Stage IV NED crew : lets support each other
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Heidi,
Interesting! Thanks.
Tina
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I haven't been on here in forever! so a big
HI ALL!!!!
I glanced through a few posts and am glad to see other long timers still here. What a ride.
Just wanted to let everyone know that I'm coming up on 5 years for starting treatment for ER-/PR- and HER2+++ liver mets. I'm still on H&P every 3 weeks with regular ECHOs and am still NED. Tumor markers continue to be low. This summer I had the first scan in 2 years and it was all good. Hooray!!!! I'm now living in New Mexico with a new oncologist and she, like my Maine one, thinks because of liver mets I should stay on H&P.
FYI-
Diet: sugar, wine, meat, carbs, veggies, fruit, milk, chips, G&Ts (not in any particular order). I do try to eat organic foods and farm raised meat.
Exercise: hiking, riding horses, biking, dog agility, nordic skiing, and recently started going to the gym to increase upper body strength.
Side Effects: muscle cramps, neuropathy, itching (mostly arms and neck at night), drippy nose, poor digestion (I'm supposed to stay on the FOD-MAP diet which is a bore), fatigue which affects my ability to exercise daily and has resulted in increased reading and watching movies and PBS shows.
ECHOs: Mine bounce between 50 and 65 and because I live with a heart surgeon I get an insiders perspective-- Echo of 50? don't worry, Be Happy! There is a lot of subjectivity.
Tumor Markers: every 3rd treatment, consistently low since about 8 months into treatment.
Peace, Health and Love to you all,
Miche
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Thanks Miche for checking in and letting us know your doing well! 5 years, wow, and yay for you! Stories like yours give us all hope for the future. Hugs.
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Hi everyone!
Just writing in to confirm that I am NED. I went to my MO yesterday for my monthly appointment and we reviewed in detail my most recent scans. We are absolutely safe to say that I am "stable" and there is no evidence of cancerous activity happening!
I had to hear "in person" as my MO had called me on the phone last week to tell me that I am stable, but I needed to go over all the minute details of the scans with him in person for it to become "real."
Now I keep on doing what I have been doing because whatever it is that I am doing, it is working!
To me the most important factors that are working are: being a "good patient" and taking all my medications (no missing doses unless discussed with MO team), sleeping as much as I need (last night I slept for 12 hours! WOW!), cutting back on work and work-related stress (I went from working 6 days/week to 3 days/week), practicing Being Here Now, exercising a LOT more than ever (I try to attend at least three 1-hour high intensity cardio classes a week, plus a lot of walking, and one yoga class a week), not beating myself up if I don't exercise all week long - just picking myself up and getting back to it the next week. There are other factors, but I think these are the main major ones that I can say for certain are helping me through this.
Hope everyone is feeling well and doing well!
((((((((((((((((((HUGS!))))))))))))))))))
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That's wonderful news LovefromPhilly
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Great to hear, LovefromPhilly!
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Great News LoveFromPhilly!
XO
Andi
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thank you friends!! Doing a dance 💃🏿 over here!!!
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Good news, Lovefrom Philly! Keep in keeping on!
Tina
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Congrats LovefromPhilly! I see your signature says 6cm+ Stage IV (de novo right?). Did you have surgery to remove your primary tumor? When I was initially diagnosed, my breast surgeon said I needed shrink my tumor and then I could have surgery. Now that my tumor has shrunk, my oncologist says studies have conflicting results about whether removing the primary tumor helps or not. Now I"m not sure what to do. I haven't removed it, but I kind of want to. I feel like the less cancer I have in my body the better. Curious to hear what you went through.
Question for all - As for diet I still don't know about sugar. I've continued to eat sugar, carbs and other junk food and I have been feeling a lot of pain where my primary tumor is. I just have a bad feeling that I'm feeding my cancer and hurting my treatment by not sticking to my strict plant-based low carb diet. I believe the only time I felt this pain was before I was diagnosed (the pain made me go to the doctor). After my diagnosis I was on a very strict organic plant diet for the first 3 months and felt no pain during that time. Pain started after i stopped my strict diet. Unfortunately now that I started eating junk food again, it is so difficult to stop.
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adymaria I have had surgery to remove the primary tumor. If offered take it. The less tumor burden the less chance of mutations I believe. I know with HER2 positive, reoccurrence after reaching NED to the other breast has happened so I removed both. I did nipple sparing and my breast look great. No regrets!
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Hello to the lovely NED crew...despite falling off the NED wagon a few times treatment keeps allowing me to scramble back on board. CA-15 rising to highest level in past 8 years sent me for laparoscopy but surgeon found nothing on peritoneum (yeay) and October PET scan was clear so my onc says I am still NEAD (she does like to show the word active into the mix0. Next PET booked for the end of January. Much 2019 will mark 8 years since initial diagnosis, and also five years with mets.
I thought I would share my treatments to encourage everyone who pops in to look at this thread to keep on working towards NEAD. It can be done. And then extreme vigilance to stay NEAD.
Diagnosed ILC March 2011, with HER2+ borderline, later diagnosed as HER2+ as well in September 2017 and told I should have been treated as triple positive from the start. Oh well. No use crying over spilt milk.
Surgeries: Right mastectomy, then left mastectomy, then double reconstruction with two other associated surgeries, five exploratory laparoscopies, liver resection, two hernia surgeries, two port insertion surgeries.
Chemo: 2011: FEC-T , 2014 then Capcetabine, 2017 Taxotere, then on to Herceptin and Perjeta. Now on Kadcyla since September 2017.
Aromatase inhibitors: Arimidex then Aromasin then letrazole then Tamoxifen and now been on Faslodex since September 2017 when activity showed up in the peritoneum.
Bone meds: six doses of Zometa, but still got one cheeky little bone met Dec 2017 but being put onto an injection of Denusomab every four weeks has done a major sclerotic number on it and nothing new in the bones since.
So, despite mets having been variously found in liver, bone, peritoneum, I am still living my life, on a treatment cycle of Denusomab and Faslodex every four weeks by injection, Kadcyla every three weeks via my port and a PET scan every three months to check me out. My main issues is a constant level of fatigue that is wearisome and serious neuropathy in my feet and finger tips. i do have to pace myself, and rest, but I consider that a small price to pay to be alive.
I live in the UK, where it is going to be a wet and windy Christmas. I'm not religious in the slightest but I am glad to be alive and am looking forward to travelling later today to join my family for a few days of festive fun. I'd like to send out my warmest wishes, love and hopes for continued good health to us all during 2019 and beyond. You know what, no one else knows what we have gone through except us, we all deserve some of the good things that life can bring.
Best wishes, Boo.
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Dear Boo
Wishing you a very merry Christmas from a wet and windy Yorkshire! Delighted to see your post and continuing positivity. I will be heading towards 2 years post mets dx next April. With you on the fatigue and oh my goodness joints ache but happy and grateful for NED right now.
Liz
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Well said, Boo. My best wishes to everyone for a joyous holiday season. All I want for Christmas is another year to see the next, and with good scans again last week, I'm feeling confident. I am grateful beyond words to still be here to celebrate my 60th birthday and 4th Christmas since dx in June 2015. Happy New Year!
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Boo,
Thanks for your optimism tonight, I needed it. I love this site. Anytime I am struggling, or wondering about something, I login in and find amazing people like you, to help guide me through. Thank you.
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Writing on behalf of my wife as she (stage IV patient) doesn't participate in these forums but I am a daily reader. A small glimpse of hope (and strange hard to explain ,,new" data): "Long-Term Survival of De Novo Stage IV Human Epidermal Growth Receptor 2 (HER2) Positive Breast Cancers Treated with HER2-Targeted Therapy", article published in "Oncologist", 23 August 2018 (please google it because to post links, for some reason, is not allowed for me). Merry Christmas to all,
Saulius, Lithuania
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BSandra, thanks for posting that article. The data is very encouraging to me being 3.5 yrs. out from dx and dx as Her2+ MBC de novo.
Happy 2019 to All!
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seeing everyone’s post is so inspiring. my last scan in september showed nead snd i was ecstatic! my next scan will be february and i’m already feeling the anxiety. i haven’t been on this site in a while and got a little sad reading the ibrance thread. a lady that has been so positive and a cheerleader for all just found out she has progression. it’s just a reminder that it will happen one day
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NEAD for me after PET scan today! Cheers
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Wonderful news Chemokaze
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Woot! Woot! Congrats Chemokaze!!!!!✌️✌️✌️👏👏👏❤️❤️
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Wonderful news Chemokaze
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Pet scan this week after 6 months since the last oneand stil NEAD. Love reading this thread and wishing you all well!
Love to all,
Lauren
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Congratulations to all of us! I just got the thumbs up on my markers today at my quarterly visit! They don't scan me anymore unless the markers change or we notice something. Hard to believe that March is five years for me - all NED once I completed the "tri-fecta" of treatments in November 2014. Much bliss to everyone! XO, Screech aka Tammie
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Well I think I'm sticking around for a while longer. I got my PET scan results today and nothing showing that is obvious cancer. The PET scan tech did call me personally as he said my scans were a bit abnormal, my thyroid is enlarged and I had a really bright spot show up in my front teeth/jaw. He doesn't think either issues are cancer so I'll settle for that for now. Still waiting for my MO to call to see what she thinks.
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Okay ladies. I’ll chime in too. First PET after chemo, surgury, and radiation (SBRT to femur met and chest wall) shows NED. Some oligo Mets studies show up to a quarter of ladies out 20 years NED. I’m taking a deep breath and trudging onward! Love this thread. It’s reined my worries and sadness in on many occasions during my first year of de novo MBC treatment. To many many many more years ladies. Hugs 🤗.
Sarah
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Hi Sarah,
Thanks for posting your NED news. So great to hear positive stories and like you, this thread keeps me going.
Can you say a bit more about those oligo mets 20 year studies please?
Liz
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congrats to everyone who has shared positive news lately!
Sarah - interesting and encouraging stat about oligomets! thanks for sharing.
Tomorrow I have my first scan (liver MRI) since starting my chemo break. Hoping and praying that I get good news and stay in this group!
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Congrats to all with NED news! Keeping fingers crossed for you, thriving!
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woohoo....I am back. I had too many to count brain mets. Took a while, but they are all gone. At least for now. Have been ned below the neck since 2017. I'm glad to be here, but hate this up and down.
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