How long have you been Stage IV?
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Bump.
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Just curious. I noticed you have mets to brain. Did you have radiation for it? I was recently diagnosed with 8 lesions to the brain after a great response to taxotere, perjeta, & herceptin. I'm now on tdm1 bc of the brain mets
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Anne, how are you doing on Taxol right now? I had five months on it back in spring of 2014, but Xeloda has worked well for me at a lower dose than the one I started with. Hoping the treatment keeps you stable and is not toobad to live with.
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Bump...
Would like to hear from more gals that haven't posted here. I know there are more. I guess the thread just got buried and no responses for 6 months.
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I am coming up on my 1 year Cancerversary on May 1st!
Julie
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Congrats, Julie!
I am 1 year and 18 days into my Stage IV nightmare with extensive bone mets. On daily Lethrozole only with Zometa monthly. Currently stable with minimal symptoms (mild rib pains or discomfort come and go, not enough to take any medication), but apparently pretty far away from being NED (scans said no changes or minimal improvement). However, my onc for some reason has been satisfied.
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Hi Goldie. 11 years with advanced disease. Almost 21 altogether, originally stage 3. Best wishes to you!
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Leggo wow, 11 years? What's your secret?
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No secret, just a lot of research, being my own guinea pig and a lot of good luck, I think. Happens more than this board would indicate. I know two others personally who have 9 and 13 years. No reason it can't be you too! Good luck....I know how "good luck" sounds sarcastic, but I really mean it. It can be you too!
Suersis, I got that new years phone call too (both times). It sucks. Now I can almost set my watch to what's going to happen. All the shitty news comes down in December.
Oops, sorry, seems I already responded when the thread started....my bad.
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Seven years.
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Congrats KSkier!
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4 years 5 months.
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Way too long.
Started with advanced breast cancer at age 34, now nearly 60.
Way too long.
The worst suffering is outliving so many loved ones. It's a steep price to pay.
But better to have loved and lost than never to have loved at all.
Blessings, Stephanie
P.S. lovely to get more jigsaw puzzle pieces to better "see" other forum 8 participants. Thanks for bumping this topic, Goldie.
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Holy cow Stephanie! What was your first metastatic site? Just my own wishful thinking that I might get there too, if our sites were the same initially. Mine was to the sternum and ribs. Lots more since, but it all started there.
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I feel like a newbie compared to some of your gals!
2 years and 4 months for me.
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I think we're all going to be newbs compared to Stephanie. My math sucks, but almost 26 years!!! Still wrapping my head around it.
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Hi Leggo,
Chest wall with muscle, skin & nerve involvement at first.
Everything about my breast cancer course is atypical and I really don't think anyone wants to start so young and spend so many years in treatment. I mostly don't tell my story, because I wouldn't wish it on anyone and wouldn't prescribe my treatment antics either. Many are outmoded and all are atypical.
Most of us are just wishing we'd never got here in the first place.
blessings, Stephanie
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Thanks Goldie for bumping this. I like to keep up with everyone and this helps!
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Hi everyone!
Another newbie here. Was dx stage IV from the get go in March 2015 with mets to liver and lungs. Chemo did shrink the primary tumor and the mets substantually
and I am currently stable on Herceptin and Perjeta. Very grateful to hear from all you long time survivors
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I am pretty new to this. Diagnosed a little over 4 months ago with mets to bone and liver. Stage iv right out of the gate. Reading this thread gives me such a great sense of hope and encouragement. ITs amazing to see people 5+ years and still going strong
Thank you
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Guess I am a newbie at this too, even though it feels like it's been forever already! Stage IV from the start in August 2014, so "only" 19 months. For encouragement sake I will say I started with diffuse bone mets all over my spine and pelvis and as of last PET in February, rad report said complete metabolic response. Never thought at dx I would ever feel this good again.
My admiration goes to those of you who have been living with this for many years. I'm sure it has been tough, but still beats the alternative!
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5 years, 10 months, 15 days since that first met.
10 yrs, 9 months and some odd number of days since original diagnosis.
*susan*
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Hello dear sisters, So encouraging!
I am approaching 4 year anniversary since diagnosis with Mets "Stage IV." I am feeling strong, not able to work full time but otherwise, very active.
My first diagnosis was stage 1, 7.5 years ago.
I have been through hormones, chemo, anti-bodies, and more. Currently on a great clinical trial at Georgetown with Ibrance or palbociclib and 5FU. It is not coming up on Clinicaltrials.org so let me know if interested. It has been a miracle for me.
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I've been stage IV for 4 1/2 years now. Started out with 5 spots to my spine, now all of those are gone, but a new one popped up 6 months ago. Doing Xgeva and Xeloda and disease is arrested (not NED, but not growing). I don't have any problems with the cancer, just with a slipped disk which is causing sciatica. It's hell to get old, but then it would be hell not to get old.
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I don't want to start an argument, but for the sake of argument, I believe there are disease and treatment fates worse than death because I've lived through several.
I don't want to sound ungrateful, because I am grateful for my life, all day everyday.
But as someone who's achieved the impossible miracle of a very long life with cancer and has decided which treatment paths to pursue, I believe it's imperative that each of us decide at each moment along the way what we will and won't do to prolong life.
Many treatments are more brutal than the disease and have little or no hope of leaving us with an acceptable quality of life.
There are great costs to survival and I often wonder whether most will be able to pay the high price.
Financial costs are the least of it. Loss of independence, mobility, physical function, employment, relationships, security, homes, hobbies and ability to physically care for others and oneself are only a few.
Unless we acknowledge and mourn these losses, we've little hope of going forward with dignity. Looking back with rose colored glasses won't lead to longevity.
Nor will denying the costs of survival.
It's impossible to know until the moment of choosing, just what each of us will do to stay alive.
And it seems possible that at some point along the way, dying is the best choice for loving care of our ailing, failing bodies.
Most spiritual and religious traditions show us that death is a part of life and though mourned by the survivors, may be a source of liberation and transcendence for the dying.
Death can be a great teacher for living life.
From a friend on hospice, Stephanie
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So well said Stephanie, thank you.
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thanks so much Stephanie.
I was diagnosed stage 2 June 2015 and stage R November 2015. I was obviously stage 4 out of the gate.
Mary Anne
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Diagnosed Stage IV right off the bat October, 2005.
10 years and 5 months for me.
Kessala
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4 months
Diagnosed with lung mets in Nov 2015, 1.5 years after original Stage 2 diagnosis. Everyone (including doctors) told me I would be fine and had nothing to worry about. And yet, here I am.
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12 years for me and still NED. I was diagnosed stage 4 with bone mets right from the start
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