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Old 05-08-2016, 02:29 AM   #1
Benk
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Looking for hope

Hi all wondering if anybody can help with some advice my wife ( love of my life and mother to our 3 year old duaghter ) has in last couple of weeks been diagnosed with her2 positive breast cancer that has metastasized with minor lesions on spine and hips we are about to start chemo with herceptin , pertuzumab, Docetaxel with continuing herseptin every 3 weeks post chemo
We don't know what to expect and scared out of our minds , I was hoping there are some long term survivors that can give us hope in regard to herseptin controlling the decease.

Thank in advance for your help sorry if my explanation does not fit technically.

Benk
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Old 05-08-2016, 09:22 AM   #2
Kim in CA
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Re: Looking for hope

Hi Benk,

Please do not despair. I know this is devastating news, and your lives will never be the same, but their is reason to have great hope.

Being her2 + is no longer the terrible diagnosis that it once was. We are now living longer with her2 BC because of the many targeted therapies available to us. Some of the ladies on this board have even achieved complete remission and are no longer on any treatments at all, even though their disease had metastisized.

I was diagnosed in 1997, before Herceptin was available. My cancer metastisized in 2001, and thanks to Herceptin and the other targeted drugs, I'm still here. I'm sure the others will chime in soon. There are lots of amazing metastatic "thrivers" on this board!

Still, I am so sorry that you've received this news. I remember all too well the various stages of grief/anger my family and I went through, but you will get through it. It's a lot for any one assimilate.......

Kim
__________________
Diag. Feb 1997 4.5cm IDC <10%ER+, PR-. 5 out of 36 nodes +. Mastectomy followed by 3 rounds Adriamycin/Cytoxin.


5/1997 Hi Dose Chemo w/ Stem cell rescue. Spent 4 weeks in isolation ward. Then 6 weeks radiation.

9/2001 widespread mets to liver. 8 mos Taxotere/Herceptin brought me almost to NED. Stop Taxotere & add Femara .

11/2002 liver resection to remove spot that turned out to be necrosis. Officially NED!

7/2003 Tumor markers rising add Xeloda Disastrous reaction, 8 days hospital, but tumor markers came back to normal!

June -Dec 2004 UW Vaccine Trial.

7/2005 MRI single 11mm brain met
8/2005 Gamma Knife.

Brain MRI @3 months NED!

2006-2011 brain/body still NED

8/04/11 Taking Herceptin break, will monitor with tumor markers.

6/20/12 Tumor markers begin to rise. CA15-3 is 31.3 and Her2 Serum is at 17.1 Decide to repeat in one month.

7/23/12 CA15-3 now 49.3
Her2 Serum 26.8

8/6/12 Back on Herceptin
CA15-3 now 76
Her2 Serum now 49

11/7/12 Add weekly Taxotere for 4 cycles

2/2013 Stopped Taxotere added Perjeta. MRI shows approx. 50% reduction liver mets. CA15-3 still elevated @ 55. Will continue on just Herceptin & Perjeta.

November 2014 Continuing on Herceptin, Perjeta, and
Femara indefinitely. Guess I'm NED again, but watching those tumor markers carefully!

Dec. 2015 PET scan reveals mass in perirectal area of abdomen.biopsy confirms. Still Her2+, but no longer ER+. Bye bye Femara

Jan 2016 Begin Kadcyla

March 2016 PET scan shows tumor now barely visible, still NED everywhere else.
2016/2017 continue Kadcyla

November 2017 brain MRI reveals small focus of T2 hyperintensity with possible 4mm enhancing nodule. Short term follow up MRI suggested. Stay tuned...
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Old 05-08-2016, 11:48 AM   #3
ariana
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Re: Looking for hope

Kim in Ca,--------Being her2 + is no longer the terrible diagnosis that it once was. We are now living longer with her2 BC because of the many targeted therapies available to us. Some of the ladies on this board have even achieved complete remission and are no longer on any treatments at all, even though their disease had metastisized.

I didn't know remission was even possible. Thanks for the insight.
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Old 05-08-2016, 01:37 PM   #4
Benk
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Re: Looking for hope

Kim ca your journey is truly inspirational thank you your words do give me comfort and hope more than you can imagine.
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Old 05-08-2016, 01:38 PM   #5
Benk
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Re: Looking for hope

Thank you Ariana
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Old 05-08-2016, 02:38 PM   #6
tricia keegan
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Re: Looking for hope

I agree Kim's survivorship is very inspirational and while I was one of the lucky one's that had Herceptin in 2005 as early stage, I've been on this site long enough to know there are many others just like her so please take hope from that and my best wishes to you both.
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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 05-09-2016, 03:41 PM   #7
Colleen
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Re: Looking for hope

@Benk I would ask the doctor about continuing Herceptin and Perjeta both during the taxane phase and post. I did taxotere with herceptin and perjeta for six cycles and achieved NED without surgery or radiation. I still receive H & P every 21 days but it is a walk in the park without the taxane. The targeted therapies for HER2 are quite good and things are moving quickly. Believe she will be ok and live life, don't stop enjoying the things that make you or her smile. Keep pushing, always
__________________
*October 2013 mammogram suspicious lump right breast
*Oct. 2013 Breast MRI reveals 2.5 cm tumor right breast 6-7 nodes positive
*Nov 2, 2013 PET/CT tumor right breast, 6-7 nodes include right axilla and one above clavicle, 3.5 cm lesion on dome of liver
*Nov 4, 2013 meet oncologist: schedule port placement
*Nov 5, 2013 baseline echo 65%
*Nov 13, 2013 start THP six cycles every 21 days
*Nov 20, 2013 blood counts now coming back quickly start neulasta following next treatment, no pain and it worked!
*Jan 19, 2014 syncope, ambulance ride to hospital, cracked a tooth and chipped three, six stitches in chin, CT scan shows brain is ok but am required to follow up with neurologist.
*Jan 28, 2014 PET/CT shows great response to THP
*Jan 28, 2013 echo, all is good 60-65%
*Feb 2014 brain MRI, no missing parts and no extra parts, all clear
*Feb 27, 2014 last treatment with taxotere
*Apr 22, 2014 PET/CT shows complete pathological response to THP amen!
*Apr 22, 2013 echo 60%
*continue vitamin H and P every 21 days until...eternity?
*May 2014 emotional melt down, demand port be removed.
*May 22 2014, biopsy of original tumor rt. breast, no cancer cells in 8 tissue samples, amen
*June 2, 2014 Port removed, happy dance! Just couldn't tolerate the port any longer; it never worked properly and was extremely uncomfortable
*July 24, 2014 echo 60%
*August 28, 2014 PET/CT all clear NED
*Oct 29, 2014 echo 65%
*Feb 4, 2015 PET/CT NED!!!
*Feb 4, 2015 Echo 65-70%
*May 19, 2015 mammogram all clear
*May 19, 2015 Brain MRI all clear!
*August 18, 2015 PET/CT NED!!! amen!
*March 8, 2016 CT w/contrast NED
*March 10, 2016 Echo normal
*June 2016 Echo normal
*September 7, 2016 CT scan w/contrast NED
*September 8, 2016 Echo normal
* still receiving infusions every 21 days of Perjeta and Herceptin with no end in sight......
*March 2017 CT scan NED and echo normal
*May 2017 mammogram all clear!
*November 2017 CT scan NED and echo normal

"Better pass boldly into that other world, in the full glory of some passion, than fade and wither dismally with age."
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Old 05-09-2016, 08:35 PM   #8
Benk
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Re: Looking for hope

Hi Colleen thank you for your message I will take on board your advice, my wife is fearful but we are being positive.
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Old 05-10-2016, 06:16 AM   #9
Colleen
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Lightbulb Re: Looking for hope

@Benk I also kept "moving" thru out treatment. I swam, did yoga, and walked a lot. I was slower but I never stopped these things helped to heal along with a good accupuncturist (she was a god send). I also meditated and used visualization for the cancer to leave my body. My visualization was gentle and loving, no ninja warriors, I used butterflies. During meditation as I took a breath in I envisioned butterflies coming to my body and touching all the places where the cancer was, as I exhaled the butterflies left my body taking the cancer away. I also turned to an alkaline diet and started monitoring my ph first thing in the morning along with my basal body temperature. This combined with the "gold" standard for treating HER2 got me to NED in six short months. Now it's like living with chronic disease, an infusion every 21 days. I always believed I would be fine and that's what your wife needs to do. Yes this diagnosis is scary but keep your chin up and believe.
__________________
*October 2013 mammogram suspicious lump right breast
*Oct. 2013 Breast MRI reveals 2.5 cm tumor right breast 6-7 nodes positive
*Nov 2, 2013 PET/CT tumor right breast, 6-7 nodes include right axilla and one above clavicle, 3.5 cm lesion on dome of liver
*Nov 4, 2013 meet oncologist: schedule port placement
*Nov 5, 2013 baseline echo 65%
*Nov 13, 2013 start THP six cycles every 21 days
*Nov 20, 2013 blood counts now coming back quickly start neulasta following next treatment, no pain and it worked!
*Jan 19, 2014 syncope, ambulance ride to hospital, cracked a tooth and chipped three, six stitches in chin, CT scan shows brain is ok but am required to follow up with neurologist.
*Jan 28, 2014 PET/CT shows great response to THP
*Jan 28, 2013 echo, all is good 60-65%
*Feb 2014 brain MRI, no missing parts and no extra parts, all clear
*Feb 27, 2014 last treatment with taxotere
*Apr 22, 2014 PET/CT shows complete pathological response to THP amen!
*Apr 22, 2013 echo 60%
*continue vitamin H and P every 21 days until...eternity?
*May 2014 emotional melt down, demand port be removed.
*May 22 2014, biopsy of original tumor rt. breast, no cancer cells in 8 tissue samples, amen
*June 2, 2014 Port removed, happy dance! Just couldn't tolerate the port any longer; it never worked properly and was extremely uncomfortable
*July 24, 2014 echo 60%
*August 28, 2014 PET/CT all clear NED
*Oct 29, 2014 echo 65%
*Feb 4, 2015 PET/CT NED!!!
*Feb 4, 2015 Echo 65-70%
*May 19, 2015 mammogram all clear
*May 19, 2015 Brain MRI all clear!
*August 18, 2015 PET/CT NED!!! amen!
*March 8, 2016 CT w/contrast NED
*March 10, 2016 Echo normal
*June 2016 Echo normal
*September 7, 2016 CT scan w/contrast NED
*September 8, 2016 Echo normal
* still receiving infusions every 21 days of Perjeta and Herceptin with no end in sight......
*March 2017 CT scan NED and echo normal
*May 2017 mammogram all clear!
*November 2017 CT scan NED and echo normal

"Better pass boldly into that other world, in the full glory of some passion, than fade and wither dismally with age."
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Old 05-10-2016, 01:59 PM   #10
Benk
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Re: Looking for hope

Hi Colleen we have had exercise recommended and we both enjoy walking so we are going to start doing that more often and swimming , I'm also looking at suitable diets that aid the body to combat the disease. I also read up on the meditation We are close to starting chemo probably next week they are putting in a port in the next two days.
I have to the story's on this site are incredible what yourself and the other women on here have and are going through blow my mind!
I feel even further for you all as I work in an automotive repair industry that battles insurance company's all day but with health care here in Australia the cost is shared between health care insurance and government funding with some gaps paid by ourselves so we don't have to battle that issue.

Thank you so much for your advice the strength of all the ladies and this site have definitely given me hope and more positive outlook I do get moments of fear when some site says the herseptin doesn't work but I can't see that evidence when you read the journeys taken on this page.

Thx

Dx may 2016
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Old 05-10-2016, 03:08 PM   #11
Colleen
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Re: Looking for hope

@Benk Genentech makes herceptin and perjeta. Genentech offers a copay program here in the states so maybe they do the same in Australia. Go to the Genentech website to find information it may help reduce some your "out of pocket" expenses. The copay program has been a blessing for me financially. There are a couple of books I have enjoyed and gave me strength and the ability to believe that I CAN slay the BC beast; Radical Remission and Mind over Medicine, both are written by medical doctors. Godspeed
__________________
*October 2013 mammogram suspicious lump right breast
*Oct. 2013 Breast MRI reveals 2.5 cm tumor right breast 6-7 nodes positive
*Nov 2, 2013 PET/CT tumor right breast, 6-7 nodes include right axilla and one above clavicle, 3.5 cm lesion on dome of liver
*Nov 4, 2013 meet oncologist: schedule port placement
*Nov 5, 2013 baseline echo 65%
*Nov 13, 2013 start THP six cycles every 21 days
*Nov 20, 2013 blood counts now coming back quickly start neulasta following next treatment, no pain and it worked!
*Jan 19, 2014 syncope, ambulance ride to hospital, cracked a tooth and chipped three, six stitches in chin, CT scan shows brain is ok but am required to follow up with neurologist.
*Jan 28, 2014 PET/CT shows great response to THP
*Jan 28, 2013 echo, all is good 60-65%
*Feb 2014 brain MRI, no missing parts and no extra parts, all clear
*Feb 27, 2014 last treatment with taxotere
*Apr 22, 2014 PET/CT shows complete pathological response to THP amen!
*Apr 22, 2013 echo 60%
*continue vitamin H and P every 21 days until...eternity?
*May 2014 emotional melt down, demand port be removed.
*May 22 2014, biopsy of original tumor rt. breast, no cancer cells in 8 tissue samples, amen
*June 2, 2014 Port removed, happy dance! Just couldn't tolerate the port any longer; it never worked properly and was extremely uncomfortable
*July 24, 2014 echo 60%
*August 28, 2014 PET/CT all clear NED
*Oct 29, 2014 echo 65%
*Feb 4, 2015 PET/CT NED!!!
*Feb 4, 2015 Echo 65-70%
*May 19, 2015 mammogram all clear
*May 19, 2015 Brain MRI all clear!
*August 18, 2015 PET/CT NED!!! amen!
*March 8, 2016 CT w/contrast NED
*March 10, 2016 Echo normal
*June 2016 Echo normal
*September 7, 2016 CT scan w/contrast NED
*September 8, 2016 Echo normal
* still receiving infusions every 21 days of Perjeta and Herceptin with no end in sight......
*March 2017 CT scan NED and echo normal
*May 2017 mammogram all clear!
*November 2017 CT scan NED and echo normal

"Better pass boldly into that other world, in the full glory of some passion, than fade and wither dismally with age."
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Old 05-10-2016, 07:31 PM   #12
Mtngrl
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Re: Looking for hope

Dear Benk,

I'm so sorry your beloved has hit this road block. It must be especially scary with a small child.

The best advice I got when I was diagnosed in 2011 is "don't worry about anything until you have to." I have learned to live one day at a time.

I haven't spent much time at "NED," (which means "no evidence of disease") but my cancer has been pretty stable, and I have a good quality of life. My diagnosis was before Perjeta. Adding it has been good for me, though I've also had periods of time on other chemo drugs.

A metastatic cancer diagnosis has a way of focusing the mind, but it's best to focus on living, and on gratitude, and on what's truly important.

The people I've known whose approach to cancer most inspired me had "grit, grace, and gratitude." A hefty dose of denial is also extremely helpful. I never exactly forget I have cancer, but, believe it or not, I'm kind of used to it now, and it doesn't run my life, nor has it ruined it. I'm still here, and still doing well, so cancer and I appear to have found a way to co-exist, at least for now.
__________________
Amy
_____________________________
4/19/11 Diagnosed invasive ductal carcinoma in left breast; 2.3 cm tumor, 1 axillary lymph node, weakly ER+, HER2+++
4/29/11 CT scan shows suspicious lesions on liver and lungs
5/17/11 liver biopsy
5/24/11 liver met confirmed--Stage IV at diagnosis
5/27/11 Begin weekly Taxol & Herceptin for 3 months (standard of care at the time of my DX)
7/18/11 Switch to weekly Abraxane & Herceptin due to Taxol allergy
8/29/11 CT scan shows no new lesions & old lesions shrinking
9/27/11 Finish Abraxane. Start Herceptin every 3 weeks. Begin taking Arimidex
10/17/11--Brain MRI--No Brain mets
12/5/11 PET scan--Almost NED
5/15/12 PET scan shows progression-breast/chest/spine (one vertebra)
5/22/12 Stop taking Arimidex; stay on Herceptin
6/11/12 Started Tykerb and Herceptin on clinical trial (w/no chemo)
9/24/12 CT scan--No new mets. Everything stable.
3/11/13 CT Scan--two small new possible mets and odd looking area in left lung getting larger.
4/2/13--Biopsy of suspicious area in lower left lung. Mets to lung confirmed.
4/30/13 Begin Kadcyla/TDM-1
8/16/13 PET scan "mixed," with some areas of increased uptake, but also some definite improvement, so I'll stay on TDM-1/Kadcyla.
11/11/13 Finally get hormone receptor results from lung biopsy of 4/2/13. My cancer is no longer ER positive.
11/13/13 PET scan mixed results again. We're calling it "stable." Problems breathing on exertion.
2/18/14 PET scan shows a new lesion and newly active lymph node in chest, other progression. Bye bye TDM-1.
2/28/14 Begin Herceptin/Perjeta every 3 weeks.
6/8/14 PET "mixed," with no new lesions, and everything but lower lungs improving. My breathing is better.
8/18/14 PET "mixed" again. Upper lungs & one spine met stable, lower lungs less FDG avid, original tumor more avid, one lymph node in mediastinum more avid.
9/1/14 Begin taking Xeloda one week on, one week off. Will also stay on Herceptin and Perjeta every three weeks.
12/11/14 PET Scan--no new lesions, and everything looks better than it did.
3/20/15 PET Scan--no new lesions, but lower lung lesions larger and a bit more avid.
4/13/15 Increasing Xeloda dose to 10 days on, one week off.
7/1/15 Scan "mixed" again, but suggests continuing progression. Stop Xeloda. Substitute Abraxane every 3 weeks starting 7/13.
10/28/15 PET scan shows dramatic improvement everywhere. All lesions except lower lungs have resolved; lower lungs noticeably improved.
12/18/15 Last Abraxane. Continue on Herceptin and Perjeta alone beginning 1/8/16.
1/27/16 PET scan shows cancer is stable.
5/11/16 PET scan shows uptake in some areas that were resolved on the last two scans.
6/3/16 Begin Kadcyla and Tykerb combination
6/5 - 6/23 Horrible diarrhea from K&T together. Got pneumonia.
7/15/16 Begin Kadcyla only every 3 weeks.
9/6/16 Begin radiation therapy on right lung lesion that caused the pneumonia.
10/3/16 Last of 12 radiation treatments to right lung.
11/4/16 Huffing and puffing, low O2, high heart rate, on tiniest bit of exertion. Diagnosed as radiation pneumonitis. Treated with Prednisone.
11/11/16 PET scan shows significant improvement to radiated part of right lung BUT a bunch of new lung lesions, and the bone met is getting worse.
11/22/16 Begin Eribulin and Herceptin. H every 3 weeks. E two weeks on, one week off.
3/6/17 Scan shows progression in lungs. Bone met a little better.
3/23/17 Lung biopsy. Tumor sampled is ER-, PR+ (5%), HER2+++. Getting Herceptin and Perjeta as a maintenance treatment.
5/31/17 Port placement
6/1/17 Start Navelbine & Tykerb
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Old 05-12-2016, 04:31 AM   #13
Benk
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Re: Looking for hope

Mtngirl thank you for your advice we have been told to take a day at a time and are starting to get our heads around it , I can't help thinking sometimes when I read the journeys women like your self have taken in your list below your comments that we are going to need to be very strong ! Our journey officially begins next week with chemo beginning so again thank you for your comments it definitely helps.
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Old 05-12-2016, 11:31 AM   #14
SoCalGal
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Re: Looking for hope

Worse than chemo, is the anxiety before one's first chemo. Cancer is a mind game, and you are just at the beginning of getting your game on. I wish there was a magic wand to make this path easier, but the best thing is to know people who've been there, done that, and are STILL HERE, so that's US on this board!

My kids were 6 & 8 when I was first diagnosed in the OLDEN days, before herceptin and before a lot of the good drugs to mitigate the chemo side effects. My kids are 26 and 28. Walked my daughter down the aisle last September!! I'm a 20 year surviver, the last 9 (NINE) with metastatic disease. As I love to say, cuck fancer.

Keep us updated...you will get through this and a year from now be able to help other newbies!

If you're looking for hope, you've come to the right place.
__________________
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, to remove skin mets. Not able to get clear margins. So schedule another 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 – cut out, cut out, 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. New onc orders PET/ct & Brain MRI to re-stage me.
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 trial but then 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. (premeds for Herceptin now)
Sept 2011 Tykerb, Herceptin, Zometa, Avastin. (switched back to Zometa, pet/ct bone mets seemed worse on Xgeva)
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 GAMMA ZAPPA continue HAPZ
APRIL 2013 - cancerversary 17 years from original diagnosis. 6 yrs stage 4. [/COLOR][/B]
"FAILED" PETscan on 4/2/13 (WTF)
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 - NEWSFLASH:
6 YEARS POST GAMMA ZAPPA, 7 YEARS STAGE 4 and 18 YEARS FROM ORIGINAL DX! (CUCK FANCER)
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 Herceptin, PERJETA, xgeva. Adding back Avastin to see if lungs will go quiet
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 and due for MRI brain check (check please!).
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: CA15‐3=46.9 CEA=12.3 CA 27.2=79 SCIATIC PAIN DEAL BREAKER.
3/23/16 Laminectomy w/coflex implant L4/5. NO MORE SCIATIC PAIN!!! Healing.
APRIL 2016 - 9 YEARS STAGE FOUR!
(20 years from original diagnosis) July 2016 - continue HAP plus Xgeva. Not NED but not DEaD.
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
2017 I AM COMING FOR YOU!
APRIL 2017 10 YEARS MBC
December 2017 - Progression - gonna switch it up
FEB 2018 - Kadcyla 3 cycles ---->progression :(
MAY30th - bronchoscopy, w/foundation one=her2+ er/pr negative. AUGUST hoping to start clinical trial if they would just get it together and accept me.
CuckFancer!! 11 years MBC.
Aug 27, 2018 - start clinical trial ZW25 aka this better fu*king work
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Old 05-12-2016, 02:55 PM   #15
Mtngrl
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Re: Looking for hope

I don't think I'm all that strong. I have sought help, like you're doing. I've taken inspiration from others who preceded me. I've figured out what I can control and I've let go of all investment in the outcome.

It's not positive thinking, it's radical acceptance. They seem alike, but to me they are polar opposites. I don't try to trick myself into not thinking about the cancer, but I also work to avoid telling myself stories of disaster and catastrophe. I know I have cancer. I don't know yet how that will turn out.

It's not magical thinking. It's nonanxious realism. I know I'm alive now, breathing now, thinking and feeling now. Right this very minute nothing bad is happening. If/when something bad does happen, I'll address that in that moment of now.

The signature serves to remind me what happened when. And it also, hopefully, documents the path I've taken. I'm sure it's hard for you to imagine that a lot of this will become routine and start feeling normal. Everything is so alien and frightening now. Try to stay rested. Literally stop and smell the roses. Breathe. Pray. Sing. Love. Laugh. Those things are always possible, and they are much sweeter in the shadow of a frightening diagnosis.
__________________
Amy
_____________________________
4/19/11 Diagnosed invasive ductal carcinoma in left breast; 2.3 cm tumor, 1 axillary lymph node, weakly ER+, HER2+++
4/29/11 CT scan shows suspicious lesions on liver and lungs
5/17/11 liver biopsy
5/24/11 liver met confirmed--Stage IV at diagnosis
5/27/11 Begin weekly Taxol & Herceptin for 3 months (standard of care at the time of my DX)
7/18/11 Switch to weekly Abraxane & Herceptin due to Taxol allergy
8/29/11 CT scan shows no new lesions & old lesions shrinking
9/27/11 Finish Abraxane. Start Herceptin every 3 weeks. Begin taking Arimidex
10/17/11--Brain MRI--No Brain mets
12/5/11 PET scan--Almost NED
5/15/12 PET scan shows progression-breast/chest/spine (one vertebra)
5/22/12 Stop taking Arimidex; stay on Herceptin
6/11/12 Started Tykerb and Herceptin on clinical trial (w/no chemo)
9/24/12 CT scan--No new mets. Everything stable.
3/11/13 CT Scan--two small new possible mets and odd looking area in left lung getting larger.
4/2/13--Biopsy of suspicious area in lower left lung. Mets to lung confirmed.
4/30/13 Begin Kadcyla/TDM-1
8/16/13 PET scan "mixed," with some areas of increased uptake, but also some definite improvement, so I'll stay on TDM-1/Kadcyla.
11/11/13 Finally get hormone receptor results from lung biopsy of 4/2/13. My cancer is no longer ER positive.
11/13/13 PET scan mixed results again. We're calling it "stable." Problems breathing on exertion.
2/18/14 PET scan shows a new lesion and newly active lymph node in chest, other progression. Bye bye TDM-1.
2/28/14 Begin Herceptin/Perjeta every 3 weeks.
6/8/14 PET "mixed," with no new lesions, and everything but lower lungs improving. My breathing is better.
8/18/14 PET "mixed" again. Upper lungs & one spine met stable, lower lungs less FDG avid, original tumor more avid, one lymph node in mediastinum more avid.
9/1/14 Begin taking Xeloda one week on, one week off. Will also stay on Herceptin and Perjeta every three weeks.
12/11/14 PET Scan--no new lesions, and everything looks better than it did.
3/20/15 PET Scan--no new lesions, but lower lung lesions larger and a bit more avid.
4/13/15 Increasing Xeloda dose to 10 days on, one week off.
7/1/15 Scan "mixed" again, but suggests continuing progression. Stop Xeloda. Substitute Abraxane every 3 weeks starting 7/13.
10/28/15 PET scan shows dramatic improvement everywhere. All lesions except lower lungs have resolved; lower lungs noticeably improved.
12/18/15 Last Abraxane. Continue on Herceptin and Perjeta alone beginning 1/8/16.
1/27/16 PET scan shows cancer is stable.
5/11/16 PET scan shows uptake in some areas that were resolved on the last two scans.
6/3/16 Begin Kadcyla and Tykerb combination
6/5 - 6/23 Horrible diarrhea from K&T together. Got pneumonia.
7/15/16 Begin Kadcyla only every 3 weeks.
9/6/16 Begin radiation therapy on right lung lesion that caused the pneumonia.
10/3/16 Last of 12 radiation treatments to right lung.
11/4/16 Huffing and puffing, low O2, high heart rate, on tiniest bit of exertion. Diagnosed as radiation pneumonitis. Treated with Prednisone.
11/11/16 PET scan shows significant improvement to radiated part of right lung BUT a bunch of new lung lesions, and the bone met is getting worse.
11/22/16 Begin Eribulin and Herceptin. H every 3 weeks. E two weeks on, one week off.
3/6/17 Scan shows progression in lungs. Bone met a little better.
3/23/17 Lung biopsy. Tumor sampled is ER-, PR+ (5%), HER2+++. Getting Herceptin and Perjeta as a maintenance treatment.
5/31/17 Port placement
6/1/17 Start Navelbine & Tykerb
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Old 05-13-2016, 06:28 AM   #16
Whonoze
Senior Member
 
Join Date: Oct 2008
Posts: 41
Re: Looking for hope

Benk: I completely agree with Colleen's "keep moving" advice. Remission from Stage IV is possible. I had Taxotere, Herceptin and Carboplatin in 2007 and have been in remission since completing that course of treatment.
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Old 05-13-2016, 04:24 PM   #17
Benk
Senior Member
 
Join Date: May 2016
Posts: 25
Re: Looking for hope

Thank you all for the advice I'm hoping our story goes in the right direction.
We now have the PORTA cath in and looking at starting treatment next week. We are taking daily walks at this point and I'm researching some bone and muscle building aiding exercise.
I'll keep you posted.
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Old 06-01-2016, 07:00 AM   #18
Benk
Senior Member
 
Join Date: May 2016
Posts: 25
Re: Looking for hope

Hi all we have started chemo are 3 weeks out from first infusion of Docetaxel, her Elgin and perjerta, my wife is going ok but I'm having moments of doubt and weakness. Since I last posted we had pet scan that confirmed minor lung issues on top of bones.
Just a questions for you all the constant pain in my wife's affected breast has stopped and the hard lumps have softened quite a bit, we are taking this as a positive sign , wondering wether I am reading to much into this or it is as positive as we think? Hoping it means other areas will have same result?
Can't thank you all enough for advice it's been greatly helpful.
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Old 06-01-2016, 07:11 AM   #19
ariana
Senior Member
 
Join Date: Jun 2014
Posts: 147
Re: Looking for hope

By my second infusion, I had a lot of tinkling in that breast and I knew that the tumor was being eaten away like the Pac-man game. By the time I had my Mri, it showed that it was gone. When I had my lumpectomy, to make sure, they FOUND two tiny specks and plenty of clean margins and nothing in the lymph nodes.

But it did come back a year and 1/2 after treatment. Don't depend on blood test. Mine were in the normal range. There should be an mri at least once if not every 6 months.
I now have a pet scan every 90 days . Feb. Was good May I faild. I am now on Kadcyle.
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Old 06-01-2016, 07:23 AM   #20
Benk
Senior Member
 
Join Date: May 2016
Posts: 25
Re: Looking for hope

Thanks Ariana the tinkling started whist still hooked up to iv,
I'm a bit concerned a out the metastasis areas.
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