Life does not end with a stage IV diagnosis (really!)
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thank you Mara and lita! It means so much to get some advice and insight from fellow women going through this crap! One of my biggest fears is I won't respond well to the drugs. I have had little success from Herceptin and perjeta along with FEC. I guess I won't know until I try them. Taking one day at a time. I met a wonderful group of ladies on here from round one but they are all at recovery stages life back to semi normal. Im happy for them but feel a bit like the odd ball. They are still very supportive and I don't know what I would do with out them but feel I need to talk to some women who have been dealing with the reality of a stage 4 dx. So thank you for your quickness responses.
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Twirp, I am still coming to terms and getting used to the idea of chemo for life so to speak. My regimen starts Nov 15. Will be getting Herceptin/Perjeta/and a couple of rounds of Taxol. In Ontario, you cannot get Herceptin or Perjeta without doing a chemo first. I don't actually have cancer from neck down, we will drop the Taxol soon after. I am adjusting big time but still taking one step at a time, praying brain surgery/radiation that I had will give me peace for a while.
Stage IV is not easy for everyone, but depending on what you are dealing with ie where mets are, what your overall health is like and what you are put on, you can also hope for a somewhat normal life. There is no reason not too. It is a tough road for a lot of people, take it slow. I also highly recommend guided meditation you can listen to in bed if you start staying awake at night. It is nice to get a break from cancer too. I like the honest guys on youtube. Go see a movie you like with people.
Check out the different threads here for Stage IV as well. There are good ones, a fitness one if you are active that is great, this one is great as well. It may be tough to be on an earlier stage thread at first if all the people are getting back to normal. Our road is lifetime of treatment but it does not have to mean less quality of life. I hope yours is a gentle road, but if it is not, we are here and understand you. I am still adjusting myself as I said, once back on treatment, I will probably be leaning on people as I did recovering from craniotomy and brain rads. Good luck.
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Mara, again thank you so very much!! I wish you all the luck in the world with your regimen on November 15th. I will certainly be reading this thread and will check out some others. I have stayed away from the stage four threads because I was praying I wouldn't need them. I guess I'm safe to get on. I'm so glad I have people to reach out to even though it sucks for everyone here:( I do appreciate you taking time to make a stranger feel better. You have given me some hope. Best wishes!!
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we all live in a yellow submarine...
Welcome, Twirp. And I'm sorry you have to join us.
I've been living with stage IV for over 4 years. We've had our ups and downs. Thankfully I'm surrounded by a large community of people, both here and in person in my life who support me and help me take care of myself. I was rewatching the video of my living memorial from February earlier today and my BFF said that the most important thing is to let people contribute to you. And to tell them what you want. It takes some practice, and my life is infinitely better because I'm now able to do that.
And keep breathing. Consider keeping a diary so you can see your progress. I also discovered what and who triggered anxiety in my life by keeping the diary. Nothing elaborate...just a few sentences at the end of the day.
Much love...and keep in touch as much as you like. We're here
Patti
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patti,
A million thank yous! 4 years😊😊😊 I think I will start a journal. The emotional roller coaster I feel is just crazy. I hope and pray that once I get some kind of plan in place it will bring me and my family some peace. I think the waiting and thinking and worrying is one of the worst parts of this. I am finding some comfort since getting input on here. Trying to just take one day at a time. I do appreciate it! Good luck to you!!
Kimi
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Twirp, yes, especially so soon after a stage iv diagnosis, it seems like some of the hardest times and most definitely an emotional roller coaster.
I deal with er+ her2- so my experience is somewhat different than yours. I started out stage iv from the start. I did have chemo, a lumpectomy- I had no node involvement- and radiation. Some stage iv women do have the tumor removed. I have been on an antiestrogen medicine for 5+ years and remain stable, get scans twice a year.
I do not know if you saw my post to lissalou on the last page. It was before you posted. I wrote of the many different ways I learned to cope. I am pasting the advice here for you. Take baby steps if that is all you can do. Sometimes all you can do is take it an hour at a time. You do not have to be strong. Best wishes to you as you sort this out
Advice:
.......sometimes it is a switch in thinking that helps get us on a better track. I have learned to look at it as living with cancer, not dying from it. Like exbrnxgrl, I am 5+ years dealing with stage iv. The first year and a half was rough. I just kept making plans to do things I really wanted to do. Sometimes I would plan for the next week or month, sometimes for the following year. And then learn to live in the moment.
My suggestion is do something completely out of your comfort zone. You need to get your mind off bc, so doing something new means you have to use your thoughts to learn new things. This is sometimes why people zipline or parasail or skydive.
You have had the shit scared out of you by the stage iv/metastatic bc diagnosis, now you need to do something equally shocking to your system but in a positive way. Then, after you do that one thing, think of the next thing you are going to do. Some people will train for a marathon, climb a mountain or take a camping trip into the wild outdoors. I know exbrnxgrl went to Sydney Australia and climbed the huge Harbor Bridge.
I have also done more activities closer to home, visiting places of interest within an hour or two from where i live. It is a steady diet of trying new things. Sometimes I might even go into a new grocery store and check out new foods I never ate and buy some new tasty thing to try. Or go to a new or different restaurant.
Sometimes retail therapy can help. A new coat or piece of jewelry or can lift the mood.
I also love listening to some great tunes on my ipod. Getting out and taking a walk, even if it is 15 minutes every other day. I like listening to my ipod when I walk. A walk can help clear you head.
Journalling also helps. Every morning, write three pages of whatever you are feeling. It helps to sort out your feelings and sometimes you get in touch with feelings you did not recognize were there.
Consider entertainment, too. If you can get to a show with a good stand up comic, do it. I saw Jerry Seinfeld and literally laughed for over an hour straight at his show, as well as seeing several other comics. A rock concert, a good movie, a super good book, binge watching some fabulous shows on Netfix or even a terrific addicting game on the ipad have helped me lift my thoughts away from bc.
And ask yourself what is some thing or some things you really want to do. Then make plans to do that. Add more fun to your life. You are allowed to do that.
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Twirp - Allow me to welcome you as well. I'm very sorry you find yourself here, but you couldn't find a better group of friends to commiserate with! I don't think I have much to add to the great advice you have already been given, but I would suggest you try to focus on today. No one knows what might happen tomorrow, so make sure to stay present and enjoy today. The first few months are really really hard as you adjust to this new reality, but things will get better as you find a treatment plan and see it working.
Have you had a biopsy to make sure the new cancer is also HER2+? If it is, you will have lots of options. I have been stable on Herceptin & Perjeta for 2 years now, with a great quality of life and minimal side effects. I still work, exercise, garden, etc. I plan on many many more!
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Twirp26 Don't loose hope there is so much of it out there. I was diagnosed with extensive mets in 2015 May. It's been a year and a half and I feel healthy now than then. Life goes on I know how your are feeling took me about six months to stop crying and feeling sorry for myself and what I had lost. I saw recently Chelsea Handler interview Shannon Doherty who is also stage four. She said cancer tears you down but then builds you up. I couldn't have said it better I have found it to be exactly that. A second chance at life where you see things clearer, what's important and what's not. Those granite countertops aren't so important anymore the smiles on our families faces are. I have three children so I know how that fear is , you are stronger than you know.
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gosh, I really can't thank you all enough! I'm so glad I pulled the covers down off my head and got on here. The info is so fresh and new I can only hope a pray to be at a place it seems you all are. You are all so courageous and hopeful. I will get there. I feel a little better today than yesterday so that's a start!! Good luck to all of you!
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twirp,
I'm the op on this thread so I thought I should chime in. The beginning is tough, as you may be dealing with more tests, treatments and appointments than you ever had in your life. Eventually, you will, hopefully, make a mind shift so you can live with bc (yes, most of us will die from it, but not today!). There will be some concessions and adjustments to be made, depending on symptoms and treatments, but many of us re-gain more normalcy than we imagined we would. However we can make some wonderful memories and plan into the futurewith family and friends. I always urge people not to put one foot in the grave before they have to.
I just passed the five year mark. I work full time (I adore my job) and have become a grandmother twice over since my dx. Can you imagine how sad it would have been to miss all this by condemning myself to a long slow death march? I'm not in denial about my probable fate, but I refuse to resign myself to it until I have to.
Take good care of yourself.
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I just received my stage 4 diagnosis last night I had been 8 years cancer free but a recent bone scan revealed hot spots in my ribs back and back of skull. I am devastated I haven't seen oncology yet and am scared about my treatments. I had rib pain as well. I don't know how yo over the shock and de
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HI Delvzy,
re. getting over the shock of MBC diagnosis - many report shock, trauma and disbelief for months and years. Seldom do any recover equilibrium sooner. I encourage you to engage any practices that you already use for unwanted news that completely upends your life.
Saw your entry at Radical Remission and encourage you to write more about the book and whether you're interested in any of the key factors of healing that interest or draw you. Only 3 are about the usual approaches and many of us are surprised that exercise wasn't reported by her study participants...their choice though.
Delvzy, I'm glad you made it to the MBC forum, though none of us plan to be here, it's good to have companions.
Be sure to check out the bone mets community - they're a wonderful, supportive and knowledgable women.
Sending a warm and welcoming hug, Stephanie
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twirp and Delzy,
Glad you found the thread. As others have said the initial shock and following weeks are the worst. I am 3+ years with MBC and 3 of them NED. I continue to work, see friends, travel, launch my young adult children - all the good stuff. Still have a good quality of life I do pace myself a bit differently these days. I used to be able to do 6 things at once - now maybe 2 and I don't plan activities to book up my whole weekend. You will get a treatment plan in place and day by day it will get a bit better.
I think all of us have down days-the trick for me is to not stay there for long. Time is too precious.
Be well
Nel
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Welcome, delvzy. Sorry you have to be here, but we are all here to support you and help you get thru this. I was Dx'd w/St IV right from the gate in April, and I'm STILL in shock and quite angry, as you can imagine.
Just got back from the 13th Annual Bay Area Cancer Connections conference. I am TIRED! It was a long day, with the commute across the bridge, finding parking, schlepping my bags, etc., but it was well worth attending. I will definitely go again next year. One of the seminars I attended was on cancer trials for HERS2+ and ER+. I have to consolidate my notes, then I'll post some of the highlights. A little too pooped right now. (Still battling SEs from Zometa and diarrhea...Imodium took care of that for several hours, but now that I'm home, here we go again
.)Going to get a snack, take my Xeloda and go to bed early.
Lita
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welcome, Delvzy. This is a wonderful group of women who can hear anything, so do feel free to vent, or rage, or whatever works for you.
Love,
Patti
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Miles started on solid foods about 10 days ago. Do you think he likes it?
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exbrnxgrl, how adorable and I can't even see that face!! What a way to be uplifted! Love babies!!
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Thank you! I am fortunate to have grandchildren and since babies put a smile on most people faces, I'm happy to share. Miles is a very smiley, animated little guy so he makes a great photo subject
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I went down to Monterey last Friday and Saturday and had a lovely time seeing a few friends. My BFF drove down with me and hung out with some of her friends. We drove back together Sunday and then I went to a 49ers/ Saints NFL game at our new stadium in San Jose. The 49ers lost, badly, and it was so fun. Went with a work friend who has season tickets. Several very long walks to and from the stadium to the train and we just went slowly and it was fine. The seats were fine. The weather was perfect. I came home happy, Had a bite to eat and went to bed at 6:30. Woke up this morning at 8:30. And no worse for wear. Now the kitties want my attention. I am getting used to this new pace called "slow", and it works quite well.
Love,
Patti
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Don't hit me over the head...Levi'sStadium is in Santa Clara. Glad you had a good time and Monterrey is beautiful
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LisaLou and Twirp, I'm sorry your path has led you to needing our support threat. But this is a hopeful thread, and realistic at the same time. It's okay to come here to vent and celebrate. There is life after diagnosis. I know to others on this thread it will sound repetitive, but I want to share my word with you both. It's "Fortitude". Which means "courage in the face of adversity". I cling to that word, and it gives me the gumption to look at adversity (test anxiety, treatment side effects, tactless family, etc) with determination to live a life of meaning. I'd encourage you to take that word for yourself, or any word that captures your motivation. God bless you each as you deliberately travel this path.
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Fortitude...I'm adopting that word today. (Had a nasty weekend of Xometa/Zeloda induced explosive diarrhea - double yuck!
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exbrnxgr..you are correct. I say San Jose as most people outside the SF Bay Area have no idea where Santa Clara is. I also say I'm from Detroit as most people have no idea where Waterford, MI is. And Miles is adorable...one of my young friends has a new baby and we get together every few weeks for baby therapy
Lita, stay hydrated.....
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Sattipearl,
While I was envious of your Monterrey trip, my younger dd reminded me that I will have an overnight in Monterrey this weekend. SIL and dd are attending a wedding in Carmel where no children are invited. (SILis a groomsman). So I get to hangout in Monterrey and baby sit my adorable grandson . Yippee! I think it slipped my mind because I'm in the thick of parent/teacher conferences and officially brain dead. Staring at the bay will be very good for me
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This is the best time to go to Monterey. Dh and I were supposed to go in April, but I was just Dx and too sick, so we couldn't go. Planning to go next year.
Lita
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Caryn, that photo of lil Miles is a hoot! A picture worth a thousand words!
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Nel, well-said. "I think all of us have down days-the trick for me is to not stay there for long. Time is too precious." Sattipearl, I think that pacing ourselves is a good way of adapting. Shelley, I like it that you have your word, "Fortitude." I suppose I have several little mantras such as "Just keep dancing" (thinking of Dory the fish who just keeps swimming), "Keep calm and carry on", "Carpe diem", and "I'm ok right now". Not too profound, but they help.
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It's been awhile since I've been on the forums, mostly because I've just been living life, but wanted to check back in today. I know how much grief and shock there is when first diagnosed. When I was diagnosed last December, I resented having to go back in the chemo chair after eight years of being cancer free. I was scared I would never feel good again. But things do change. Today I was sitting at my regular 3 week infusion of Herceptin/Perjeta and I realized that I actually don't even mind going to the clinic anymore. I love all the staff that have become my friends, and my oncologist and I even had a 30 minute chat about stuff that wasn't at all related to cancer. I started this journey 11 months ago thinking life was just about over, but just two weeks ago, I was in Nicaragua doing this! Don't give up hope.
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DGHoff that makes me smile tonight! Caryn, that picture of miles is priceless!
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Love your uplifting post and photo, DG!!
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