Maxine

Hi Chrissey, We are such strong people, with all the challengers that are thrown at us and we beat them down. The continuous hurdles we need to jump and as you said we need to take each day as it comes and to take the bad days with the good and go with the flow. I was lying on the CT table being mapped out for yet again more radiation and I thought to myself, "what are normal people doing" then out came the tears. (not that I'm not normal), but I would love to be well and working and spending lots of time with my children and grandchildren without getting this terrible fatigue. I've stopped counting how many times I've been diagnosed with new mets, but most times I am silently distraught for the first couple of days of being told then have a day of tears. It's just how I except the news. I have met so many beautiful people since being originally diagnosed, it will be 12 years September. My second granddaughter was born September 26th and I was diagnosed the following day. I call her my little guardian angel. I wish you all the very best, cheers from Annette

Hello Maxine6755, Glad you have made a blog post and thank you for telling your story.

There is an online group for Women Living with Advanced Breast cancer that you might be interested in.You can find it here: www.bcna.org.au/group/4218

You could also use the site's search function to find others posting about advanced or secondary breast cancer (see above the main navigation bar where it says "start your search here" -- when the results page comes up, if you look at the right side of the page, you'll see if each result is a blog post, page, group, etc.).

Hope that helps -- if you need a hand with finding your way around let me know.

~ Jess

I'm a little confused with how to reply to you as there was no option of me replying to you from your words. Hopefully you'll be able to read this. I've only been on this BCNA site for a very short time so still learning on how to use it. Yes it does come as an awful shock to get a secondary diagnosis but from experience I've found the best thing is to go with the flow and deal with you feelings as they arise. I tried to push my meltdown, down for a week and it jumped up and bit me on the bum at the worse time. There is so much help and support out there, you don't have to deal with it on your own. I've had some people say to me "so how long do you have" and after I get over the shock that they actually did say this, I really want to say "well you just watch out for that bus" that could get any one of us at any time. You do have to toughen up, so to speak. I used to be a mouse until I had my second diagnosis, six years ago in August. Not any more. Maxine, you're not on your own and I have found this site fantastic. Theres so many people that have a kind word to offer, you take care and I'm sending you big warm hugs of support. Cheers from Annette

I'm a little confused with how to reply to you as there was no option of me replying to you from your words. Hopefully you'll be able to read this. I've only been on this BCNA site for a very short time so still learning on how to use it. Yes it does come as an awful shock to get a secondary diagnosis but from experience I've found the best thing is to go with the flow and deal with you feelings as they arise. I tried to push my meltdown, down for a week and it jumped up and bit me on the bum at the worse time. There is so much help and support out there, you don't have to deal with it on your own. I've had some people say to me "so how long do you have" and after I get over the shock that they actually did say this, I really want to say "well you just watch out for that bus" that could get any one of us at any time. You do have to toughen up, so to speak. I used to be a mouse until I had my second diagnosis, six years ago in August. Not any more. Maxine, you're not on your own and I have found this site fantastic. Theres so many people that have a kind word to offer, you take care and I'm sending you big warm hugs of support. Cheers from Annette

Annette, sorry I didn't answer your question about which chemo I'm on at present.  I began with ER - Epirubicin and Cyclophosphamide which I had originally back in 1993.  This time in 2010  ER made me quite ill so it was stopped.  Next was Abraxane which I had for a while but also made me ill - Navelbine followed - same result. Referred to another Onc who prescribed Carboplatin - finally something that was really good, virtually no side-effects, lots of motivation and energy.  After 2 years on this it stopped working so I had it in combination with Gemzar - not good.  Now am on CMF, an old combination around for about 20 years but is making a bit of a comeback and have now had 4 cycles - yet to find out if it's working.

We're all different and some women have little or no side-effects but the good thing is that there are lots of chemo drugs out there and more coming, so if one doesn't suit just keeping trying.

Re the dark thoughts that we all have - for me it took time to be able push these thoughts away and my solution 3 years ago was to buy a laptop and I began writing anything: not a novel, a bit late in my life for that but my life story - and many other topics - I have 3 blogs - I find writing a wonderful distraction and keeps those thoughts at bay.  Not everyone wants to do that but it helped me and kept my mind focused and absorbed on other things besides my diagnosis. 

Maggie xx

I'm also travelling along with nets in my sternum. So far so good... And 21/2 years on, I absolutely love hearing the stories of hope that th is group shares. Good luck. I use qigong, classical homeopathy and acupuncture. As well as femara. Go for it.

I'm also travelling along with nets in my sternum. So far so good... And 21/2 years on, I absolutely love hearing the stories of hope that th is group shares. Good luck. I use qigong, classical homeopathy and acupuncture. As well as femara. Go for it.

Re the mets in my spine: L3 was just about ready to collapse due to the tumour, necessitating the urgency for surgery.  L2, L3, L4 were fused together with a bar and screws and bone graft to shore up the almost collapsed L3.  The radiotherapy was amazing for the pain and now 10 years later there has been no further spread in my bones.  I have little discomfort in the area but if some activity causes a little discomfort some heat helps and for this I have an electric pad that I use, I rarely need painkillers.

My biggest concern now is my liver but chemo so far is keeping it under control.  I didn't mention the wonderful support group I am involved in where our group meets once a week via teleconferencing or in the room for 1 1/4 hours.  Women throughout Queensland with metastatic breast cancer are eligible to join.  This is so helpful being able share our knowledge and experiences in this group as well as the camaraderie we share and has also been a huge part of my/our coping skills.

Love and hugs,

Maggie

Hello, Well done you. I have been on this journey of secondary BC for five years, but was originally diagnosed in 2002 with a very small cancer and had five good years after chemo, radiation, and two ops. So all up going on for 12 years. I am just beside myself with every new diagnosis and my mind goes to lots of dark places. Have melt downs when least expect but most of the time I'm on top of it, with help from family and friends. My latest diagnosis has showed that I have another bone lesion, I have lesions in my spine, shoulder, hip, and ribs also in my lungs, latest one is in my arm, a real nuisance as I love to knit. The afinitor I was taking has stopped working. I will be having five doses of radiation and will start chemo next week. I will be taking Xeloda. What chemo are you on at the moment? I wish you all the best and think you are fantastic. Cheers from Annette

thanks for the comments makes me feel that I'm not alone and it gives me the strength to continue when some of you ladies are still hanging in there hope you are all well and we can all deal with this.