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Old 04-19-2013, 10:40 AM   #1
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Scans and update-

Well, I had all my testing done this last week with a MUGA, a CT scan of the chest/abdomen/pelvis and an MRI of the brain. My body is still clear, and my MUGA was still good, praise God.
My brain MRI showed I have two tumors left out of the original five, and they are about half the size. I was pretty happy with these results in general, because they are definitely towards the positive rather than the negative, but my radiation oncologist made comments that were so depressing I ended up feeling like there is no hope for a few days. He would say things in conversation like...once it spreads to the brain it, unfortunately, starts you down a path you just can't change...or....brain mets patient usually within a year, if they live that long, have a major recurrence, and a comment about how poor my prognosis was. And I know all the discussions we have had about doctors not knowing how long a patient has, and everyone is different in how they respond to things, and that there are several people here who have/had brain mets that have done very well, but its still very difficult to have that positive attitude you need to have when it feels like the doctor has already given up on you. I read Joanne's post, and saw that one of her doctors was also the same way. I could really identify with how she feels.
They also said that I have demyelinazation that is worsening, and appears on the MRI to look like multiple sclerosis, but they are sure it is from the whole brain radiation, and that I will have worsening difficulties with short term memory and cognitive abilities. Ugh.
So even though my results were positive (I feel like) I have been in a depression/funk for the last few days, and I think I need to go on an antidepressant on top of everything else, unless someone can recommend a good way to treat depression naturally?
My oncologist wants to start me on Tykerb next week, along with my herceptin, which seems to be doing a good job holding my body NED. Im a little stressed and worried, because I have not really recovered from my whole brain radiation and the steroid nightmare. Im just so weak and get tired really easy...sleep a lot. Im never hungry and Im nauseated a lot..so I don't eat much. I've lost almost 20 pounds in the last two months, so I worry about a drug that causes so many GI side effects.
I really didn't mean to get on here and whine...I meant to just update everyone, and I apologize. I guess I started typing and everything just came out. At any rate, they are checking with my insurance for pre-approval today, and to see what my copay might be for Tykerb. They said my copay might be as high as 2000 a month! which is more than I make on disability, so looking into programs that might help.
Diagnosed in October 2011 Stage IV with metastasis to liver.
January 2012 after double mastectomy, started taxotere, carboplatin and herceptin.
December 2012 was diagnosed with five brain mets, and had whole brain radiation.
Around July 2014 two mets in brain, one a residual spot and one new one growing in size. Received Cyberknife on both areas
April 2015 remain NED
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Old 04-19-2013, 08:12 PM   #2
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Re: Scans and update-

I'm so sorry you have to be going through this. It's an incredibly hard thing to go through just to have a doctor say such things. We need those around us to help us, not bring us down.

I just switched oncologists and I told the new guy emphatically that I am going to live well into my 80's! (I'm 43.) I've told every one of them that I don't want predictions or statistics at all.

Since the start of my "journey" last summer I've had periods of sadness, panic, depression, and funk that have lasted longer than just a few days. Most of the time I would tailspin into a very dark place and then get better. Facing what we have to face is not easy. At one point my husband asked me if I thought maybe I was clinically depressed, and I asked him what he thought was normal for someone in my situation? It was hard for him to hear my true feelings about things, but once I spoke them it seemed to lose power and I felt a little better.

SSRI type antidepressants work for many people, but they can be a big commitment because they take a long time to take effect and a long time to come off of...For what it's worth, for me Xanax has been a friend in some of my worst of times. It helps quiet my mind and make it easier to think more positive, reasonable thoughts. I don't take it very often, but when it does it helps and I get a great night's sleep to boot.

But most of all, your doctor does not know what will happen to you!!! I don't care how smart he is, he's not psychic!!! I would imagine a picture of him on a piece of paper, then crumple it up, throw it in the trash, and think vivid, colorful, larger than life size thoughts and pictures of yourself happy and healthy 5, 10, 15, and 20+ years from now!!! Think of Denise, Steph, and the other ladies who are beating brain mets every day!!! His words are nothing. Your future is REAL! --This is the type of thing my therapist has me do and it helps me a great deal.

You'll get through this!! You are an incredibly strong person, and a huge inspiration to me!!


7/30/2012 Diagnosed with metastatic breast cancer
8/3/2012 CT scan mets to liver (major!!), lungs, spine, and skin
8/8/2012 Biopsy results: invasive ductal carcinoma
ER+/PR+/HER2+ amplification 4.8 (whatever that means)
8/13/2012 Brain MRI (clear); bone scan verified CT scan
8/14/12 started Taxotere/Carboplatin/Herceptin, 2 rounds (added Neulasta after 9/4 treatment)
9/4/12 CA 15-3: >3000
9/15/12 CA 15-3: 840
9/15/12 started Taxotere/Perjeta/Herceptin, 4 rounds (no Neulasta)
10/29/12 CT scan showed dramatic improvement in all areas - largest liver met 2.5 cm, largest lung met 10 cm
12/17/12 Started Perjeta/Herceptin, 2 rounds
12/17/12 CA 15-3: 17 Yay!!!
1/21/13 CT scan showed improvement - largest liver met 1.9 cm, largest lung met 2 mm
1/29/13 CA 15-3: 12 Started Herceptin only
3/12/13 CA 15-3: still 12 yay!! Back to Perjeta/Herceptin
3/29/13 CT scan more improvement - largest liver met 1.2 cm, some lung mets disappeared!
3/7/14 started Tamoxifen
6/27/13 - 1/2015 CT scan stable
Began a diet of only single ingredient foods and went nearly NED excepts for some tiny lung spots - ask me if you want to know more...
1/2015 - 1/2017 CT scan stable
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Old 04-19-2013, 08:40 PM   #3
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Re: Scans and update-

KsGal...I loved your "Praise God!!!"

I will be lifting you up in prayer!! When I was first diagnosed...OVERWHELMED...finding a "pea"...6 months later to NOW!! Yet, I strongly believe that God is Faithful!! Doctors like to "think" they have the hand of God...however, there are those of us that know different!!
As prayer is Powerful and is an amazing RX!!

As to an antidepressant, I've been taking Buspar for a couple of months as I got to a point where I could not stop my tears...it is helping me alot, not what I wanted to do, but working for me!

Rachael, I really agree with her...doctors do NOT know what your future holds...Have Faith, Trust and believe...I can tell that you are a strong woman!!!

Our test can be our "Test"imony!!

10/18/12 Found pea size lump right breast
11/7/12 Biopsy
12/14/12 Lumpectomy
1/4/13 Rexcision, NO CLEAR MARGINS!! :(
2/11/13 Mastectomy with Expander Placed
2/15/13 INFECTION at Mastectomy site...emergency Surgery!!! Expander removed :(
DX: DCIS, IDC, Stage 2a, 2.7cm, 1/5 nodes positive
ER/PR-, HER2+++
3/28/13 Port placed
4/1/13 Begin 6 Cycles TCH Therapy
4/1/14 Finished Herceptin!!
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Old 04-19-2013, 11:56 PM   #4
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Re: Scans and update-

Sorry that you are feeling down, specially when the results all sound good. I think the women on this site are ample proof that there is no predicting outcomes. Living with Stage IV disease means we are aware of its seriousness, but are entitled to hold on to the positive in our lives. I wish doctors would learn to speak in terms of the possible, the probable, but also the exceptions which give us hope. Your onc seems to have the bedside manner of a flatworm!
Personally I am avoiding the anti-depressants, not wanting to add more "poisons" to the mix. When i feel down, I try to immerse myself in something that gives me pleasure - exercise, walking or reading during the day, or music in the dark hours.
But, whatever works for you.....
Warm wishes.... Pam
Diagnosed 2004: Lumpectomy - 2 tumours, both grade 1 infiltrating duct carcinoma, about 12mm. ER+,
C-erbB-2 status 3+.
Clear margins, no nodal involvement.
Radiotherapy, i year Tamoxifen, 4 years Arimidex.
Rediagnosed 2012: Multiple bone metastases.
3/12: began on Marianne trial - T-DM1 + Pertuzamab/Placebo.
5/12:Unexpected development of numerous bilateral liver mets. Came off trial.
Started Docetaxol/ Herceptin + Zometa.
8/12:Bones stable +major regression in liver (!)
9/12:Can't take any more Docetaxol! Start on Herceptin and Tamoxifen. Cross fingers!
Changed to Denosumab.
11/12: Scan shows stable - yay!
11/13: Still stable :-) !!!
1/16: All stable, but lowered calcium, so switched to Zometa 3 monthly.
2/19: Happily still stable on Herceptin, Letrozole and 3 monthly Zometa.
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Old 04-20-2013, 04:22 AM   #5
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Re: Scans and update-

Screw him! You (and I) are NOT statistics. I had a doc say something sort of like what you heard, at a lecture for women with brain mets recently. Really? You're talking to a room FULL of people with brain mets, and their terrified caregivers...and you say things about "dying within a year", or "no long-term survivors"?! And they pay you for that?

If it's at all possible, I'd change rad oncs...that kind of thinking is poison. It's not easy to do...but I had to do it once already. I need all the encouraging energy I can get...I can find the dark places in this journey on my own thank you very much...I don't need one of my docs to be my tourguide through hell.

Next piece of unsolicited advice... ... get on an antidepressant! Seriously...I couldn't face this mess without Zoloft to calm those demons. I have been on it for more than 3 years, at varying doses, and have had absolutely NO ill effects whatsoever. You need every available support for your state of mind and emotions during this crappy time in your life. Once this mess is behind you...and you don't need help getting your brain chemicals to play nicely together...you can always stop. I don't see any downside.

Tykerb. I'm on it. I read and heard all the scary side effects...and I know they are real and possible. I haven't experienced any of them. It's been the easiest medicine I've taken during this whole nightmare. I had exactly one bought of diarrhea...and looking back...I think it was something I ate...not the Tykerb. And really...Tykerb crosses the blood-brain-barrier...while Herceptin doesn't...and ANYTHING that might stop new lesions in my brain...seems like good juju to me.

Ks - I'm not a doctor...I don't even play one on TV...but I'm stuck deep in the heart of this brain met nightmare too...and it sucks worse than anything I've had to deal with so far. No doubt about it. But we're not alone. We have each other...and some of our sisters on here have adjoining seats on this rollercoaster ride through hell. I picture us all belted in...holding onto each other...and refusing to stop in the scary places. PM anytime...Hell! at the doses of dex I'm on...I hardly sleep anyway! Chances are, I'm up!

It's hard not to listen to the gloom and doom statistics...believe me, I know how you feel. Try to focus on getting through the here and now. We can always look back and trash those statistics (and the jack@$$ doctors who quote them) ...once we have the perspective of winning and moving on. Which BTW...I'm hoping to do soon...these steroids are driving me wild.

Take a deep breath...keep praising God...since He's the only one whose opinion matters anyway! Feel the love, support, prayers, and the big hug coming across the country to you!
1/11-needle biopsy
2/11-Lumpectomy/axillary node dissection - Stage 3c, ER/PR-14/17 nodes
3/11 - Post-op staph infection,cellulitis, lymphedema,seroma,ARRRGH!
4/12/11-A/C x 4, then T/H x 4, H only,Q3 weeks
8/26/11 finished Taxol!!!
10/7/11 mastectomy/DIEP recon
11/11 radiation x28
1/12/12 1st CANCER-VERSARY!
1/12 Low EF/Herceptin "Holiday" :(
2/12 EF up - Back on Herceptin, heart meds
4/2/1212 surgery to repair separated incision from DIEP recon
6/8/12 Return to work :)
6/17/12 Fall, shatter wrist,surgery to repair/insert plate :(
7/10/12 last Herceptin
7/23/12 Brain Mets %$&#! 3cm and 1cm
8/10/12 Gamma knife surgery, LOTS of steroids;start H/Tykerb
8/23/12 Back to work
12/20/12 Injure back-3 weeks in wheel chair
1/12/13 2nd CANCER-VERSARY!
1/14/13 herniate disk in back - surgery to repair
1/27/13 Radiation necrosis - edema in brain - back on steroids - but not back to work - off balance, poor cordination in right arm
5/3/13 Start Avastin to shrink necrosis
5/10/13 begin weaning steroids
6/18/13 Brain MRI - Avastin seems to be working!
6/20/13 quarterly CT - chest, abdomen, pelvis - All Clear!
7/5/13 finally off steroids!!
7/7/13 joined the ranks of the CHEMO NINJAS I am now Tekuto Ki Ariku cancer assassin!
7/13/13 Symptoms return - back on steroids
7/26/13 Back on Avastin - try again!
8/26/13 Not ready to return to classroom yet :( But I CAN walk without holding onto things! :)
9/9/13 Brain MRI - fingers crossed
“ Life is a grindstone, and whether it grinds you down or polishes you up is for you, and you alone, to decide. ” – Cavett Robert
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Old 04-20-2013, 03:34 PM   #6
Andrea Barnett Budin
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Re: Scans and update-

Okay Ks -- you have no reason to apologize. You came to the right place. Here. Your rad onc is a j**ckass!!! Seriously -- change docs!!!! Talk about red flags... I don't care how many degrees he has, he has zero bedside manner.

I had an onc who was a brilliant moron. Emphasis on "had". He would sit at the counter in the exam room with his back to me as I dressed and talk into the phone, dictating his notes. He would say things like, It is remarkable that this patient is still alive. Most would have succumbed to this disease yrs ago.

Excuse me, I'd think. Did you just say that out loud??!! Yes if I went by what I read, I had less than a 15% chance of surviving for a yr. Less for any longer. Well, to hell w/that. I tossed that book/those books and turned to the ones who spoke of the victors in Life, the Olympic medalists who rocked the statistics despite blah, blah, blah...

My friend told me that's fine. Her lucky # is 13. YOU ARE #13, THAT'S IT!! YOU'RE GOING TO BE FINE, AND THAT'S ALL THERE IS TO IT. She had a rhinestone pin made for me that said #13. It has become my lucky #!! The Universe keeps sending that # to me -- messages that I am going to be fine.

So, what # would you like, Ks?? It's YOURS.

I've been on Zoloft since my bc metastasized throughout my liver. No side effects. Keeps me chemically balanced and able to fight on. Go for it. (You know I use supplements big time every single day since Oct '98 -- but I also use meds that keep my bld pressure normal, my cholesterol good, my depression in check, my need to sleep to help my body heal and restore itself. No shame in any of it.)

You go on a be a miracle. Surround yourself with docs and nurses who believe in you and are open to possibilities. You are no run of mill patient. Stay 10 miles away from the realists and the stupidly inhumane. Those pp should not be allowed anywhere near a patient. They belong in a lab, w/no human contact.

Re GI issues, I have had the bathroom drama in varying degrees since '95 w/chemo and neverending. I have tried 5 gastro guys and dozens of meds, non of which actually worked but for Lomotil and that knocks you out, which is crazy. I used to take Imodium pills. I farrrr exceeded the dosage. Cause I had to. To be able to leave the toilet. I reported myself to my onc. How many do you take?, he asked gently. 20...!!! Ok, he said, and what happens after you do that? I am normal. And what happens the next day? I am normal. So, go for it, he offered.

However -- I read some mnths back in a post from our dear Brenda that her onc told her to take LIQUID IMODIUM and it worked great. And it works amazingly for me!! A half cup usually does it. Sometimes I need another 1/2 cup. I carry a small bottle w/me at all times. And have back up bottles at home, just in case.

So don't worry. Whatever goes wrong, we can all gather around and offer our expertise, even though we aren't docs, we are professional patients. And that counts for a lot.

Keep drinking water alllll day! Essential. Horrid things happen if you dehydrate. Just get yourself into the habit, no matter what.

For nausea Phenegan worked for me. And if it failed on occasion I took Zofran. Granted that was the late 90s and maybe nowadays there are better ones, but my fav onc has told me -- you should never have to suffer. That's why we have pills to help you. At the first moment of pain -- take a painkiller, he said. That's why I prescribed them. I never over did them. But I knew if I waited to see if it would go away on its own -- I was being foolish. And the pain would not be controllable no matter what. THERE IS NO REASON TO SUFFER.

Sleep. You've been through sooo much, Ks. Your body needs to rest, for your body to repair and heal.

Energy -- see my energy boosting supplements in WHY I TAKE SUPPLEMENTS, please. Any questions, post or PM me. I am here for you.

When you can, eat a small handful of nuts. Protein. And nourishing. Easy. Feed your body. It needs fuel!!! Like your car... Can't go on empty...

With my love and my dittos all over the place re what Denise said -- I second every word she wrote!!

Andi BB
'95 post-meno dx Invasive LOBULAR w/9cm tumor! YIKES + 2/21 nodes. Clear mammo 10 mnths earlier. Mastec/tram flap reconst/PORT/8 mnths chemo (4Adria/8CMF). Borderline ER/PR. Tamoxifen 2 yrs. Felt BLESSED. I could walk and talk, feed and bathe myself! I KNEW I would survive...

'98 -- multiple mets to liver. HER2+ 80%. ER/PR- Raging, highly aggressive tumors spreading fast. New PORT. 9 mnths Taxotere Fought fire w/fire! Pronounced in cautious remission 5/99. Taxotere weekly for 6 wks, 2 wks off -- for 9 mnths. TALK ABOUT GRUELING! (I believe they've altered that protocol since those days -- sure hope so!!)
+ good old Vit H wkly for 1st 3 yrs, then triple dosage ev 3 wks for 7 yrs more... The "easy" chemo, right?! Not a walk in the park, but not a freight train coming at 'ya either...

Added Herceptin Nov '98 (6 wks after FDA fast-tracked it for met bc). Stayed w/Vit H till July '08! Now I AM FREE! Humbly and eternally grateful for this life-saving drug! NED since '99 and planning on keeping it that way. To hell w/poor prognosis and nasty stats! STOPPED VIT H JULY '08...! REMAIN STABLE... Eternally grateful...Yes is a world & in this world of yes live (skillfully curled) all worlds ... (e e cummings) EVERY DAY I BEAT MY PREVIOUS RECORD FOR # OF CONSECUTIVE DAYS I'VE STAYED ALIVE. Smile KNOWING you too can be a miracle. Up to me and God now...
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Old 04-20-2013, 07:22 PM   #7
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Re: Scans and update-


No, you don't sound like someone who's having problems from demyelinazation. Please get a second opinion (ask for the MRI's and sent them to another reputable hospital for a consult - Not sure about the modern day procedure - they probably can be sent via comuter/Internet now. The 2nd opinion doctor probably just need your [oral?]consent [form?]...)

Films are hard to read/analyze. When I was nearing the end of my rehabilitation 40 days after the brain surgery (Central Neurocytoma - unrelated to BC) in summer, 1990, my surgeon checked the wounds/scar on my scalp and said: "Looks good. When it heals completely, we'll have the 2nd surgery ..." I chewed him out right away: "You just love to cut [into] people's head!"

10 days later, the new MRI turned out pretty good and my surgeon said: "Miracle! There's no trace of tumor!" My Oldest Brother was sure that the surgeon was lying because of my prior reaction. 11 years later (2001)I had Gamma-knife to control 3 residue tumors that had been growing in the center. A year ago I had had three MRIs within six months (ended up having to pay for one of them by myself) to chek two other tumors - especially the one that's near the Thalamus. Eventually the surgeon decided there's no urgent need to take the risk. So no radiosurgery for now!

Exercise will increase the release of endorphin (aka 'Happy Hormone') Try to tap your feet, stretch your arms if you can't walk too far. Singing is also a good way to improve mood as it exercise the head area and it requires stretching our mouth - similar to laughing/smiling.

Heed Andi's advice. Yes, we are 'professional' patients! My gynecologist, brain surgeon, radiation oncologist have all retired. My medical oncologist and breast surgeon have moved to other towns and will probably retire pretty soon. And I really like the new (and very young) oncologist's energy and confidence.

About short-term memory / cognitive problem - I've been living with them forever! There are ways to compensate ...

Hang in there! Tell your doctor (if they dare to bug you about it again) that 'we are 'all' terminal'! Nobody will live forever!

Erythema Nodosum 85
Life-long Central Neurocytoma 4x5x6.5 cm 23 hrs 62090 semi-coma 10 d PT OT ST 30 d
3 Infertility tmts 99 > 3 u. fibroids > Pills
CN 3 GKRS 52301
IDC 1.2 cm Her2 +++ ER 5% R. Lmptmy SLNB+1 71703 6 FEC 33 R Tamoxifen
Recc IIB 2.5 cm Bi-L Mast 61407 2/9 nds PET
6 TCH Cellulitis - Lymphedema - compression sleeve & glove
H w x 4 MUGA 51 D, J 49 M
Diastasis recti
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Irrtbl bowel 1'09
Colonoscopy 313
BRCA1 V1247I
hptc hemangioma
GI - > yogurt
hysterectomy/oophorectomy 011410
Exemestane 25 mg tab 102912 ~ 101016 stopped due to r. hip/l.thigh pain after long walk
DEXA 1/13
1-2016 lesions in liver largest 9mm & 1.3 cm onco. says not cancer.
3-11 Appendectomy - visually O.K., a lot of puss. Final path result - not cancer.
Start Vitamin D3 and Calcium supplement (600mg x2)
10-10 Stopped Exemestane due to r. hip/l.thigh pain OKed by Onco 11-08-2016
7-23-2018 9 mm groundglass nodule within the right lower lobe with indolent behavior. Due to possible adenocarcinoma, Recommend annual surveilence.
7-10-2019 CT to check lung nodule.
1-10-2020 8mm stable nodule on R Lung, two 6mm new ones on L Lung, a possible lymph node involvement in inter fissule.

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Last edited by Jackie07; 04-20-2013 at 07:25 PM..
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Old 04-21-2013, 02:35 AM   #8
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Re: Scans and update-

Your rads onc sounds like a real douche. Is he covering his own ass? Is he having trouble dealing with all those very sick people every day? Is he a closet sadist? I'd drop him like a hot potato.

We, cancer survivors, live in the NOW. We don't live next year or next month. We live NOW. And we need the best Quality of Life we can get. So when we have a good scan or blood test or whatever, we celebrate. Because today we are good. Today we were given some extra time on this planet, with our loved ones, with the things we still want to do.

It's not just their job to keep us alive, it is also their job to keep us in a good frame of mind. If that means we need some chemicals to help us do that: fine! If we need to get an upbeat report: give it to us! If we are the kind of person who needs to know the worst case scenario: let us know! But a doc needs to find out first what is best for each patient. Not what is best for him or her, not what makes them feel right or ok or in charge.

Your doc fails miserably on the latter part. He needs to be told that and he needs to shape up. You need as many good days as you can possibly get and he is responsible for helping you get those. If you like, you can forward my message to him.

Now for the reality check: Yes, you will probably die from metastatic breast cancer. But before you do, you are going to have an awesome life. You will get more out of your limited number of days than a lot of people who get old, but are not able to get everything they want and need out of life. You will get fewer days, but better days. And for now, the outlook is good and you are heading in the direction of lots of good days. Savour them. Enjoy them. And if you need pills to help you do that, get those pills. If venting on this forum helps: go ahead! Whine! Complain! Vent! That's what we are all here for: to help each other, to make the days count.


Diagnosed age 44, January 2004, 0.7 cm IDC & DCIS. Stage 1, grade 3, ER/PR pos. HER2 pos. clear margins, no nodes. SNB. 35 rads. On Zoladex and Armidex since Dec. 2004. Stopped Zoladex/Arimidex sept 2009 Still taking mistletoe shots (CAM therapy) Doing fine.
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Old 04-21-2013, 09:42 PM   #9
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Re: Scans and update-

Thank you, everyone. You have given me a much needed lift in spirit. Denise, I like the picture of us all on the rollercoaster together. ((hugs)) And Andrea, you always know just the right thing to say as well as bringing such a wealth of information and positive energy.
I so appreciate everyone's prayers and support. I think I will be switching radiation oncologists, because I don't need anyone to bring me down further.
I think this was just a hard few weeks for me. My mother had come by my house a while back, and told me that she was going the next day to make my funeral arrangements, and wanted to know if I wanted to go with her. Something about picking out my coffin that day didn't sound appealing (like it every would). I said, gosh, is that something we have to do right now? Im not in hospice or anything, and she said she didn't want to have to deal with it after I died. I got a bit snippy at that point and said..Well maybe we should go make your funeral plans, as you might get hit by a car on your way home! I know she is dealing with this the best way she can, and I know she has my best interest at heart, but I guess that combined with the things the radiation oncologist told me just started to make me think, hey, maybe Im not being realistic, maybe Im in denial..whatever, and I got depressed as all get out.
Soooo..thank you so much for letting me vent and supporting me. I think I am going to start printing out my favorite parts of all your posts and sticking them to a bulletin board in my room.
Lien..I really like the second paragraph of your post. Thank you.
Sending lots of prayers and positive energy out for all of us...
Diagnosed in October 2011 Stage IV with metastasis to liver.
January 2012 after double mastectomy, started taxotere, carboplatin and herceptin.
December 2012 was diagnosed with five brain mets, and had whole brain radiation.
Around July 2014 two mets in brain, one a residual spot and one new one growing in size. Received Cyberknife on both areas
April 2015 remain NED
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Old 04-22-2013, 12:26 AM   #10
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Re: Scans and update-

I am a Tykerb diva---used it with much success for many years. Ditto Lien in her strong message to you and your doc. I would find a kinder doc who is not so beat down by life. My mom always said "don't write the ending". That was way and long before cancer but her words echo in my mind so often.

Stay present. Get the info. Make your decisions and then keep your eye on the ball, meaning forge ahead. It is so very demanding to find the inner strength needed to walk with cancer. But you can do it because I can do it. And I can do it because of all others who walk ahead of me.

I have been living with mets for 6 years. Stay present. Limit the fear chatter - practice being kind to yourself and keep sharing here. PM me if you'd like Tykerb info and are too pooped to search the site - I will do it for you or call you.

Stay strong!
1996 cancer WTF?! 1.3 cm lumpectomy Er/Pr neg. Her2+ (20nodes NEGATIVE) did CMF + rads. NED.
2002 recurrence. Bilateral mastectomy w/TFL autologous recon. Then ACx2. Skin lymphatic rash. Taxotere w/Herceptin x4. Herceptin/Xeloda. Finally stops spreading.
2003 - Back to surgery, remove skin mets, and will have surgery one week later when pathology can confirm margins.
‘03 latisimus dorsi flap to remove skin mets. CLEAN MARGINS. Continue single agent Herceptin thru 4/04. NED.
‘04 '05 & 06 tiny recurrences - scar line. surgery to cut out. NED each time.
1/2006 Rads again, to scar line. NED.

3/07 Heartbreaking news - mets! lungs.sternum. Try Tykerb/Xeloda. Tykerb/Carbo/Gemzar. Switch Oncs.
12/07 Herceptin.Tykerb. Markers go stable.
2/8/08 gamma knife 13mm stupid brain met.
3/08 Herceptin/tykerb/avastin/zometa.
3/09 brain NED. Lungs STABLE.
4/09 attack sternum (10 daysPHOTONS.5 days ELECTRONS)
9/09 MARKERS normal!
3/10 PET/CT=manubrium intensely metabolically active but stable. NEDhead.
Wash out 5/10 for tdm1 but 6/10 CT STABLE, PET improving. Markers normal. Brain NED. Resume just Herceptin plus ZOMETA
Dec 2010 Brain NED, lungs/sternum stable. markers normal.
MAR 2011 stop Herceptin/allergy! Go back on Tykerb and switch to Xgeva.
May-Aug 2011 Tykerb Herceptin Xgeva.
Sept 2011 Tykerb, Herceptin, Zometa, Avastin.
April 2012 sketchy drug trial in NYC. 6 weeks later I’m NED!
OCT 2012 PET/CT shows a bunch of freakin’ progression. Back to LA and Herceptin.avastin.zometa.
12/20/12 add in PERJETA!
March 2013 – 5 YEARS POST continue HAPZ
APRIL 2013 - 6 yrs stage 4. "FAILED" PETscan on 4/2/13
May 2013: rePetted - improvement in lungs, left adrenal stable, right 6th rib inactive, (must be PERJETA avastin) sternum and L1 fruckin'worsen. Drop zometa. ADD Xgeva. Doc says get rads consultant for L1 and possible biopsy of L1. I say, no thanks, doc. Lets see what xgeva brings to the table first. It's summer.
June-August 2013HAPX Herceptin Avastin Perjeta xgeva.
Sept - now - on chemo hold for calming tummy we hope. Markers stable for 2 months.
Nov 2013 - Herceptin-Perjeta-Avastin-Xgeva (collageneous colitis, which explains tummy probs, added Entocort)
December '13 BRAIN MRI ned in da head.
FEB 2014 PetCT clinical “impression”: 1. newbie nodule - SUV 1.5 right apical nodule, mildly hypermetabolic “suggestive” of worsening neoplastic lesion. 2. moderate worsening of the sternum – SUV 5.6 from 3.8
3. increasing sclerosis & decreasing activity of L1 met “suggests” mild healing. (SUV 9.4 v 12.1 in May ‘13)
4. scattered lung nodules, up to 5mm in size = stable, no increased activity
5. other small scattered sclerotic lesions, one in right iliac and one in thoracic vertebral body similar in appearance to L1 without PET activity and not clearly pathologic
October 2014: hold avastin, continue HPX
Feb 2015 Cancer you lost. NEDHEAD 7 years post gamma zap miracle, 8 years ST4, +19 yrs original diagnosis.
Continue HPX. Adding back Avastin
Nov 2015 pet/ct is mixed result. L1 SUV is worse. Continue Herceptin/avastin/xgeva. Might revisit Perjeta for L1. Meantime going for rads consult for L1
December 2015 - brain stable. Continue Herceptin, Perjeta, Avastin and xgeva.
Jan 2016: 5 days, 20 grays, Rads to L1 and continue on HAPX. I’m trying to "save" TDM1 for next line. Hope the rads work to quiet L1. Sciatic pain extraordinaire :((
Markers drop post rads.
2/24/16 HAP plus X - markers are down
3/23/16 Laminectomy w/coflex implant L4/5. NO MORE SCIATIC PAIN!!! Healing.
APRIL 2016 - 9 YRS MBC
July 2016 - continue HAP plus Xgeva.
DEC 2016 - PETCT: mets to sternum, lungs, L1 still about the same in size and PET activity. Markers not bad. Not making changes if I don't need to. Herceptin/Perjeta/Avastin/Xgeva
December 2017 - Progression - gonna switch it up
FEB 2018 - Kadcyla 3 cycles ---->progression :(
MAY30th - bronchoscopy, w/foundation1 - her2 enriched
Aug 27, 2018 - start clinical trial ZW25
JAN 2019 - ZW25 seems to be keeping me stable
MAY 2019 - progression back on herceptin add xeloda
JUNE 2019 - "6 mos average survival" LMD & CNS new single brain met - one zap during 5 days true beam SBRT to cord met
10/30/19 - stable brain and cord. progression lungs and bones. washing out. applying for ds8201a w nivolumab. hope they take me.
12/27/19 - begin ds8401a w nivolumab. after 2nd cycle nodes melt away. after 3rd cycle chest scan shows Improvement, brain MRI shows improvement, resolved areas & nothing new. switch to plain ENHERTU. after 4th cycle, PETscan shows mostly resolved or improved results. Markers near normal. I'm stunned but grateful.
10/26/20 - June 2021 Tucatinib/xeloda/herceptin - stable ish.
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Old 04-22-2013, 07:36 AM   #11
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Join Date: Feb 2012
Location: Ontario, Canada
Posts: 115
Re: Scans and update-

I'm so glad we all have each other!
KsGal, listen. You are NOT a statistic. Statistics are old, we are in a new age of medicine. Statistics are only going to get better because of US!! My rad onc said that I'm going to live a long time. My MO said 1-2 years. I think they just don't know, and they like to cover their own butts.
I am depressed too. I have a bottle of celexa waiting for me to take. It takes a couple of weeks to kick in, so maybe I should start taking it.
SO - I think we should go with the live in the moment attitude. I know it's hard not to slip in to a funk. Everyday seems to be a struggle.
I was diagnosed Nov. 2011 with stage 3a then Sep 2012 brain met, so we are sort of similar in that sense. I get it.
PM me anytime. Maybe we can talk each other out of a depression.
As for the funeral arrangements. Bypass that one. I'd say. Lets try to focus on life. I had the talk with my husband, and closed that chapter forever.
SO, if this message is making any sense, cuz the steroid is making me loopy, I just want us all to raise our green teas and toast each other for being the best bunch of GD women out there! We are strong, we are there for each other, we are loved by each other, and we are on this crazy roller coaster ride with each other. Cheers to all of you. Hugs, BIG hugs to you KsGal and to all of you reading this. Just think, 2033 is just around the corner. We'll be old pros on this board for future generations to come! (not like that's good for ones to come, but that's reality)
Feb 2013 - NED
Mar 2013 - thought I had progression, watching brain.
April 2013 - GOT MARRIED!!!!
May 2013 - looks like no progression, but necrosis and bigger.
Oct-Dec 2013 - Avastin tx
Nov 2013 - MRI shows necrosis shrinkage!!!!
Jan 2014 - Lepto Mening. disease found
Feb 2014 - WBR
April 2014 - Liver mets found
April 2014 to present - Chemo again, whooohoo. Fun!
July 2014, scans look good.
Stay on Perjetand hercertin.
Nov. 2014 more lepto-mening disease more WBR.
Feb 2015 more lepto-mening disease in spine and neck. More radiation.
Start on TDM1 no more Perjeta stay on herceptin
March 2015 more radiation in my thoracic area, more lepto-meningial disease
April 2015 trying to walk again.
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Old 04-25-2013, 04:22 PM   #12
Senior Member
KsGal's Avatar
Join Date: Dec 2011
Posts: 585
Re: Scans and update-

SoCalGal- Thank you! I might just PM you for a list of things I might need before I start up the Tykerb.
My first bottle arrives via UPS tomorrow, totally paid for by my insurance, so I don't have to worry about copays after all.
dearjilly-I think the funeral arrangements thing caught me totally off guard. I feel like Im at a pretty good level of function..Im just one of those that thinks if everyone around you just accepts you are going to die, you are going to die, and if they think you are going to beat it..well. So I try to limit talks of things like cancer and death and things around me.
Thank you all for the uplifting posts and encouragements. It really does mean everything to me, because although my family is supportive, I don't think anyone truly understands that hasn't been in my situation. Thank you, thank you!
Diagnosed in October 2011 Stage IV with metastasis to liver.
January 2012 after double mastectomy, started taxotere, carboplatin and herceptin.
December 2012 was diagnosed with five brain mets, and had whole brain radiation.
Around July 2014 two mets in brain, one a residual spot and one new one growing in size. Received Cyberknife on both areas
April 2015 remain NED
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Old 04-25-2013, 05:27 PM   #13
Senior Member
Join Date: Sep 2012
Posts: 29
Re: Scans and update-

You may find Tykerb will take care of the brain mets. I don't have brain mets, but I did have a tumor on my sternum even while taking herceptin. Once I was started on tykerb and xeloda, the tumor was gone within two weeks. Hang in there. This may be the drug that works for you. Don't give up and don't let a negative nancy take you down. You are in my prayers.
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Old 04-25-2013, 05:29 PM   #14
Senior Member
Join Date: Sep 2012
Posts: 29
Re: Scans and update-

Also, I have been taking Cymbalta for 9 years and it has been a life saver. Not only does it help with the depression, it also helps with the bone pain from bone mets. If you feel you need an antidepressant, you probably do. Go with it, it's worth feeling better.
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Old 04-26-2013, 03:10 PM   #15
Senior Member
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Join Date: Dec 2011
Posts: 585
Re: Scans and update-

Thank you! Im going to "ask my doctor about Cymbalta". I come from a family that's like- Ow, I have a headache. Well, take some Tylenol. Naaaa, it'll be alright. *roll eyes* But really during this cancer ordeal I have become pretty okay with pills. Because it is about quality of life, and its not a good life if you are depressed or in pain.
Im hyping myself up to start the Tykerb Monday. I have no clue why I am so anxious about starting it. I've done taxotere and carboplatin before, both which are much more harsh. Thanks everyone..as always, you have me thanks, my prayers and my love.
Diagnosed in October 2011 Stage IV with metastasis to liver.
January 2012 after double mastectomy, started taxotere, carboplatin and herceptin.
December 2012 was diagnosed with five brain mets, and had whole brain radiation.
Around July 2014 two mets in brain, one a residual spot and one new one growing in size. Received Cyberknife on both areas
April 2015 remain NED
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