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07-19-2007, 06:27 PM
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#1
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Member
Join Date: Mar 2007
Location: western NC
Posts: 17
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looking for support
Hello there,
I was just looking for words of encouragement. I just had my treatment 5 out of 6 today and I am happy about getting closer to finishing my treatment, but at the same time I am getting scared of recurrence. Everywhere I look I see something about Her2 having "poor prognosis" and high risk of recurrence. I worry about being able to watch my two children grow up. I did talk with a good doctor at Emory, who told me that with the size of my tumor and no lymph node involvement, there was a small chance of recurrence for the next ten years. But I still see some of you on this site with mets after only one or two years. Most of the time I am positive about this, but today I feel down. If there is anyone out there that has uplifting news or stories, please share them with me.
Love and prayers,
Annie
__________________
Diagnosed 02/27/07
Right mastectomy, 7 nodes removed, all negative
tumor size 0.9 cm: ER-/PR-, Her2+++
04/25/07 start 6 rounds of Taxotere/Carboplatin plus Herceptin
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07-19-2007, 06:32 PM
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#2
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Founder - HER2 Support Group
Join Date: Feb 2005
Location: Carlsbad, CA
Posts: 361
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Annie,
I was first diagnosed as stage I in 1990, had a recurrence in 1999, still alive kicking and cancer free in 2007.
And we do have several members with similar stories.
Hugs
Christine
__________________
1990, July DX 1.1cm er-, pr-
Lumpectomy, 5U4, radiation
1999, June mets to chest and brain
HER2 3+++, er- pr-
AC, Taxol, Herceptin, Gamma Knife (3 treatments) WBR
NED July 2001
December 2001 - Founded HER2 Support Group
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07-19-2007, 07:01 PM
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#3
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Guest
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Annie--Although HER2+ has worse prognosis than non-HER2, ER+, other factors come into play as well. I was telling my oncologist on Tuesday one of the sad stories, and he came back and told me three positive ones for every sad one of mine. I gave up and he won! Actually, on Adjuvant, which most doctors use, my risk of dying of my cancer in ten years is 4%, and my risk of dying of something else is 12%.
So, honestly, just because you're HER2+ does not mean you'll have a recurrence. Most women don't.
And just think of Christine's story when you get depressed. I do!
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07-20-2007, 07:57 AM
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#4
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Senior Member
Join Date: Sep 2005
Location: Naples FL
Posts: 1,744
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Hi Annie,
It is so hard not to let this disease get the best of us! The way I look at it is, being Her2+++, there is a treatment (herceptin). Being ER+, there is a treatment (arimidex) and so forth. There are so many things that can happen to us on a daily basis for which there is no treatment. I try to stay positive and grateful for living in an age where there have been so many advances in breast cancer treatment. There are even days now when I forget about it for a few hours at a time! That is progress!!! Hang in there!!!
__________________
 Suzan W.
age 54 at diagnosis
5/05 suspicious mammogram-left breast
5/05 biopsy-invasive lobular carcinoma with LCIS,8mm tumor,stage 1 grade 2, ER+ PR+ Her2+++
6/14/05 bilateral mastectomy, node neg. all scans neg.
Oncotype DX-high risk
8/05-10/05 4 rounds A/C
10/05 -10/06 1 yr. herceptin
arimidex-5 years
2/14/08 started daily self administered injections..FORTEO for severe osteoporosis
7/28/09 BRCA 1 negative BRCA2 POSITIVE
8/17/09 prophylactic salpingo-oophorectomy
10/15/10 last FORTEOinjection
RECLAST infusion(ostoeporosis)
6/14/10 5 year cancerversary!
8/2010-18%increase in bone density!
no further treatments
Oncologist says, "Go do the Happy Dance"
I say,"What a long strange trip its been"
'One day at a time'
6-14-2015. 10 YEAR CANCERVERSARY!
7-16 to 9-16. Extensive (and expensive) dental work done to save teeth. Damage from osteoporosis and chemo and long term bisphosphonate use
6-14-16. 11 YEAR CANCERVERSARY!!
7-20-16 Prolia injection for severe osteoporosis
2 days later, massive hive outbreak. This led to an eventual dx of Chronic Ideopathic Urticaria, an auto-immune disease from HELL.
6-14-17 12 YEAR CANCERVERSARY!!
still suffering from CIU. 4 hospitilizations in the past year
as of today, 10-31-17 in remission from CIU and still, CANCER FREE!!!
6-14-18 13 YEAR CANCERVERSARY!! NED!!
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07-20-2007, 12:17 PM
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#5
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Senior Member
Join Date: Aug 2006
Location: Sheboygan, WI
Posts: 2,582
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Dear Annie,
I heard or read this joke the other day. It went like this............. A woman went to her doctor to hear the pathology report about her breast tumor. The doctor said I have bad news and good news. The bad news is your tumor is her2 positive AND the good news is your tumor is her2 positive. LOL LOL LOL!
Living in the day and age we are living in as far as her2 positive breast cancer goes, we are a bunch of fortunate women! Well, I don't know if fortunate is the right choice of words.  But hey, with herceptin and tykerb things are looking WAYYYYYY better than they were. Your prognosis is really good Annie. Really good.
Your feelings of fear are normal. Most definitely. Especially just finishing up with treatment. It's scary when we let go of that "security blanket" and move into the "let's wait and see world." But once again I say............your prognosis is really good. Try to hang onto that and then go out and live your life and grab a hold of each moment because in reality NONE of us know what's around the bend. Wether you have had cancer or not.
You know, I came to this post to try to encourage someone else and after reading the posts by the others I WAS ENCOURAGED as well. I guess the fears are never far from any of us on any given day.
Sending love and hugs your way,
Mary Jo
__________________
"Be still and know that I am God." Psalm 46:10
Dx. 6/24/05 age 45 Right Breast IDC ER/PR. Neg., - Her2+++ RB Mast. - 7/28/05 - 4 cm. tumor Margins clear - 1 microscopic cell 1 sent. node No Vasucular Invasion 4 DD A/C - 4 DD Taxol & Herceptin 1 full year of Herceptin received every 3 weeks 28 rads prophylactic Mast. 3/2/06
17 Years NED
<>< Romans 8:28
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07-20-2007, 12:28 PM
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#6
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Senior Member
Join Date: Oct 2005
Posts: 3,519
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I am not saying you will, and I pray that you and all "newbies" don't, but if you do have recurrance, it may very well be only once - and you will power through it and whatever treatments are necessary, because that's what we do here. We are the Tykerb Tigers and Herceptin Honeys. And hopefully some day in the foreseeable future, Her2Neu will become Her2Old!
__________________
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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07-20-2007, 02:12 PM
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#7
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Senior Member
Join Date: Apr 2007
Location: LA LA Land
Posts: 1,607
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another opinion
Well, it's really hard to make these decisions and I don't believe there is a wrong one to make.
Here's my two cents:ER/PR negative is not as favorable. There are so many people who stay on herceptin to remain NED for years. If I were in your shoes (hope they are green) I would opt to stay on herceptin a longer time. That's just MY opinion of what I would do going backward 
Sorry to add confusion to your state of mind but I guess the other points are,
1. it's an educated guessing game full of trial and error - there is no real cure for cancer.
2. you can consider yourself cured and live your life as if you are HEALTHY (which is what I did for the past 11 years)
3. if and when you need more chemo, it will be there for you - that's what my uber surgeon told me when I was trying to decide what to do in 2004, after 20 months of herceptin.
Best of luck to you. Don't loose your edge to worry and give up your healthy time to fear. (Easy for me to say, as I sit here worrying and fearful .
--Flori
__________________
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.
Jan 2014: CONTINUING on HAPX…
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
APRIL 2014 - 6 YRS POST GAMMA ZAP, 7 YRS MBC & 18 YEARS FROM ORIGINAL DX!
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
SCIATIC PAIN DEAL BREAKER.
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
APRIL 2017 10 YEARS MBC
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
APRIL 2019 - ONE DOZEN YEARS LIVING METASTATIC
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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07-20-2007, 02:35 PM
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#8
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Senior Member
Join Date: Oct 2005
Posts: 476
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The recurrence is a statistical guessing game, but it sure gets us all worried, almost every day. My decision was not to treat with chemo nor radiation. My onc agreed with my decision, because he saw so many women with side effects which not only caused severe new problems but also changed the quality of life. Even with chemo and radiation, there are plenty of cases that recurrence still occur. I do take everything that could help: femera, curcumin, ganoderma, flaxseed, exercise, calcium (once a week type), and few dietary regimen. So far, I am well and will soon be 2 yr survivor. For Her2+, the peak of recurrence is around 18 month after surgery. I look at the calendar all the time and hope the days go by faster, so that my chance of recurrence will keep going down. You should be a fine survivor candidate.
__________________
Ann
Stage 1 dx Sept 05
ER/PR positive HER2 +++ Grade 3
Invasive carcinoma 1 cm, no node involvement
Mastec Sept 05
Annual scans all negative, Oct 06
Postmenopause. Arimidex only since Sept 06, bone or muscle ache after 3 month
Off Arimidex, change to Femara 1/12-07, ache stopped
Sept 07 all tests negative, pass 2 year mark
Feb 08 continue doing well.
Sep 09 four year NED still on Femara.
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07-20-2007, 02:55 PM
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#9
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Senior Member
Join Date: Jan 2007
Location: Adelaide, South Australia, Australia
Posts: 144
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Hi Annie
I go through a similar cycle of fear about recurrence and I have in pthe past sought - and found - inspiration from the amazing women here as one of my strategies for getting past the fear.
Check out the thread here:
http://her2support.org/vbulletin/showthread.php?t=27218
I think you will find some generous and helpful posts that could help you as well.
Warmest wishes - and looking forward to sharing a long and NED e-future with you!
Belindaxxx
__________________
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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07-21-2007, 09:52 AM
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#10
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Member
Join Date: Mar 2007
Location: western NC
Posts: 17
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Thank you everyone!
What a wonderful resource this support group is! You have all lifted me up.
I think the chemo also gets me depressed because it makes me feel so awful for a few days.
God bless all of you,
Annie
__________________
Diagnosed 02/27/07
Right mastectomy, 7 nodes removed, all negative
tumor size 0.9 cm: ER-/PR-, Her2+++
04/25/07 start 6 rounds of Taxotere/Carboplatin plus Herceptin
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