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Old 11-25-2007, 01:53 AM   #1
hermiracles
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Do not pass Go - do not collect $200 -

go straight to Stage 1V!! Please excuse my sick sense of humour! but I am still in shock! The last time I posted here I think about 2 weeks ago - I was Stage 2 and just about to commence chemo for BC Her2+++.

Since then I have been in hospital with a #neck of femur and hip replacement op at age 52!?? Mets to bone and possibly spine!?? YIKES!! Ive only just had a bilateral mastectomy and a catscan of pelvis, abdo and chest that came back clear... go figure???

Now my Onc tells me I have 18mths to live!!?? I know statistics are just that.. but please God I'd like to try and be around to see my bubbas grow up. Sorry if Im sounding melodramatic or disrespectful... I dont think the pain meds from the hospital are helping my state of mind much at the moment either.

Must go and try and have a nap.
Blessings all
Hermiracles

"The most beautiful people we have known are those who have known defeat, known suffering, known struggle, known loss, and have found their way out of the depths. These persons have an appreciation, a sensitivity, and an understanding of life that fills them with compassion, gentleness, and a deep loving concern. Beautiful people do not just happen." Elizabeth Kubler Ross
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2003 L/DCIS –> LWE: High G./Comedo - 6 nodes clear 6 wks Rx
04/07 2 miracles born ~ very grateful
06/07 Susp areas L/b
09/07 Stage 2 bilat. mastectomy R/ b. clear extens DCIS/IDC Paget’s 8 nodes clear ER(<5%) HER2+++ CT clear
11/07 Portacath - FEC
15/11/07 Stage 4 Emerg op - hip replacemt #NOF bone mets H/Taxotere
12/07 Rx to 'spots' on spine/R/hip/femur 3wkly H
2008 H+T mets to rib/sternum? Aredia CT clear! Cont. H + Aredia 07/08 1 wk Palliative Care - mets to lungs + ?1 to brain
09/08 Stop H complete Epirubicin 1wk PC new brain mets
10/08 2wks WBR 1wk PC 22/10/08 Tykerb/Xeloda 12/08 6 CEREBRAL METS COMPLETELY GONE! Rib mets down to <1cm.
01/09 Tumour markers normal! Rx to L/arm
03/09 LUNGS CLEAR (ALL NODULES GONE!), brain clear, liver clear. Bones stable! ~ THANK YOU GOD
07/09 Repeat CT Scan ~ ALL organs clear apart from bones which remain stable. I walk in gratitude.
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Old 11-25-2007, 02:14 AM   #2
tricia keegan
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Smile

OMG Of course you're in shock and been through so much already! Glad to hear a bit of humour creeping through which is a great sign so keep that atittude going
I don't believe for a moment any Dr can give anyone a time line on life,no one knows and you'll read enough "miracle stories" on here as proof of that. You have a huge range of chemo drugs to choose and of course herceptin so I think it was very foolish of your onc to give you this devastating news so early in your treatment.
I know you'll get lots of advice from people here in a similar situation to you who know far more than I that will give you hope,confidence and determination to face the future and prove your Onc wrong. Your pic of the babies is lovely,really cute and they alone give you everything to fight for and ensure you do beat this.
My very best wishes to you as you begin your treatments and please keep us posted.
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Tricia
Dx July '05 IDC 1.9cm Triple positive 3/9 nodes positive
A/C X 4 ..Taxol/Herceptin x 12 wks then herceptin 1 yr
Rads x 36 ..oophorectomy August '06
Currently taking Arimidex..
June 2011 osteopenia/ zometa x1 yearly- stopped Zometa 2015 as Dexa show normal bone density.
Stopped Arimidex July 2014- Restarted Arimidex 2015 for a further two years on the advice of my Onc.
2014 Normal Dexa scan
2018 Mammo all clear, still NED!
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Old 11-25-2007, 06:26 AM   #3
chicagoetc
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Wishing You Well...

Ouch. That's a lot of news/surgery to handle in such a short period of time. And that's a lot of skipping the normal progression (if there is such a thing as "normal" in this race). I'm sure you already know this, but go slow, cry as you need, recovery from the surgery, live one day at a time but as fully as you can. I suspect your priorities will clarify even more (just the diagnosis of breast cancer in and of itself changes life and priorities, often in a good way).

Looks like you have two youngsters. They need you. Whether it's for eighteen months or eighteen years. I know something about human development. Even infants are at highly formative stages of life. What you do for/with them will affect them for the rest of their lives (not that you need to or should be the only one providing them nurture and love).

I can't imagine how I would respond in your situation, nor how you will respond. But God does. Other folk on this forum do. And I am sure you will learn as each day goes by.

I will pray for you and follow as you keep us up-to-date re your situation. Be good to you.

Melanie
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Diagnosed: 7/13/07 (or 7/7/07)
Surgery: 8/15/07 Modified Radical One Side with Lymph Node Dissection
Pathology Report: ER/PR-, HER2+ with FISH at 8.4 copies, Grade 3, Stage IIIa, 3.2 cm tumor plus 4/19 positive lymph nodes
Portacath: 9/7/07
Chemo: 9/14/07 with AC (every three weeks) for four rounds
Physical Therapy for ROM Loss / "Cording" (but not Lymphodema)
Taxol + Herceptin weekly (started 12/2007 with 8 of 12 Taxol)
Radiation: (28 rads from 3/07 to 4/07)
Reconstruction (silicone implant)
Herceptin done (10/08)
Cognitive Remediation (11/08 - 12/08)
Lymphedema Diagnosed 5/10/10 (almost 3 years post cancer diagnosis)
Lymphedema Rehab 9/10/10 - 11/10/10
Six years NED...7/7/2013!
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Old 11-25-2007, 07:00 AM   #4
jones7676
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Hope

Many people have been stage 4 for over 18 months, check the other posts on this web site. I know it is very hard and you must be in shock. But, they are coming up with new and better treatments all the time. I hope that the treatment regiment they are using for you works wonders and that you have many more years to live.
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Barb

10/03 Radical Mastectomy 3 cm tumor - 1/17 Nodes Stage II B, Her 2 +++ ER-/PR- 11/03 4 AC 4 Taxol 12/05 Stage IV - Lung met , Bone mets - Carbo, Taxotere, Herceptin 9/06 - 2 cm brain tumor 10/06 - Tumor removal surgery - Herceptin Halted 12/06 gamma knife tumor base.1/07 Navelbine/Herceptin 4/07 Rads to R femur 5/07 Stereotactic - new 2 cm brain tumor 4/07 Start Xeloda 5/07 Tykerb added 7/07 Brain MRI clean 10/07 .055 cm brain met found. 12/07 Stereotactic -1 cm brain tumor Start Tykerb 11/07 Abraxane/Herceptin 5/08 Cisplatin, Gemcitabine/Herceptin 6/08 Stereotactic to 1cm 9/08 Stereotactic repeat (growth). 11/08 Pet Scan Good but new tiny met on L lung/dead Brain surgery (no cancer cells found/scar tissue) 1/09 Chemo restarted 2/09 Pet Scan Bad - R larger very active/active L active lymph nodes both sides of chest MRI- mets slight increase 2/09 Start Doxil/Tykerb Treatment
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Old 11-25-2007, 08:05 AM   #5
lilyecuadorian
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Dear Hermiracles ...I think that herceptin and taxotere ....will clear up all your mets (how about add carboplatin it did clear me, that combo is really good)
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Lily
Diag April/06 5 months after give birth my son Max
stage IV mets on liver (5 tumors) 38 year old,
her2+++ and ER+PR+ from32 nodes 4 positives
mastectomy right breast chemo before surgery herceptin/carboplatin/taxotere ,clear and surgery have radiation 20, `& then herceptin and tamoxifen
NED until Aug/07 body only then 'n June 04-06-07 .1 lesion of 1.6 cm on cerebellum ...novalis ,open sugery
5m.m brain met again novalis, 4mm.In the liver. Waiting 2 months now 3 tumors enroll on T-MCC trial start first infusion Nov 5/07 at Dec 17 scan show one tumor despair the 2nd and 3th diminish Doc said great results until March/08 ct scan show progression
03-05-08 start tykerb & xeloda
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Old 11-25-2007, 11:47 AM   #6
dhealey
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Never give up hope. Those beautiful babies are your reason to keep on fighting with all you've got! Praying for the magical combo to bring you to NED!
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Debbie in North Carolina
Diag 10/2006-high grade invasive ductal carcinoma- mastectomy L breast
2.5 cm tumor ER/PR pos-Her2+++
4 rounds A/C, 4 rounds Taxol
Herceptin every 3 weeks until Jan. 2008
6/18/07 prophylatic mastectomy R breast
8/2007 started aromasin/stopped arimidex (side effects)
12/07 stopped aromasin due to side effects (now what?)
Finished herceptin 1/8/08
started tamoxifen for 2 years then will switch to femera
allergic to tamoxifen started femera 4/2008
June 20, 2008 portacath removed
Learnig to live life to the fullest!
Stopped Femera due to side effects
July 28, 2008 start trial for breast cancer vaccine
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Old 11-25-2007, 12:10 PM   #7
hutchibk
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My thoughts and prayers are with you. What overwhelming news to get, all so quickly. There are so many avenues to knock this stuff back. You just have to be sure you work to get you body as healthy as you can so that you can tolerate everything they will need to throw at you. I personally believe that there are at least 25 stages... that's what works for me!
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Brenda

NOV 2012 - 9 yr anniversary
JULY 2012 - 7 yr anniversary stage IV (of 50...)

Nov'03~ dX stage 2B
Dec'03~
Rt side mastectomy, Her2+, ER/PR+, 10 nodes out, one node positive
Jan'04~
Taxotere/Adria/Cytoxan x 6, NED, no Rads, Tamox. 1 year, Arimadex 3 mo., NED 14 mo.
Sept'05~
micro mets lungs/chest nodes/underarm node, Switched to Aromasin, T/C/H x 7, NED 6 months - Herceptin only
Aug'06~
micro mets chest nodes, & bone spot @ C3 neck, Added Taxol to Herceptin
Feb'07~ Genetic testing, BRCA 1&2 neg

Apr'07~
MRI - two 9mm brain mets & 5 punctates, new left chest met, & small increase of bone spot C3 neck, Stopped Aromasin
May'07~
Started Tykerb/Xeloda, no WBR for now
June'07~
MRI - stable brain mets, no new mets, 9mm spots less enhanced, CA15.3 down 45.5 to 9.3 in 10 wks, Ty/Xel working magic!
Aug'07~
MRI - brain mets shrunk half, NO NEW BRAIN METS!!, TMs stable @ 9.2
Oct'07~
PET/CT & MRI show NED
Apr'08~
scans still show NED in the head, small bone spot on right iliac crest (rear pelvic bone)
Sept'08~
MRI shows activity in brain mets, completed 5 fractions/5 consecutive days of IMRT to zap the pesky buggers
Oct'08~
dropped Xeloda, switched to tri-weekly Herceptin in combo with Tykerb, extend to tri-monthly Zometa infusion
Dec'08~
Brain MRI- 4 spots reduced to punctate size, large spot shrunk by 3mm, CT of torso clear/pelvis spot stable
June'09~
new 3-4mm left cerrebellar spot zapped with IMRT targeted rads
Sept'09~
new 6mm & 1 cm spots in pituitary/optic chiasm area. Rx= 25 days of 3D conformal fractionated targeted IMRT to the tumors.
Oct'09~
25 days of low dose 3D conformal fractionated targeted IMRT to the bone mets spot on rt. iliac crest that have been watching for 2 years. Added daily Aromasin back into treatment regimen.
Apr'10~ Brain MRI clear! But, see new small spot on adrenal gland. Change from Aromasin back to Tamoxifen.
June'10~ Tumor markers (CA15.3) dropped from 37 to 23 after one month on Tamoxifen. Continue to monitor adrenal gland spot. Remain on Tykerb/Herceptin/Tamoxifen.
Nov'10~ Radiate positive mediastinal node that was pressing on recurrent laryngeal nerve, causing paralyzed larynx and a funny voice.
Jan'11~ MRI shows possible activity or perhaps just scar tissue/necrotic increase on 3 previously treated brain spots and a pituitary spot. 5 days of IMRT on 4 spots.
Feb'11~ Enrolled in T-DM1 EAP in Denver, first treatment March 25, 2011.
Mar'11~ Finally started T-DM1 EAP in Denver at Rocky Mountain Cancer Center/Rose on Mar. 25... hallelujah.

"I would rather be anecdotally alive than statistically dead."
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Old 11-25-2007, 12:50 PM   #8
fauxgypsy
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Second opinions and third!!!! This seems to be a radical opinion and and I think he/she is premature to be predicting your death. It looks like you have just started on the herceptin recently and there are a lot of other cancer treatments available. You hang in there and keep looking. Stage four is not a death sentence and 18 months is based on old statitstics, anyway. And you are right, pain meds do muddy your thoughts. Keep on with the treatments and look for options when your head clears. I cannot imagine a doctor scheduling major surgery while you are just beginning treatment. Please, please get second opinions.

Leslie
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In the world of destiny, there are no statistics.
Jan. 26- mammogram and ultrasound- suspicious lump
Mid-February- lumpectomy, infiltrating ductal carcinoma ~4.5 cm and a 1 cm DCIS, did not get clear margins, did not check lymph nodes
ER+/PR+, her2 +++, nuclear grade 3 of 3
February 20-PET scan showed something on liver. No biopsy.
March- Started carboplatin, herceptin, taxol on a four week cycle
May 3- Pet scan, with intent to do a biopsy, found nothing, liver or breast- no biopsy because there is nothing to biopsy
June 21- new onc, very concerned that there had been no biopsy,
June 18th-CAT scan, bone scan-negative
August 7th - Brain MRI-negative
August 9th- mastectomy, all pathology negative
January 2008 still NED! New oncologist -herceptin for full year after chemo- until July, and tamoxifen---negative scans since May '07
July 2008-Finished Herceptin!
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Old 11-25-2007, 12:52 PM   #9
Andrea Barnett Budin
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Exclamation

When I metastasized 3 yrs after initial dx, it was '98. I was 52 yrs old, post menopausal, w/4th stage invasive lobular carcinoma, including 2 lymph nodes, HER2+ 80%, w/multiple tumors throughout my liver. I went into total shock. I read that I had less than a 15% chance of surviving 5 yrs. I tossed that bk. I decided that somehow I WOULD BE AMONG THE LITTLE GROUP OF SURVIVORS. And I wouldn't stop at 5 yrs. So Hermiracles -- just wrap your mind around the fact that you are going to do the chemo, meditate, use guided imagery, maybe boost your immune system and heart w/supplements and roll your sleeves up. You need to let the scary thoughts through while you hold on to your sense of humor. You need to experience all the fear that what you are facing entails and go forward ANYWAY!! I believe that once you talk about, and write about, your feelings, you can purge yourself of the unwanted, negative, agonizing thoughts and emotions and move toward taking control of your thoughts! Beginning the healing process. I have learned to troll throughout the day to hear what my mental chatter is. To confront it. Experience and ventilate it all, through talking and writing. Then expel all the crap in your head and reboot! Consciously choose the words you truly wish to circulate in your head all day. Know that they are commands being sent from your mind to your body. And know that your body will respond. It hears everything you say, or whisper. AND THAT IS A GOOD THING. Because it can EMPOWER you to go where you want to go. I have read many studies and reports that substantiate this awesome reality. Some are not open to its expanded awareness. I pray you are open. Yes, this is very hard work. It is a 24/7 job, but the rewards you will reap are so very worth all your toil. And, it will get easier, as with all things in Life, practice makes perfect...

Use every discipline you have access to, including the chemo, AND 2ND AND 3RD OPINIONS!! I have to say I would *not* want a doc who thinks I'm a lost cause, w/less than 18 mnths to live.

Richard Bloch (of H & R Bloch) was told 30+ yrs ago that he had mnths to live. He had lung ca, which is way harder to control than bc, and was especially not a good place to be 3 decades ago. They've come a long way since then. Richard wrote a book which I have read. He went on heavy duty chemo for a full year, meditated, used guided imagery, read bks to feed his Soul, used the love of his wife Annette for him and his for her -- and 25 yrs later was still going strong. He programmed his thinking. He defied the odds and the doctor's advice to put his affairs in order. He declined to go. He used every fiber of his being to reach for what he wanted. AND SO CAN YOU!! I believe that with all my heart. Richard wrote that IF ONE PERSON CAN DO IT, SO CAN YOU. I will never forget his words.

I want to jump into cyberspace and put my arms around you and look you in the eye (so you can see my passion) and say these words to you in person. Please keep posting Hermiracles. Love your husband and those adorable babies and feel the joy and harmony of Life with each day. This is all so new for you, coming so darn fast, I don't know if you've caught your breath yet. Be patient w/yourself. But please do move to OPINIONS 2 AND 3!!! You need more input. And better attitude from your oncs! Shame on that poor discouraged and discouraging Soul of a doc. Let him take his 18 mnths and go for a hike...

Move over here, honey -- into the Light. Go deep within yourself -- right to your center, your core. That is your Essence. Your Spirit. You will recognize it when you acknowledge it and merge with it. It is a fragment of the energy of your divine Source, and it is the True You. My understanding is God can't be everytwhere so He put a bit of Himself into each of us, full of wisdom and guidance, if we learn to tap into it. Listen to your Inner Voice! It wants what you want. It is there to nurture you and lead you. Once you connect w/that force you become mightily empowered. You are a Soul with a mind and a body. This is how I have come to see pp since bc. I have read and studied and adopted this belief with all my heart. It is unshakable. I can see you. You are radiant, still glowing from the birth of your miracle babies. We are each meant to learn to take control of our lives, stop being victimized by our sour, dour thoughts and to edit our internal dialogue.

Your body has been through so much. So much dysfunction (bc, hips, pregnancy and birth). Hormones racing and raging through it all. But you can still get yourself together and enjoy decades to come, with LOVE, joy, laughter, an open heart and gratitude for your many blessings. All these are full of healing power! BELIEVE in yourself and your ability to do this. To help yourself heal. You can do this. Let faith and certainty propel you. Make your Intention clear and resolute. Focus all your energy on your vivid Expectation, as Richard did. As I do. As so many survivors do. See your victory. Feel it. Own it. As Olympic gold medalists and winning teams do. Live KNOWING you are calling your desired destiny to you.

I am sending you all the strength and courage I can muster, along with my love,
Andi

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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 11-25-2007, 04:36 PM   #10
swanky
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Hermiracles - what cute little ones! I just want to say the same thing the other ladies have touched on. First, your doctor has no way on knowing how long you have left, you have tons of tx options to go thru before he can throw up his hands and give up. Kick him in the ass for me and then go find a new onc. Secondly, get genetic testing done, if you are BRCA 1 or 2 positive you will be eligible for the PARP clinical trial. In fact there are so many clinical trials out there that are adding even more tx options...lace up those cancer ass kicking boots and ring the bell. Ding. Ding. Fight is on.

Hugs,
Leea
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Age 33 at dx - 9/15/06
L breast, Invasive solid DC w/ extensive DCIS, Grade 3, ER/PR negative/ HER2 neu positive (barely)
-AC DD, taxotere, taxol w/ herceptin
-Bi lat 1/18/07, multiple foci of IDC admixed with DCIS, IDC varied from 0.1, 0.5, and up to 1.6 cm, 1/19 + nodes
Expanders in place
Pregnant when dx
Mom to 4 beautiful kiddos (boys: 5 and 14 mos, girls: 17 and 3)

Recurrence in neck lymph node and 8mm spot in L breast above expander, herceptin stopped
BRCA 1 positive
Clinical trial since 7/23/07 (PARP INHIBITOR)-NED for 9 months, supraclavicle node popped back up,..so we cut it out! Full neck dissection - only 1 positive node ER/PR negative and now HER2 negative
Currently on Xeloda and NED
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Old 11-25-2007, 06:09 PM   #11
Sheila
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Hermiracles
I could not have said it better than Leea.....what Dr gives a time line???? Time to look elsewhere, where they can look at other options...you have many, and 2 beautiful miracles to be here for.
Sending prayers....the answers will come!
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is fighting some kind of battle."



Hugs & Blessings
Sheila
Diagnosed at age 49.99999 2/21/2002 via Mammography (Calcifications)
Core Biopsy 2/22/02
L. Mastectomy 2/25/2002
Stage 1, 0.7cm IDC, Node Neg from 19 nodes Her2+++ ER PR Neg
6/2003 Reconstruction W/ Tissue Expander, Silicone Implant
9/2003 Stage IV with Mets to Supraclavicular nodes
9/2003 Began Herceptin every 3 weeks
3/2006 Xeloda 2500mg/Herceptin for recurrence to neck nodes
3/2007 Added back the Xeloda with Herceptin for continued mets to nodes
5/2007 Taken Off Xeloda, no longer working
6/14/07 Taxol/Herceptin/Avastin
3/26 - 5/28/08 Taxol Holiday Whopeeeeeeeee
5/29 2008 Back on Taxol w Herceptin q 2 weeks
4/2009 Progression on Taxol & Paralyzed L Vocal Cord from Nodes Pressing on Nerve
5/2009 Begin Rx with Navelbine/Herceptin
11/09 Progression on Navelbine
Fought for and started Tykerb/Herceptin...nodes are melting!!!!!
2/2010 Back to Avastin/Herceptin
5/2010 Switched to Metronomic Chemo with Herceptin...Cytoxan and Methotrexate
Pericardial Window Surgery to Drain Pericardial Effusion
7/2010 Back to walking a mile a day...YEAH!!!!
9/2010 Nodes are back with a vengence in neck
Qualified for TDM-1 EAP
10/6/10 Begin my miracle drug, TDM-1
Mixed response, shrinking internal nodes, progression skin mets after 3 treatments
12/6/10 Started Halaven (Eribulen) /Herceptin excellent results in 2 treatments
2/2011 I CELEBRATE my 9 YEAR MARK!!!!!!!!!!!!!
7/5/11 begin Gemzar /Herceptin for node progression
2/8/2012 Gemzar stopped, Continue Herceptin
2/20/2012 Begin Tomo Radiation to Neck Nodes
2/21/2012 I CELEBRATE 10 YEARS
5/12/2012 BeganTaxotere/ Herceptin is my next miracle for new node progression
6/28/12 Stopped Taxotere due to pregression, Started Perjeta/Herceptin
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Old 11-26-2007, 12:33 AM   #12
Jean
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Thumbs up My oh my...

Dear hermiracles,
First of all, what a double blessing - your babies are beautiful!
I am sorry that you have been given such drastic news, but I think
- your dr. is way too negative...
Very important to get additonal opinions, but most of all to work with a dr. that is confident for you and has a positive attitude. Attitude is so important on everyone's part. You will be starting herceptin and herceptin has changed the stats for many HER 2 woman.

As you get familiar with the board you will see that there are many woman who are stage IV and long time survivors. Once you start your treatment
you will then be fighting back this devil of a disease.

Please let us know how your are as you enter the road to recovery !

Blessings,
jean
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Stage 1, Grade 1, 3/30/05
Lumpectomy 4/15/05 - 6MM IDC
Node Neg. (Sentinel node)
ER+ 90% / PR-, Her2+++ by FISH
Ki-67 40%
Arimidex 5/05
Radiation 32 trt, 5/30/05
Oncotype DX test 4/17/06, 31% high risk
TOPO 11 neg. 4/06
Stopped Arimidex 5/06
TCH 5/06, 6 treatments
Herceptin 5/06 - for 1 yr.
9/06 Completed chemo
Started Femara Sept. 2006
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Old 11-26-2007, 06:43 AM   #13
madubois63
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I will repeat some of the information already offered because it is good advice! Your doctor is NOT God! He/she can not tell you when you are going to die. The stats are old. The stats the docs are using are based on information that is 5 years old. People like me and you are making the new statistics for people five years down the line. Although I do not believe the doc should offer a timeline, I believe that your doc forgot to tell you something - You have 18 months to live "IF YOU DO NOT TAKE TREATMENTS." I highly recommend getting a second or third opinion! Stage IV is not a death sentence!!! I was originally diagnosed as stage IV, and that was almost 8 years ago. My kids were 10 and 8 when this all started. My son is in his first year of college, and my daughter is now searching colleges. I had moments when I didn't believe I'd make it this far, but I quickly got those thoughts out of my mind. I know you are in shock right now, but please don't let it overwhelm you. Learn as much as you can about your situation and remember you hired the doctor. You are the boss. Do not let anyone tell you what to do. The doctor should offer advice and you should make decisions TOGETHER. This is your life. Get copies of all reports/pathology so that you have them in you possession when you visit other doctors and so that you can read and better understand your diagnosis. Keep posting. There are many here that have good advice to offer!!
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Maryann
Stage IV Inflammatory BC 1/00
Mod Rad Mastectomy 24nod/5+
Adriomycin Cytoxin Taxol
Tamoxifen 4 1/2 yrs
Radiation - 32 x
Metastatic BC lung/liver 10/04
thorocentesis 2x - pleurodesis
Herceptin Taxatiere Carbo
Femera/Lupron
BC NED 4/05
chemo induced Acute Myeloid Leukemia 5/06
Induction/consolidation chemo
bone marrow transplant - 11/3/06
Severe Host vs Graft Disease of liver
BC mets to lung 11/07
Fasoladex Herceptin Zometa Xeloda
GVHD/Iron overload to liver
Avascular Necrosis/morphine pump 10/10
metastatic brain tumor
steriotactic radiosurgery
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Old 11-26-2007, 11:31 AM   #14
hermiracles
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Thank You!

Dear friends - sisters! Thank you so much for your kind - and informative! - responses. I really appreciate it - each and everyone of your responses.

Not doing too much - still in some pain post op - and trying to process all this new info about where I am at. I've been reading here everyday - just trying to take it all in - as much as I can handle. Doing the best I can to look after our bubbas ~ gorgeous eh? ~ with hubby's help ~ he's a good daddy daddy.

And I am tired - sorry I can't post much - but I do read. Hopefully starting Herceptin this Thursday.

Blessings all
Hermiracles
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2003 L/DCIS –> LWE: High G./Comedo - 6 nodes clear 6 wks Rx
04/07 2 miracles born ~ very grateful
06/07 Susp areas L/b
09/07 Stage 2 bilat. mastectomy R/ b. clear extens DCIS/IDC Paget’s 8 nodes clear ER(<5%) HER2+++ CT clear
11/07 Portacath - FEC
15/11/07 Stage 4 Emerg op - hip replacemt #NOF bone mets H/Taxotere
12/07 Rx to 'spots' on spine/R/hip/femur 3wkly H
2008 H+T mets to rib/sternum? Aredia CT clear! Cont. H + Aredia 07/08 1 wk Palliative Care - mets to lungs + ?1 to brain
09/08 Stop H complete Epirubicin 1wk PC new brain mets
10/08 2wks WBR 1wk PC 22/10/08 Tykerb/Xeloda 12/08 6 CEREBRAL METS COMPLETELY GONE! Rib mets down to <1cm.
01/09 Tumour markers normal! Rx to L/arm
03/09 LUNGS CLEAR (ALL NODULES GONE!), brain clear, liver clear. Bones stable! ~ THANK YOU GOD
07/09 Repeat CT Scan ~ ALL organs clear apart from bones which remain stable. I walk in gratitude.
***************
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Old 11-26-2007, 12:07 PM   #15
Believe51
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Location: RHODE ISLAND (Ed getting me a latte on 2nd Cancerversary Cruise 2008) 'BELIEVE': To accept as true or real, To have faith in, To presume ALWAYS BELIEVE
Posts: 2,999
Smile My Best Advice In A Nutshell....

Never let anyone give you a 'Death-Sentence', no one knows for sure. There are statistics and they are just that, STATISTICS. The law of averages says that there are exceptions to the rules. Now if you said this to me 4-5 years ago I may have believed the doctor, but not today Sweetness. As a matter of fact, more women and men are living with stage IV Breast Cancer and are getting treated like a cronic disease. Keep the faith and remember Dear Friend, BELIEVE!!>>Believe51

PS: Not to mention that I have seen too many miracles in my life not to believe....and look at your name.....hermiracle!!!
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9/7/06Husband 50yrs=StageIV IBC/HER2+,BoneMets10/06TaxotereX10,'H'1X wk,Zometa,Tamoxifen4/12/07Last Tax5/18/07Pet=Rapid Cell Activity,No Organ Mets,Lytic Lesions,Degeneration,Some Bone Repair5/07ChemoFail6/01/07Pleural Thoracentisis=Effusions,NoMalignantCells6/19/07+7/2/07DFCI
6/25/07BrainMRI=BrainMets,Many<9mm7/10/07WBR/PelvisRad37.5Gx15&Nutritionist8/19/07T/X9/20/07BrainMRI=2<2mm10/6/07Pet=BoneProgression
10/24/07ChemoFail11/9/07A/Cx10,EndTam12/7/07Faslodex12/10/07Muga7512/13/07BlasticLesions1/7/08BrainMRI=Clear4/1/08Pet=BoneImprovement,
NoProgression,Stable4/7/08BrainPerfect5/16/08Last A/C8/26/08BrainMets=10(<9mm)9/10/08Gamma10/30/08Met=5mm12/19/08Gamma5mets5
12/22/08SpinalMets1/14/09SpinalRads2/17/09BrainMRI=NoNewMets4/20/09BoneScan5/14/09Ixempra6/1/09BrainMRI=NumerousMets6/24/09DFCIw/DrBurstein6/26/09Continue
Ixempra/Faslodex/Zometa~TM now lower7/17/09Stop Ixempra By Choice9/21/09HOSPICE10/16/09Earned His Deserved Wings And Halo=37 Month Fight w/Stage 4 IBC, Her2+++,My Hero!!
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Old 11-26-2007, 10:53 PM   #16
Lolly
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Do not pay any attention to your onc's dire predictions!!!! I was diagnosed Stage IV in 2001, 6 months after finishing surgery/chemo/rads for Stage III, and I'm still very much alive and kicking. We've kept my disease very well contained with a combo of Herceptin and chemo cocktails, so I very much have what is considered a manageable, chronic disease at this point.
Every one's disease is unique to their system, and no one can predict how you will respond to Herceptin, and of course there's now Tykerb also, and in clinical trials many new options for Her2+ cancer. Do not despair.

<3 Lolly
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Sept.'99 - Dx.Stage IIIB, IDC ER/PR-, HER2+++ by IHC, confirmed '04 by FISH. Left MRM, AC x's 4, Taxol x's 4, 33 Rads, finishing Tx May 2000. Jan.'01 - local/regional recurrence, Stage IV. Herceptin/Navelbine weekly till NED August 2001, then maintenance Herceptin. Right Mast. April 2002. Local/Regional recurrence April '04, Herceptin plus/minus chemo until May '07. Gemzar added from Feb.'07-April '07; Tykerb/Abraxane until August '07, back on Herceptin plus Taxotere and Xeloda Sept. '07. Stopped T/X Nov. '07, stopped Herceptin Dec. '07, started Avastin/Taxol/Carboplatin Dec. '07. Progression in chest skin, stopped TAC March '03, started radiation.

Herceptin has served as the "Backbone" of my treatment strategy for over 6 years, giving me great quality of life. In 2005, I was privileged to participate in the University of Washington/Seattle HER2 Vaccine Trial.
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Old 11-27-2007, 01:45 AM   #17
sarah
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Find another doctor.
Also see what happens after you take taxotere (maybe it should be Abraxane?) and above all, Herceptin. You'll prove them wrong. You must be so upset, I hope you have good support around you. watch funny movies and tv programs and laugh a lot. so many on this site have proven the stats wrong, so will you. ask directly the longtime survivors what has worked for them but i truly think herceptin is a miracle drug.
I send lots of love and lots of hugs,
sarah
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Old 11-27-2007, 03:36 AM   #18
Belinda
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Hermiracles - this is all so hard. You will beat your onc's stats. Deep breathing - try and get rest, keep nourished and hydrated - simple simple things to get you through while you get yourself through this stage. It will be okay - it has to be. Will pm you an aussie suggestion for support as well. Bx
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Belinda
  • Diagnosed 3 Jan 2007, Stage IIb, Mastectomy and axillary clearance 10 Jan 07, 6 of 19 nodes affected, multi-focal cancer, HER2 positive. Second mastectomy (prophylactic). Chemo - AC 3 months, Taxol 3 months - then radiation 5 weeks.
  • Aug 2011 - Diagnosed with Stage IV mets to lung, sternum and 12 or so thoracic nodes - Rads to Sternum, then weekly abraxane and herceptin for 12 weeks.
  • May 2012- good scans - all nodes still about normal size, hole in sternum repairing, lung tumour 'obliterated'.
    Ongoing herceptin every 3 weeks. Bloods still all good! Life good!
  • March 2013 - recurrence - tumours in lungs and mediastinum (coughing up blood) - immediate radiation treatment to right lung and mediastinum, still on Herceptin, and 3 months of Vinoralbine - stable for a little while!
  • Coughing and breathlessness started again September 2013, treated as radiation-induced fibrosis (which can be seen on scans - albeit stable). ie puffers, steroids
  • January 2014 - cough becomes bloody again, scans show big mediastinal tumour wrapped around and choking the life out of my right main bronchus, radiation deemed off limits as my lungs are hypersensitive to radiation (measured by existing damage from 2013) .....................- ie I am in the 5% of people likely to suffer severe radiation damage to the lungs that they warn you about before starting treatment! (so special! :) )
  • Started chemo Feb 2014 - continuing Herceptin (continuous since Aug 2011), with Carboplatin and Gemcitabine. Discontinued Gemcitabine because of se's. Starting cycle 5 Herc/Carbo 5 May 2014.
  • Meantime.....coughing and breathlessness increased to SCARY levels with racing heartbeat that won't slow down, breath that won't come back, even just walking to the bathroom or up 3 or 4 steps.
  • ICU from May 5 2014, collapsed right lung due to tumour, small pulmonary embolism (left), tumours growing in mediastinum left and right, dvt lower right leg
  • Plan seems to be bronchoscope next week to see if tumour can be lasered and stent inserted in right bronchus to reopen air access to lower parts of right lung. If that is successful might be able to have brachytherapy to worst tumour, otherwise no more options for external radiotherapy.
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Old 11-27-2007, 04:36 AM   #19
michka
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Hermiracles, you were right to post! There are so many wonderful women who are Stage IV who can tell you about their experience. They all fought or are fighting. It sure is difficult but many, many are winning. So go in and fight. And when it is hard, look at those two angels and at your man. Take strength from them. And take all the support and love from us. Continue posting and tell us if you got other opinions.
Michka
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08.2006 3 cm IDC Stage 2-3, HER2 3+ ER+90% PR 20%
FEC, Taxol+ Herceptin, Mastectomy, Radiation, Herceptin 1 year followed by Tykerb 1 year,Aromasin /Faslodex

12.2010 Mets to liver,Herceptin+Tykerb
03.2011 Liver resection ER+70% PR-
04.2011 Herceptin+Navelbine+750mg Tykerb
06.2011 Liver ned, Met to sternum. Added Zometa 09.2011 Cyberknife for sternum
11.2011 Pet clear. Stop Navelbine, continuing on Hercpetin+Tykerb+Aromasin
02.2012 Mets to lungs, nodes, liver
04.2012 TDM1, Ned in 07.2012
04.2015 Stop TDM1/Kadcyla, still Ned, liver problems
04.2016 Liver mets. Back on Kadcyla
08.2016 Kadcyla stopped working. mets to liver lungs bones
09.2016 Biopsy to liver. no more HER2, still ER+
09.2016 CMF Afinitor/Aromasin/ Xgeva.Met to eye muscle Cyberknife
01.2017 Gemzar/Carboplatin/ Ibrance/Faslodex then Taxotere
02.2017 30 micro mets to brain breathing getting worse and worse
04.2017 Liquid biopsy/CTC indicates HER2 again. Start Herceptin with Halaven
06.2017 all tumors shrunk 60% . more micro mets to brain (1mm mets) no symptoms
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Old 11-27-2007, 12:39 PM   #20
dede10
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I've been stage 4 since March 2003-when I was dx'd. So, there is ALWAYS hope, and faith. Just keep going and fighting...Don't give up.
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"Life is not measured by the number of breaths we take, but by the moments that take our breath away."

Dum spiro spero
(Latin: while I breathe I hope)
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