acid and said basically that was all she could do as chemo was ineffective for bone mets. I had a second opinion at the Marsden then changed Oncologist at my local hospital, and have now had 14 cycles of Capecitabine. My tumour markers have come down to normal levels but CT and bone scans both show further bone progression. Onc is not sure what is going on. Have appt tomorrow for results of latest CT scan 3 weeks ago, Onc said he might change me to my last option - Epirubilin. But what's the point of putting up with the side effects of chemo ( even if Capecitabine is a more doable one, still doesn't make me feel great). Should I say no more chemo thanks and see what happens, only that would feel like I'm giving up. I hate this disease. No pills available for fear, uncertainty, and general p...ed - off! Best wishes to everyone - still keep visiting this site, hoping it will improve .... ... View more

crisp1e - I am/was a nurse for over 30 years but only had 8 years worth of NHS pension (due to working in industry, abroad etc). I retired last year age 56, when I was diagnosed with bone mets. I managed to get my pension enhanced, not reduced for retiring early due to ill health, and had the lot paid as a lump sum. The RCN were very helpful with advice. It has made a huge difference getting it this way and enables me to tick over with just my DLA coming in. ... View more

Thanks for responding. Have sent you a pm ... View more

Thanks for replying Gail5. Seems I am in a minority with losing my nails. Its agony ... View more

Can anyone here help? got no response from Cap ladies on bone mets thread, lots of people deserted the site due to all the mess it seems! I am on my 14th cycle of Capecitabine (I have bone mets) and am starting to lose my nails again. I lost all my finger and toenails in 2009 when I went thru chemo and had Taxotere and Capecitabine as part of a trial. It made life very difficult. Oncologist just shrugs it off, says dose reduction would not help and only option would be to stop chemo. Presumably, my nails won't grow back this time if I continue with Capecitabine so has anyone else experienced this? Are there any specialist nail places who would be able to fit gel nails or something? Got plenty of help when the hair went AWOL last time but no help at all with the nails. I had to soak them in iodine, tape them down to stop them catching,wear latex gloves when cooking, washing, going to loo etc and cotton gloves in between. Thanks in advance. Best wishes to everyone x ... View more

Hi everyone, have been following this thread when I can but the site is so tedious these days. Please can I ask for some comments. I am on my 14th cycle of Capecitabine, 1800mg twice daily. Tumour markers have reduced to normal range but bone and CT scans 3 months ago showed progression in ribs and spine (already extensive thru bones), nothing elsewhere. Side effects as expected except am starting to lose my nails again, toenails I can handle but fingernails just so difficult to cope with. Oncologist just said stop the chemo then, said dose reduction wouldn't make any difference so the choice was mine - no nails or ...... He said I was running out of options for treatment and that Eribulin would be my last choice. I don't quite understand this from what I read about others' experiences. I'm not willing to have IV chemo again at the moment though anyway, if I do get further spread to liver etc what is left? I have little faith in my team so am looking at transferring elsewhere. Already had 2nd opinion last year at The Marsden but a long way for me to travel. Anyone at Addenbrookes or Peterborough? I wonder if Vit D and calcium supplements would help or B12? Has anyone else had the nail problems? Off for yet another CT scan now, then back in the waiting room for 3 weeks.Best wishes to everyone x ... View more