Re: Calling all stage iv sisters
 

I have been Stage IV (lung mets) since Sept 2007.

Re: Calling all stage iv sisters
 

I was diagnosed from the get go at Stage IV with mets to liver and bone. Just celebrated the beginning of my 8th year NED (DX 1/07). I'm grateful every single day.

Re: Calling all stage iv sisters
 

Hey, there!

I was just diagnosed with lung mets, after going off Herceptin just a few weeks before. Have an appointment to see preeminent bc oncologist, Dr. Lisa Carey, in Chapel Hill, to get her opinion on treatment plan. I am, of course, terrified, and, since it has only been a couple weeks, my emotions are all over the map! This thread has given me some hope. I would love to hear from any of you who had lung mets, what drugs you were given, and what worked the best.

Thanks!

Katherine

Re: Calling all stage iv sisters
 

Stage 4 since 2010..mets to lung

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I'm glad to hear stories of lots of time with lung mets.

Mine have been slowly but inexorably getting worse. I function pretty well--a bit winded on exertion, but I'm working on breath/body awareness and non-anxious approaches. Mixed results with that.

Any information on best practices for lung mets would be greatly appreciated.

Re: Calling all stage iv sisters
 

Just a suggestion Katherine -- post on HER2 vs your 2 cents -- more exposure I believe.

Been posting for maybe 10 yrs. That's where I go.

I welcome you and your input. We value everyone's thoughts, experiences. It's all about sharing. Some wonderful ladies in this forum.

Andi

Re: Calling all stage iv sisters
 

since my boyfriend was diagnosed with stage 4 colon cancer, mets to the liver (one 8 cm in size), i've been struggling. but i cannot tell you how many times i've cited YOU women to him as positive reinforcement. he has so much hope and positivity and i hope every day that he is granted lont-term survival or perhaps even NED someday. hugs to you all. it made my heart feel so much better to read your entries.

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Just wanted to say I am still alive and kicking Diagnosed October 2012 and stage IV pretty much from the get go. Mets to liver and brain. Currently NED for around 9 months. Hugs everyone.

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I love this site, but I wish it had a "like" button. Keep the good, hopeful news coming, friends!

Amy

Re: Calling all stage iv sisters
 

Last year I was diagnosed as stage 3B with a left-sided breast tumor, mets to the left axilla and an affected internal mammary node behind my breast bone. I took neoadjuvant TCHP from 3/14-07/14 and had a pathologically complete response to treatment in August 2014 (lumpectomy and SND). I did proton therapy to the left chest wall from 10/21/14-12/9/14 and continued on 16 doses of herceptin finishing on 1/28/15 of this year.

Last week I was diagnosed with metastatic breast cancer (HER2) to my cerebellum with a 3.5x5 cm lesion that was well differentiated and not well vascularized. Evidently the amount of edema I was experiencing, which was completely overlooked by my primary care doctor, radiation oncologist and medical oncologist over the past months, could have killed me in my sleep.

A bone scan yesterday revealed minor metastatic disease to my lower ribs (both sides) and opposite sternum. I will undergo a PET scan on Monday for further diagnostics.

From everything I have read the risk of HER2 metastasizing to the brain actually is a known risk, especially concurrent to a pathologically complete response to TCHP. This was never discussed with me, even though I had progressive symptoms of ataxia, dzziness, occipital neuralgia and vomiting.

I have been actively reading up on how we can use targeted therapies both systemically and in the central nervous system to try to combat this. We know that my HER2 cell line did respond to the targeted therapies systemically -- but my central nervous system appears to have functioned as a reservoir.

Right now I'm to heal for 4-6 weeks before undergoing something like gamma knife to the tumor bed. I am keen to take advantage of the radiation increasing my blood-brain permeability to targeted therapies during that time -- though I have to get my team on board. It seems to me that if we throw more at it sooner then we might actually gain some ground on this disease.

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I guess I'm not really that long term yet, but here goes: I got scan results back today - there's still inactive scarring in my bones (T10/11), but otherwise, I got a clean scan - nothing in the organs, and brain is clean, too.

I feel blessed and very, very grateful. I have been on Herceptin / Perjeta / Xgeva only since July 2014, and can at this point lead a perfectly normal life (except for treatment every 3 weeks, and scans). When I was first diagnosed I felt like I needed to get my things in order immediately. Now, I am hoping I will still see my daughter have her first double digit birthday in 3 1/2 years.

One day at a time. Life is good.

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Hello everyone, I am so glad that this thread is still going. I have just had a read over right from the first post. I am feeling sad to see how many we have lost since then, but also buoyed by how many of us are still here.

I am currently NED, and have been this time around for around 20 months. On Herceptin only.

Best wishes and hugs to everyone!

Dawn. Xxxxx

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Adding myself to this thread. I am just getting ready for my third round of THP. I have found the Taxotere a bit more difficult to tolerate this time around. When I had my first treatment as Stage II, I was able to work. Not so much, this time. I just filed for STD. I'm having a rough time with that, I am a workaholic and I identify myself through my work. I'm looking forward to being able to get back to work soon but I assume that will be once I am done with the taxotere. The only problem with that is my oncologist said this treatment is indefinite. For those of you who have had THP, how long did you stay on taxotere for?

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Hi Tracy,
so sorry you're back in this club... no one needs this. Not sure whetehr you heard back on your question elsewhere, but I had 6 cycles of Taxotere, Herceptin and Perjeta (at I believe 80% for the latter 3 cycles). Since then I am on H+P only - so far stable. Scans coming up next week, though... We'll see what that brings.

Maybe ask for a dose reduction if it's really bad? My onc back then said it's approximation anyway, and going down to 80% will not influence the outcome of treatment...

Hope you're making it thru Taxotere ok...

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Lung mets since July, 2015. Been on many different chemos for skin mets but lung mets are really deteriorating my quality of life. Not sure what I'll be on next...

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Have not been on site since 2012, still here, still her2+, whew, got a question, Dr recommending navelbine, can anyone give me some feedback as to side effects, efficacy for them? Have PET scheduled for Tuesday and will have to make a decision as to whether I'm ready to go again. Since failing kladcyla (sp.) I've been on perjeta and herceptin, perjeta, herceptin , gemzar, carboplatin. Finally had to take a break. Diarrhea, chronic UTI, we're going to do me in. I've been at this since 2008, originally fx 1995 with ER+, had 13 year break, them came back her2+, with mets to bone.

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5 1/2 years still here, thank the Lord!

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Six months after herception treatment, lung mets. Aug. 25, 2015. Will finish chemo Jan 8, 2016. Spots all gone, but will be on herception for the rest of my life, every 21 days using IVs.

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I was on Herceptin for the rest of my life in 1998.

It was brand new, fast tracked by FDA made available 1 mnth after my recurrence throughout my liver.

I did 9 mnths of Taxotere (2 mnths in I added Herceptin). With a pleural effusion and peri cardial effusion, I could barely walk or talk above a whisper. Did just Herceptin -- for 10 yrs.

Have been off since 2008.

Still here.

Did 3 yrs of weekly Herceptin. Then switched to triple the dosage every 3 wks.

Doable.

I wish you the same, Ariana...!

Re: Calling all stage iv sisters
 

Just wanted to say I am still around.
I started out a little over 4 years ago at stage IV with mets to liver. Did Taxotere, Carboplatin and Herceptin which worked super and cleared those mets. Cancer came back on me, 5 tumors in the brain. WBR and a Cyberknife procedure, and I have been NED for about a year now.

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Re: Calling all stage iv sisters
 

Well, guess it's time to update the list? Or should we just continue the conversation among ourselves?

Yip, you heard/read it right. I just used the word 'ourselves'.

Have experienced changes in my bowel movement the last couple of years. Requested an early Colonoscopy which came back benign (diverticulosis). Always thought I'd get another Lynch Syndrome cancer as my late Mother, who passed away at 91 years of age two years ago, had been treated successfully for Non-Hodgkin's Lymphoma when she was 75. And 2nd Brother, who's 10 years my senior, is a 7 year colon cancer survivor.

Well, guess what? I finally hit the JackPot!

1. Dilated appendix with thick wall and central hypodensity, without significant surrounding inflammatory changes or fluid collection. These findings may
represent early appendicitis or mucinous neoplasm. Mild right lower quadrant lymphadenopathy is also present.
2. Interval development of multiple hypodense lesions in the right hepatic lobe. This finding is concerning for metastatic disease. Given the appendiceal findings, hepatic metastases is a consideration. However, the patient also has a history of breast cancer, with metastatic recurrence an additional consideration.
3. Stable benign hepatic hemangiomas.

Will see the oncologist Wednesday to discuss the result. No, he did not order the scans. The nurse practitioner at the clinic near FIL's house (We've been staying in the country to help take care of the soon-to-be 93-year-old 'DeDaddy') had ordered it after I had complained about the discomfort in the lower right quadrant and pressure on the right side of the bladder. I've been having frequent UTIs since the total hysterectomy five years ago. She ordered an ultrasound at the main hospital in our town and right after the procedure I was told to have
a CT done the same day. She called me after hour (6:20 pm) and wanted to see me Monday to discuss the result.

I was told to make an appointment with my oncologist. I did, and the earliest appointment is March 4th. But a few hours later, I received a call from the hospital/clinic and was told to see my oncologist this Wednesday.

Guess they had figured out it's a serious situation ... :)

Felt very blessed as I'd known so many successful stories and wonderful fighters through this thread. The nurse practitioner probably had never expected my calm reaction ... Yip, two brain tumor (Central Neurocytomas - unrelated to BC, though could be due to the same gene defect I'd inherited) surgeries, two breast cancer surgeries, a total hysterectomy, and now possible liver mets treatment...

We'll get it taken care of, just like all the other challenges we had faced before.
Thanks for everyone's encouraging story. "You lift me up ...".

Re: Calling all stage iv sisters
 

Dear Jackie,
That's rather sad what happened with you to share the same title of stage 4 fighter.
There are plenty of us fighting including me. Like what you mentioned, there are many success stories which always give me hope and energy to fight.
Regards from Thailand
Gift

Re: Calling all stage iv sisters
 

Sorry to hear this, Jackie. Looking forward to hearing what solid plan they put in place for you that will facilitate your long survival.

PS. you are incredibly strong for remaining so calm and objective.

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Jackie, I am so sorry to hear this. I have a pet scan coming up Feb. 9, and dreading what it might show. My breast cancer from the right breast, went to my lungs last
Aug. I just finished chemo, and had just Perjeta and herception the 25 of Jan. Will be on Herception for life, not sure how long perjeta will stay. I am having different symptoms and am dreading the scan results. Tired already of the running back an forth as I have a heart eco the 8, pet scan the 9, treatment the 15 and meet the onc. afterwards. Some days I want to just stay in bed. Prayers being said Jackie.

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Jackie,
So sorry you are dealing with this. Prayers and hugs.

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Jackie,

I'm so sorry to hear about your latest setback. It seems that you have dealt with so many health issues throughout the years. It just doesn't seem fair. However, rather than being bitter you seem to be handling this as a true warrior. I admire you. I don't think that I could be as strong.

Take care,
Brenda

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Sorry to hear this Jackie! However, as someone living well after 4 years with bone and liver mets, I am sure you can deal with what is in store. After so many health related problems, you certainly have the courage to face this new one.
Best wishes..... Pam

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Dear Jackie, I am so sorry to read that you have to go back into the fight once more. Today is Wednesday. I am thinking of you and I am hoping your oncologist is able to give a clear diagnosis and build a plan with you. please keep us updated. We are with you. Michka

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Jackie, sorry to read your update. Please keep us up to date with how you go with the oncologist. Maybe check about local intervention for the liver.
Big hugs, Marie x

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Aw Jackie. At least you didn't let symptoms go by as they seemed vague and not that concerning. Make sure it is not just the appendix that is giving you a problem. Also make sure it is not a new primary versus mets if that is the path you are going down. I am thinking about you and have all fingers crossed.

Re: Calling all stage iv sisters
 

Stage IV since October 2013, initial diagnosis: right breast 6-7 nodes including node above clavicle, and a lesion on liver. 6 cycles THP with a result of COMPLETE pathological response. Continue vitamin H and P every three weeks and remain NED. My life is full and busy with swimming, cycling, skiing, snowshoeing, yoga, new grand baby on the way....so much to live for, amen.

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Thanks for sharing, Colleen. That's exactly what I needed to hear right now.

And thanks for everyone's encouragement, I really needed it. The Chinese New year is coming up soon (Feb. 8th is New year's Day for the Year of the Monkey) and the tradition is not to say unlucky words nor to share bad news during at least the first three days of the new year. I had called my 2nd Sister yesterday morning and she's not going to share the news with my other siblings (all of them are living in Taiwan) until after the 10th.

Will see the GI doctor to have the CT result evaluated Monday. Looking back, I'd had some irritations in the liver area for at least a year. But we just thought it was caused by the hepatic hemangioma ...

Ready - set - go!

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Jackie, its not easy road but a road we CAN make it down. Believe you will be ok, the mind is a very powerful thing! Besides the traditional chemo and targeted therapies I have used acupuncture, meditation and visualization along with lots of exercise and solid nutrition. I am not perfect but I try to be better. I know some of the people who read this may not agree but I read the book Radical Remission and it was a bright light during a dark time for me.

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Thanks for sharing about the book, Colleen. She (the author) sounds pretty credible.

https://www.psychologytoday.com/blog...ical-remission

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Jackie,

I'm so sorry you've "graduated" to the Stage IV club. It does put everything in a whole new light.

You've always been so kind and supportive. Thank you for that, and rest assured you are loved here.

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Jackie, Year of the Monkey, Year of the Clown, it's all the same, Cancer doesn't discriminate. And there are no lucky pennies, just very determined and well-educated self-advocates who FIGHT for their own survival. My money is on you. I'm very sorry that you have to deal with this beast again. You are so supportive to us all, hopefully we can return the favor as you get things figured out and get a plan of action. Happy New Year, and we'll go ape for you!

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Thank you both for the kind words and encouragement.

Saw the GI surgeon today. 'There's no definitive answer (as to whether I have appendex cancer and if so, which cancer has metastasized to the liver) until a biopsy.' Will fast from midnight Thursday and have a blood draw Friday at 11:30 am, then liver biopsy at 12:30 pm. Whew! So glad they have got the ball rolling ...

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I haven't posted here in a long time, but wanted to check in to give hope where I can. I need to update my signature, as my latest scan (Jan) still shows all is stable for me. I have been on Herceptin and daily Tykerb since May 2012, when I stopped my hard chemo. My doctor has never had a patient stable on this regime this long, so we are in uncharted waters. Wonderful, blessed, smooth waters. When I was diagnosed in 2011, stage 4 From the start, my second child was three months old and I didn't know if I'd live long enough for him to know me. I know longer just hope, I believe. We are not statistics and there is life beyond this diagnosis. Hugs to all my sisters.

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I'm so happy for you.