Good afternoon everybody and welcome to the newbies - I am sorry you have had to join but I have found the site a godsend, everybody is so welcoming. I do not post very often but always read everybodys posts which gives me inspiration and hope. I was diagnosed with primary and mets to bones over 3 years ago now and like Pam have continued to enjoy life with the cancer travelling to Australia and Japan since diagnosis. I no longer work but keep myself busy with volunteering - almost a full time job at times! Following progression to lymph nodes in chest I have had 6 rounds of chemo plus herceptin and perjeta. The treatment finished a couple of months ago and the end of treatment scan was very positive with no activity seen in bones or lymph nodes although there remained a little fluid still round my lungs. I also felt very good with no pain. Treatment continues as herceptin and perjeta although I am no longer on denusomab or any hormone tablets. Over the last week or so I have started to have pain in my ribs and around my neck so think probably herceptin and perjeta is not working totally. I just wondered whether any other ladies who are on herceptin / perjeta have this on its own or whether they also have a hormone treatment. I am due to see my oncologist again in a couple of weeks so collecting as much information as I can. Thank you ladies and best wishes to you all - you are all amazing!xx
Hi ladies and a warm welcome to anyone newly diagnosed. There is a lot of acrtivity on this thread at the moment and it's great to read what everyone has been up to and feeling sorry for all those with a few extra hospital visits or even overnight stays - not what we need.
I seem to miss out on all the late posts in the evenings so I apologise for not rememebering everything!
Helen - glad you ahve moved hospital and hope Cape works well for you. I also got a few desperate dashes for the loo at times whilst on it but it did settle down and didn't really cuase any problems. I found in the first couple of times on my week off I also suffered with diarrohea (sp?) on the first day off tablets but, again this didn't happen after those times.
Chocolates - do keep an eye on your heart and feel free to PM me if you want any info about what I had. It was definitely brought on by chemo and has taken a long time to sort out. I see one of the best (if not THE one) cardio-oncologists in the UK and he has worked wonders
Belinda - I do have to smile when I read your posts George Clooney - what are you like? I can just imagine you staring out of your window, downing tablets whilst George is pottering in the garden LOL
Take care all other boney and other ladies, sorry if I've fogotten too many ladies.
Thanks Pam - I love your attitude and great to hear about all your travelling! I have just come back from a cruise around the Adriatic which was lovely.
Morning everyone from a miserable and damp south wales!
Welcome to the newbies.
I waas diagnosed with secondaries in my back 31/2 years ago. Initially treated with hormones (after emergency radiotherapy) for a year, and then after some progression switched to capecitabine which has held things stable for 21/2 years (and im trying to emulate those who have been on it much longer!).
For the newbies I thought I would talk about some of the thing I have done since secondary diagnosis!
Several cruises to eastern med and western med (and last year to Israel). Trips to Prague, Barcelona, Palma, Budapest, Granada. this year Ive also had a number of holidays in this Country including a study week in Cambridge, and a trip to my sons graduation in Glasgow. This last weekend Ive been in London seeing the plays "Wolfhall" and Bring up the Bodies"....both fab.(added excitement because Hiliary Mantell was in the audience)....also went to Kew Gardens for the first time which was wonderful.....This weekend (and other times) I have suffered with painful feet and sore hands because i was trying to walk on them more and that seems to trigger hand foot syndrome, a side effect of the capecitabine, but I managed and had to use the tube a bit more than I would have before..but hobbling this morning!
I still have down days...but that is not constant as it was in the beginning......and a lot of the time I am able to do things and enjoy them......
Many others of us are juggling work as well but I decided to take ill health retirement a couple of years ago.
I hope the newbies take from this that life can go on and that there can be good times even after a secondary diagnosis.......but it takes a bit of getting your head around first...
Must go cos Im going to get bloods checked this morning and an appt this afternoon (followed by denosumab friday)....thursday my mum has an appt for blood tests in Bristol...she also has secondary BC at 92!)......ho hum must also try and fit in enjoying my son who is home for a few days before returning to his studies!..........wednesday is day out day with him!......best wishes Pamx
Hi there everyone. Just been reading your updates and I am pleased to be able to join in, it's nice to know that there is a little group like this that is supportive and informative. I had some time in hopsital recently with high calcium too, and I was the same as Sheila - nausea, tiredness, muscle aches. Initially this was put down to the pain medication, but my GP decided to search for other reasons. Thankfully she did, as mine were dangerously high as well. I am having my first blood transfusion tomorrow, as my hb had been hovering between 80 and 90 but has now dropped to 76. I am actually feeling a bit rubbish, tired and nauseous, a bit like high calcium. Has anyone else had this with anemia?
Hi everyone, thank you for all your good wishes. I feel as if i have a whole new group of lovely friends. I will keep you informed of the goings on. Yes Janette, the nurses are brilliant! I feel so much better. I would say that my symptoms were weakness nausea, very queezy and all of this getting worse by the day. I actually slept on and off for 14 hours the other day, got up at 9 pm to try to watch TV a bit but had to go back to bed. I thought at first I must have still got anaemia but the when the onc told me my liver had progressed l thought it must be that. Anyway apparently your calcium levels should be 2 -5 and are considered dangerous at 3 but mine were 4. If they hadn't spotted it I felt that bad that I might not have made it to chemo.
Hoping to feel better soon. Have got tickets for the Jersey boys in three weeks.😀
Will be back soon. Take care you lovely lot. Love Sheila. Xx
Hi Sheila, sorry you've had to spend the holiday wekend in hospital but it sounds like they're looking after you there and making sure youre on the mend.
Hopefully you'll be out shortly and feeling much better.
love and hugz.....bev xxxxx
Hello everyone. Hope everyone is doing OK. I am only doing a short post as I am not sure if it will go. I did a long post last night but it didn't go!
I am in the Christie. Got home from clinic Thursday. One hour later I had phone call room bcn to say I had to go to medical ward asap.. I had high calcium levels. I had been feeling worse day by day so was glad to go! Morning after, my onc rand the ward and wanted me down at christie so transferred. Been treated to that and almost back to normal. I think I may be starting new chemo tomorrow and staying in for a few days to see how I react. Def felling better though.😊 pleased to say staff are lovely.
Will post again when I know this has gone. Good luck to anybody waiting for results and treatment. Haven't read all posts yet. Too tired but improving every day. Love to all. Sheila. Xxx
Hi Helen, you are right my treatment used with Aromasin is a Hormone treatment, my nurses keep calling it my Chemo treatment, on day 2 and feeling quite good. So relieved you have a good Hospital, it must feel such a joy to deal with people who know what they are doing.Love and Light xx Mavis