Triple negative BC with bone mets

Hi there, I am new to this site. My lovely Mum had a mastectomy and axillary clearance (12/12 lymph nodes involved) on 14 March, having had a routine mammogram in Feb. She is 69. We found out about a month ago that she has triple negative BC and this week that it is in her bones (ribs, pelvis and neck). She is due to have a bone scan soon (and CT of brain) and we go back on 14th to see her oncologist re whether to have chemo. I have gorgeous siblings/friends/family, but we are all in shock… has anyone out there had a similar experience…could you give me any help? Mum is an amazing person and is being strong for all of us we think! I guess these things take time to sink. Look forward to any feedback, J

Hello Margot
So sorry to hear about your mum and sorry too that you have had to wait so long for a response. I expect you have gathered that the site has been a bit on/off while it has been relaunched in this new format which we are now trying to get used to.
It sounds as if you have had a really tough time with your mum’s diagnosis and she is fortunate to have you and your wonderful sounding family to support her through this. You have come to the right place for cyber support. Others of us with TN BC are here to listen and help if we can. The thread that I have found most relevant has been the “triple negative/secondaries recurrence” thread started by Gingerbud who we lost a couple of weeks back. The thread is in shock, but we are a friendly bunch and are beginning to post again. We include people who are supporting someone with TNBC who post from time to time. Please join us. I had my secondary diagnosis in December 2010 and had chemo last year and more going on now. I think I am the oldest member of the thread at 56. It is unusual I think for TNBC to be diagnosed in us older women.
The Bone Secondaries thread is great too and some very knowledgable people there, so check that out too. You may find other “supporters of people with BC” will join you on your new thread, but please visit us on the TN secondaries thread. You will find support there.
Take good care
Tara xx

Hello Margot, I am not a TNBC lady but I do have secondaries in my bones in my pelvis, ribs spine and thorax. I do not know if your Mum is in any pain from the bone mets ( some people are not) but i did have pain and there are many many good painkilers which can help if she does. There are also drugs called Biphosphonates called Pamidronate, Zolidronate(also caled Zometa) which can be given through a drip or pills of a similar drug called Bondronate. These drugs help prevent bones from breaking. I am on chemotherapy which is in pilll form and is very doable. It is called Capecitabine (or Xeloda). I am sure that this is far too much information to take in right now but I just want to show that there are drugs out there which may help your Mum. I got diagnosed with bone mets 13 years ago and am 62 now, When I was first diagnosed with secondaries I thought my time was up. But I have been lucky in having a god response to treatments. I wish your Mum well and do let us know how she gets on with her next appointments. One thing I woud suggest is that someone go along with her to her appointments if possible as sometimes it is difficult to take in all that is said. Also write down a list of any questions you have before you go. You do not need to ask them all but at the end of the appointment you can check that you have covered everything. Val

Hi Margot
As well as the support you receive here, please feel free to give the BCC helpline a call to talk through any questions you may have about your Mum’s diagnosis. The helpline staff are there to offer a listening ear as well as emotional support and practical information. The number to call is 0808 800 6000 and lines will open again on Tuesday morning at 9am and are open weekdays from 9 to 5pm and Saturday 10 to 2pm.
Best wishes Sam, BCC Facilitator

Thank you Tara, Val & Sam for your really helpful comments/tips/support. I’ve been meaning to reply but due to the website being in its development, it has been impossible til now. Also, I was so sorry to read about gingerbud - she was obviously such an inspiration & friend to you all. Very tough.
Am definately going to join the threads that you suggest, so thank you for those.
Mum is anaemic, with an Hb of 8, but fortunately has some iron tabs & and also she has an appointment on Monday with the oncologist, so if need be they can give her a blood transfusion. I suppose, now, our anxiety lies with the discussion on Monday. Will oncologist suggest chemo or not? How will Mum react if chemo not suggested? I did want to prepare a little for the outcome (in case) by having a chat with her oncologist on the phone today, but unfortuantely she was off sick. So, it will be another deep breath! How do you all cope with appointments?
Many thanks
Jane (Margot10)

Hello again Jane (margot10), If your Mum’s Hb is 8 they may well suggest she has a Blood Transfusiion. I have need a few of these transfusion recenlt and they made such a huge difference as I could breathe more easily, had more eneergy and it also cleared my head and allowed me to think more clearly somehow. I hope all goes well on Monday. Sorry that you didn’t manage to have a chat with her Oncologist. Let us know how the appointment went and what treatment they have recommended. Love Val

Hello again all.
We had a positive consultation today. Fortunately, Mum doesn’t have brain mets, just a few spots on her skull which was suspected anyway. She is having a blood transfusion on Thursday, which I’m sure will make her feel better. She is also having an injection called denosumab, instead of pamidronate. Her consultant feels that chemo will make her feel better so thats due to start next Thursday…yet we really were not sure whether she would or wouldn’t. We thought there was more gloom to come so its great there isn’t today.
Its all still so new and strange for us all, so much has happened in 3 months. Mum has been keeping her anxiety bottled up (doesn’t want to worry/burden anyone) but it was a breakthrough today, when she admitted that it felt like her blood was ‘cold’ this morning and had this overwhelming ‘dread’ about the appointment. She must have felt really awful as it has to be awful for her to say anything! She was a bit sick when she got into my car, but it passed quite quickly - perhaps anxiety, lack of sleep & the disease itself. She has now got some domperidone in case.
Another good thing was that we had the opportunity of chatting to other women on their varying journeys and had quite a giggle in the waiting area! We are definately part of the whole cancer thing now - that probably sounds very strange & naive, but we were ushered to the Macmillan centre for coffee while we were waiting for various appointment times. It still felt so strange but what I want to know is why is there never any warning?! I am a nurse and it is so interesting being on the other side!