Life does not end with a stage IV diagnosis (really!)
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Caryn,
Congrats on NED and new baby on the way.
I have finally moved to Cape Cod year round Still very much settling in. Had a house fully furnished and stocked and combining with the condo I just sold - a challenge Lots of items lined up for the thrift shop and packed away for when my DD moves (she is 19 so hmm not for a bit I think)
I am still working 10 hours a week, and will continue for about 6 months. It will be interesting to see how the winter goes here, will be creating a new life for myself. My friends are all about an hour or a bit more away, so getting together will just take some planning
I leave for Costa del Sol on Sept 4th for a week with my daughter. Anxious but excited. I have told my kids I am taking a trip with each of them, so daughter is first, son who is living in Boston will be after the first of the year Wanted the time alone with both of them.
And better yet - my recent scan was NED Hoping for another long run on this treatment (xeloda) Just had 3.5 years on tykerb and Herceptin So we will see.
Best to all
Nel
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Hello everyone! I haven't been on the boards as much lately, but I just popped over to read everyone's good news. Wow! NED and grand-babies and parties and vacations galore! So great to hear about all of the good things in everyone's life.
I just returned from a trip to Mackinac Island with my mom. She turns 70 later this year and we have never done a mother/daughter vacation, so I asked her to go with me and we had a great time. I've lived several hundred miles away from her for almost 20 years now, so we don't get to spend as much time together as we would like, but since my diagnosis we are trying to get together more often.
I'm so thankful that I am still able to work full time. It is a challenge, but gives me a sense of normality. I even got a small promotion a few months ago!
Life is very good.
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You just have to pop in Caryn and then the thread gets going again! I too recall you being concerned about this last PET, and I'm so glad to hear your good news. Relief! And, a new grand baby, how exciting! Such a cute story about your granddaughter's teacher. Kindergarten already? That's awesome, too, and you're still here!
So glad to hear of NED reports from others and wonderful vacations. LIta, yeah to fire & wine! Glad that day was a good one and will be thinking of you next week.
I am thankful that I'm still able to work which does give me a sense of normalcy and opportunities for travel! I'll be going to Vegas for a conference in October. DD, who isn't yet 21, is going along for a mother/daughter trip of sorts. We'll see a show and she'll enjoy the hotel's pool, I'm sure. Also, just found out that I'll be working a conference in Kyoto, Japan next April. I didn't think the powers that be at work would ever let me leave North America, so I'm very excited!
And so it goes... life IS good.
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Bj...good for you! I have always wanted to go to Japan. Actually studied the language for a while i graduate school.
Another shot of my finished patio. Will be spending as much time as I can out here.
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LIta, that patio looks fabulous and very inviting. Enjoy! I never really had Japan on my list of places to go, but I'll sure take it, and I do have time to brush up on some Japanese. Domo arigato and Konnichiwa are about all I know except I do still remember how to count 1-10 which a Japanese-American friend taught me and my sister in elementary school. Hope you're having a good night.
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Lita - love the patio looks so inviting and peaceful
Bjsmiller - Japan how very exciting Good for you Yes works keeps things as normal as possible for me on this crazy roller coaster
Nel
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Shutterbug. After my stage 4 dx my DD and I took 3 vacations together which was great so I know how you feel. My DH DD and SIL just spent an amazing week together in Israel. So special
BJ. Your trip sounds exciting to me
Lita. We're all coming for a glass of wine with you on your gorgeous patio!
Bab
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EXBRNXGRL: Thank you for this thread... I came here with your exact words in my heart and head:
"So often, those newly dx'ed stage IV, think they've been handed an immediate death sentence and panic or plunge into some very dark places."
I was dx with Breast cancer this summer, now they are finding my breast cancer in my hip, ribs, possible lumbar area and neck. Still going through all the testing to see how we are going to change up my current breast cancer treatment to accommodate these new findings.
I'm panicked because if you google "Stage IV Breast Cancer Survival Rage" cancer.org states only 22% make if 5 years. Is that correct????
I could use all the encouragement I can get.. I want to see my kids marry and i want to be a grandma! Thanks for your thoughts,
Tina
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Tina Marie,
Welcome and thank you for the compliment. Yes, as an overall statistic, that's about right. Sadly, looking at stage IV patients as a whole, is pretty grim, but... None of us is a statistic and the stats we have may be several years behind newer tx that have come out. Though there is no way to predict who will do well, there is hope. In the six years since my dx, I have walked my younger daughter to the chuppah and stood by my older daughter through a divorce. I have also seen two grandchildren born and am expecting a third in March (It's a girl!). At dx, I had no idea how long I would live or what shape I'd be in, but I decided I was going to be happy, whether I lived for ten days or ten years. Being that,despite the good luck so far, I still don't know how much time I have left. I will most likely die from bc, but I plan on living fully for as long as I can. My attitude has not cured my bc, nor changed it's course, but it's made my life as good as it can be under the circumstances.
Baby Ellie Lynn, expected about March 3,2018 😍
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Tina Marie,
So sorry to find you here among the Stage IV gals. Yes, statistics are just statistics. Our bodies are NOT median, mode or mean averages. We will go when we go.
Sadly, I thought I would have more time...at least another year. I was Dx'd April 2016 with bone and organ mets. Then - happy, happy, joy, joy - BRAIN METS crashed my little cancer party this summer. The radiologist stopped counting after she reached 20+ brain tumors. Two of the largest one are 4 cm. I've had WHOLE BRAIN RADS, but still have headaches, so I have to stay on low-dose Decadron steroids (so, no decent sleep for me, alas). I also have leptomeningeal involvement, that's in the fluid surrounding the brain, and those floating, malignant cells are difficult to treat. Eventually, these rogue floaters will attach themselves to the grey matter and set up more colonies of metastases. I'm not looking forward to my next brain MRI.
Right now, I'm just trying to live day to day and appreciate what function I still have left. They have put me on Namenda/Memantine, an Alzheimer's drug, to minimize some of the neurological deficits. I have numbness in my lower right side, and I don't remember any of my dreams, but I can still walk and talk......for now, anyway.
My life is in God's hands now.
I want to go to Mendocino on the Calif coast in 2 wks, but with all the wild fires burning out of control and devastation (half of Santa Rosa has burned to the ground...hundreds of houses gone, wineries gone, and even the HILTON hotel in Santa Rosa burned to the ground), I don't know if we'll be able to go.
Take care and try to live each day to the fullest.
L
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tina_marie ~ Anyone diagnosed with mbc 5 years ago, did not have the advantage of some newer drugs and tx protocols. Plus, bone mets only actually has a much better prognosis. Here is something more recent that shows progress over the older stats you found. Keep in mind that more new drugs are coming along all the time, such as the new CDK4/6 inhibitors (e.g. Ibrance, etc.). Many women are having very long runs on them, and that's not yet accounted for in this newer summary and projection.
https://www.cancer.gov/news-events/press-releases/...
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Amen, dlb, and there's Abemaciclib, which just received FDA approval. It has a large price tag...$10,000+ per month, but there's probably some program a person can get on to reduce the price. Abemaciclib is one of the few newer Tx that they say actually crosses the "blood brain barrier," so there's still hope for brain mets gals.
L
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Wow, good to hear about Abemaciclib. Having a third choice for this class of drugs is great news.
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Thank you Ladies. I think ill be hanging around. I need all the support and encouragement I can get. I'm just very numb right now
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Hi Ladies, thank you so much for your encouraging words.. I think I'll hang around here and stay updated with ideas and treatments. I'll keep everyone posted.. Right now my scans say I have cancer in the bones... Friday I got to find out if it made it to any of my other organs. Hoping (AND PRAYING) it has not.
I'll keep you posted.
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Welcome Tina Marie, to lots of friendship and great info and kudos here : ). I read so many posts, but am not usually "hands free" to comment (i.e. doing an alternative protocol). I'm 1-year post-dx Stage IV, mets to bones, lymph, lungs blah blah, and feel great, thanks to juicing and some "alternative" protocols which help mitigate SE/side effects of Letrozole (love it) and Zometa (to prevent the bone shattering caused by Letrozole). After reading so many posts here, I'm planning on 5 good years plus 5 more... We are planning some trips and playtime. My health IS my full time job! We dance more (in the kitchen), and walk daily. I just took DH to an Independent Living place that I like (for 5 years in the future!!), he loved it, so we have "The Best Is Yet To Come" to look forward to.
Lita, I love your posts, even though I don't usually get to respond. Your humor is fabulous. You are truly a Shining Star here, for me!
Is Shetland Pony still with us? dlb and exbrngirl, I so appreciate your involvement and sharing here. There are so many other inspiring Sisters (and Brothers) whose journeys inspire and encourage me. It is so great that we get to share with each other.
Love you all, Diane
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Tina Marie -Welcome, though I'm sorry you have had to find this forum. I'll be two years from diagnosis in December (bones, lungs, and liver), but I know I've had this for more than two years due to the symptoms I was having. When I found out I had recurrence, I didn't know what to think and immediately went to worst case scenario and wondered if I would ever feel well again. Fast forward to today and I work full time, am totally active with my family, exercise every day, travel as much as possible, teach yoga once a week, and live fully each day. I'm not NED (yet!), but I'm stable, and I feel really good. Exercise has truly been one of the main keys to my positive state of mind, and if you want to join us over on the Stage V Fitness thread, we all try to motivate each other to keep moving. I'm inspired every day by the people on this thread and on that one as well. We are all in this together so don't hesitate to reach out.
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Yes, GraceDD, ShetlandPony is still here, three years since mets diagnosis and doing well. Welcome, tina marie. Breathe. You are here, you are ok. Deanna, thank you so much for linking the article about recent NCI work on mbc statistics.
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Tina Marie
Welcome 4 years post MBC dx Doing well Had a long run, 3.5 years of NED on tykerb/Herceptin Progression this spring, now xeloda/Herceptin Hoping for another long run. Just recently went to Spain with my daughter (19) we had a great time - tho the walking with neuropathy gets a bit tricky Sneakers or flats with dresses - no high heels!!! Planning a trip with my son (24) for after the first of the year
I just pace my life differently than I used to
Hope for gentle treatments and a long run for all of us
Nel
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Welcome, Tina! I am nearing 2.5 years since diagnosis with bone mets and doing well. I too found this thread to be so helpful, encouraging and comforting. Will be going to Vegas on a business trip next week and taking my daughter along. I'm planning to stick around for a long while, but in the meantime, I will enjoy as much life as I can. MBC may take me one day, but I do know that today is not that day. Once you get all the tests done and have a good plan in place you'll feel better and more hopeful. We've all been where you are now, but it does get better. Everything crossed and hoping for good scan results for you. Do keep us posted.
Caren, Deanna and Lita, and all of you in California, my heart goes out to you! The fires are just so devastasting and heartbreaking! I heard a hotel had burned, but didn't know which one, so many homes and wineries; just awful. Colorado has sent our huge tanker which I hope will be of great help.
Yes, good news about Abemaciclib! I had just read about this the other day at work.
Hugs to you all.
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All you ladies are Wonderful! I want to fight... and you are all inspiration to do so. I have so many thoughts in my head that's constantly "how many years do i have? I wanted 25 more! I'll be 50 in November... so now I'm focusing on making what I have count. This has been a lot to take in.
Tomorrow I go for my PET Scan, Monday MRI of Brain, then Tuesday I meet with the MO to see what the new game plan is. I had chemo infusion #2 yesterday and i am encourage by how well i'm handling the side effects. I'm hoping that this mean's i'm healthy enough to fight what ever I got coming!
Thank you again for all your encouraging words and cancern. I'll keep you all posted on my tests.
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BJ...the hotel that burned was the Hilton, in Downtown Santa Rosa. DH, DD and I stayed there years ago.
Kaiser Permanente Hospital in Santa Rosa also burned to the ground. They evacuated all the patients on Tuesday.
The air quality is SO bad right now...worse than the most polluted cities in China and India, so they say.
Thirty-three dead so far, and they say the number will rise.
L
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Lita, I have been following the news of the horrific wildfires in California. It is such a tragic situation. We never know what is coming next in life.
I have had some happy things as well as some sad things going on in my life lately. First the sad one. My son has filed for divorce. I will not go into details, but the issues between him and his wife cannot be resolved. My grandchildren, who are 11 and 12 1/2 are understandably upset. They are asking important questions and are voicing their concerns. Both parents are trying to put the children first, so I hope they will come through this with as few scars as possible.
Now the good news. My granddaughter turned 3 years old a few weeks ago. I remember when she was an infant, and I had a difficult time holding her without pain. I was out of breath just carrying her around the house. Now I can play tag and soccer with her and just have fun. Here is a picture from her birthday.
Enjoy the rest of your weekend.
Hugs and prayers to everyone from, Lynne
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Lynn. She's adorable!!!!! So glad you get to enjoy her. And I'm sorry about your sons divorcee. Hopefullly they stay mature enough to keep the kids first!
Babs
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Tina Marie, your story could be my story. Diagnosed May 2017 Stage III. "Significant nodule involvement" report said . Though you had no nodes I had 21 positive out of 23. Oncologist ready to place port for chemo but tumor board said spots on lumbar spine and ribs need to be investigated. Bone biopsy positive on L1. Suddenly I'm Stage IV and treatment is completely different. My kids are 11, 14, 15. Some days are good others not so much. Physically I'm feeling good but it's tough mentally. I come here often for inspiration and support. Mine was also a Grade 3 tumor. Previous mammo was fine this years showed enlarged lymph nodes. I addressed it immediately but it had spread like wildfire. It was my fourth mammo, one a year since I turned 40. Genetic testing done, will find out the results at next onc visit. I have an amazing family and I love my oncologist. I've always been optimistic, now it just takes a little more convincing.
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Lynne, that is very sad to hear of your son's divorce. I always pray my children will make it to 30 years and beyond, happily like my DH and I. Although in the early days we definitely had some major ups and downs......Hopefully they can create a smooth transition for the kids and luckily they have grandma too. You little granddaughter is a little doll!
Yes grief, just breathe and the one day at a time. Luckily there is no organ involvement so you could go on for years and years. Don't let the stress suck you under.....Lots of treatments out there and new ones everyday!
Just had my middle daughters wedding this weekend. it was a glorious event, truly perfect!
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Lynne, that is very sad to hear of your son's divorce. I always pray my children will make it to 30 years and beyond, happily like my DH and I. Although in the early days we definitely had some major ups and downs......Hopefully they can create a smooth transition for the kids and luckily they have grandma too. You little granddaughter is a little doll!
Yes grief, just breathe and the one day at a time. Luckily there is no organ involvement so you could go on for years and years. Don't let the stress suck you under.....Lots of treatments out there and new ones everyday!
Just had my middle daughters wedding this weekend. it was a glorious event, truly perfect!
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Artist. So beautiful. How wonderful!!!! I'm beaming just looking at the picture and knowing how precious this moment was to you!
Babs
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Fabulous dress!
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JUst beautiful
I hope every day I am here for my kid's wedding (if they choose to get married - who knows!!!) I want them to hurry and I want them to put it off , neither is ready 19 and 24 Keep my thoughts to myself!
Nel
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