HonCode

Go Back   HER2 Support Group Forums > her2group
Register Gallery FAQ Members List Calendar Search Today's Posts Mark Forums Read

Reply
 
Thread Tools Display Modes
Old 06-26-2013, 04:44 PM   #1
ammebarb
Senior Member
 
Join Date: Mar 2009
Posts: 508
Update

Have been on my oral chemo, Sutent for almost two weeks now and had my first lab associated with it today. Thankfully the counts were all within normal range, and I am having next to no side effects. Just a tiny, tiny bit of nausea. Blood pressure was a tad high, so meds that I already take for that may need to be adjusted. Also had an appointment with the retinal specialist last week, and he thinks the eye is faring pretty well. My vision is still 20/25, retina has reattached, pressure within the eye is normal and there is just a tiny bit of bleeding on the retina. Next scary scan is the mri of liver on July 15. This one is done every three months, looking for mets. I try not to panic too far ahead, but as the time gets closer, the more scanxiety is apparent.

Want to thank all of you who are so supportive, and haven't minded my "hijacking" your site. Your prayers and concern have been appreciated more than I can say. You are all in my prayers regularly.

Barb A.
ammebarb is offline   Reply With Quote
Old 06-26-2013, 06:39 PM   #2
KDR
Senior Member
 
KDR's Avatar
 
Join Date: Aug 2010
Location: New York, New York
Posts: 1,580
Re: Update

Barb,
Your good news is good, so stick to that!
Hoping for a good liver MRI, too--
Karen
__________________
World Trade Center Survivor (56th Floor/North Tower): 14 years and still just like yesterday.
Graves Disease, became Euthyroid via Radioactive Iodine, June 2001.
Thyroid Eye Disease. 2003. Decompression surgery in 2009; eyelid lowering surgery in 2010.
Diagnosed: June 2010, liver mets. ER-/PR+10%; HER2+++.
July 2010: Begin Taxol/Herceptin. Eliminate sugar from diet. No surgery or radiation.
January 2011: NED
April 2011: Progression in liver only. Other previous affected areas eradicated. Stop Taxol/Herceptin after 32 infusions.
May 2011: Brain MRI: clear.
May 2011: Begin Tykerb daily, Xeloda twice per day for one week on, one week off, and Herceptin.
November 2011: Progression in liver. All other tumors remain eradicated.
December 2011: BEGIN TRIAL #09-093 Taxol, MCC-DM1 (T-DM1), Perjeta.
Trial requires scans every six weeks, bloodwork and infusions weekly.
Brain MRI: clear.
January 2012: NED. Liver mets, good riddance!
March 2012: NED. Developed SMA (rare blood clot) in intestinal artery and loss of sight in right eye due to optical nerve neuropathy. Resolved when Taxol removed this month.
Continue Protocol of T-DM1 weekly and Perjeta every 3 weeks.
May 2012: NED.
June 2012: Brain MRI: clear.
June-December 2012: NED.
December 2012: TRIAL CONCLUDED; ENTER TRIAL EXTENSION #09-037. CT, Brain MRI, bone scan: clear. NED.
January-March 2013: NED.
June 2013: Brain MRI: clear. CEA upticking; CT shows new met on liver.
July 3, 2013: DISASTER STRIKES during liver ablation: sloppy surgeon cuts intercostal artery and I bleed out, lose 3.5 liters of blood, have major hemothorax, and collapsed lung requiring emergency resuscitative thoracotomy, lung surgery, rib rearrangement and cutting deep connective tissue, transfusion. Ablation incomplete. This life-saving procedure would end up causing me unforgiving pain with every movement I make, permanently, otherwise known as forever.
July 26, 2013: Try Navelbine/Herceptin. Body too weak after surgery and transfusion. Fever. CEA: Normal.
August 16, 2016: second dose Navelbine/Herceptin; CEA: Normal. Will skip doses. Watching and waiting.
September 2013: NED, Herceptin only. CEA: Normal. Started Arimidex.
October-November 2013: NED. Herceptin and Arimidex. CEA, CA125, 15-3: Normal.
December 2013: Something brewing. PET lights up on little spot on liver; CEA upward trend, just outside normal. PET and triphasic liver scan confirm Little Met. Restart Perjeta with Herceptin, stay on Arimidex. Genomic sequencing completed for future treatments, if necessary.
January 2014: Ablate Little Met on the 6th. Happy New Year.
March 2014: Brain MRI: clear. PET/CT reveal liver mets return; new lung mets. This is not funny.
March 2014: BEGIN TRIAL #10-005 A(11)-Temsirolimus plus Neratinib.
April 2014: Genomic testing indicated they could work, they did not. Very strange drug combo for me, felt weird.
April 2014: Started Navelbine and Herceptin. Needed something tried and true, but had significant progression.
June 2014: Doxil and Herceptin.
July 2014: Progression. Got nothing out of it. Brain: NED.
July 2014: Add integrative medical hematologist-oncologist to my team. Begin supplements. These are tumor-busting, immune system boosters. Add glutathione, lysine and taurine IV infusions every three weeks.
July 2014: Begin Gemzar, Herceptin & Perjeta. Happy.
August 2014: ECHO perfect.
January 2015: Begin weekly Vitamin D Analog infusions. 25 mcg. via port.
February 2015: CT: stable.
April 2015: Gem working, but not 100%. Looking into immunotherapy. Finally, treatments for the 21st century!
April 2015: Penn Medicine. Dendritic cell immunotherapy.
KDR is offline   Reply With Quote
Old 06-26-2013, 06:45 PM   #3
caya
Senior Member
 
caya's Avatar
 
Join Date: Jan 2007
Location: Thornhill, Ontario Canada
Posts: 2,320
Re: Update

We are always happy to hear good news, Barb!
Hoping for a good liver MRI report from you too!

all the best
caya
__________________
ER90%+/PR 50%+/HER 2+
1.7 cm and 1.0 cm.
Stage 1, grade 2, Node Negative (16 nodes tested)
MRM Dec.18/06
3 x FEC, 3 x Taxotere
Herceptin - every 3 weeks for a year, finished May 8/08

Tamoxifen - 2 1/2 years
Femara - Jan. 1, 2010 - July 18, 2012
BRCA1/BRCA2 Negative
Dignosed 10/16/06, age 48 , premenopausal
Mild lymphedema diagnosed June 2009 - breast surgeon and lymph. therapist think it's completely reversible - hope so.
Reclast infusion January 2012
Oopherectomy October 2013
15 Years NED!!
caya is offline   Reply With Quote
Old 06-28-2013, 05:36 PM   #4
Laurel
Senior Member
 
Laurel's Avatar
 
Join Date: May 2008
Location: Hershey, PA. Live The Sweet Life!
Posts: 2,005
Re: Update

Hey, Kiddo!

Glad you continue to tolerate the Sutent so well and great news about the healing of the eye. Thanking God for this wonderful turn of events! No one minds your "hijacking" of the site to report to us. You have been a faithful supporter of all of us here. We are happy to reciprocate!
__________________

Smile On!
Laurel


Dx'd w/multifocal DCIS/IDS 3/08
7mm invasive component
Partial mast. 5/08
Stage 1b, ER 80%, PR 90%, HER-2 6.9 on FISH
0/5 nodes
4 AC, 4 TH finished 9/08
Herceptin every 3 weeks. Finished 7/09
Tamoxifen 10/08. Switched to Femara 8/09
Bilat SPM w/reconstruction 10/08
Clinical Trial w/Clondronate 12/08
Stopped Clondronate--too hard on my gizzard!
Switched back to Tamoxifen due to tendon pain from Femara

15 Years NED
I think I just might hang around awhile....

Laurel is offline   Reply With Quote
Old 06-28-2013, 09:33 PM   #5
NEDenise
Senior Member
 
NEDenise's Avatar
 
Join Date: Aug 2011
Location: Philly Suburbs
Posts: 1,709
Re: Update

Honey!
You can't be a hijacker! We love you!!
You're part of our HER2 family... cancer can't change that...
no matter where it rears its ugly head!

So glad to read all your good news!
Don't let scanxiety ruin even one minute of your good news...
or distract you from living and being happy every single day until July 15th!
Remember my friend...Don't worry until there's something to worry about! (which of course...if our prayers are answered...will be NEVER!)

Thanks so much for the update!
Sending prayers and love across the Keystone state!
Denise
NEDenise is offline   Reply With Quote
Old 06-28-2013, 09:37 PM   #6
Emy
Senior Member
 
Join Date: Mar 2012
Location: New York, new york
Posts: 73
Re: Update

Glad to hear good news....relax...your liver MRI will be fine
Eileen
__________________
Eileen's history her2+, er+,pr-, Pk13 mutation
Feb 2017. Herceptin and perjeta ..still ned
Oct 2015 dendritic cell vaccine university of Pennsylvania..6 weekly injections...boosters every 3 months
July 2015 stopped weekly taxol (2.5 years of weekly taxol) still on herceptin perjeta every 3 weeks..still ned
Jun 2014 liver ablation of 1 liver tumor..now ned
Jun 28, 2013 ca15-3 24, cea 3.8... Pet scan showed 2 liver tumors with intensity of 2.7 and 2.5 (11/13 intensity was 8.0)
Jan 2013 herceptin, perjeta every 3weeks, taxol weekly
Jan 2013 MRI showed 3 liver tumors doubled in size ca-15 is 55 end of month 71, cea 7
Dec 2012. Pet scan showed single liver nodule, having MRI liver on dec18th...MRI liver 3tumors... on herceptin, tykerb , fulvestrant ca-15-3 is 42
Sept 2012 ca-15 went from 85 to 35, pet scan showed decrease
May 2012 herceptin every 3 weeks, 1500 tykerb daily (6pills) and fulvestrant every 3 wks
May 2012 herceptin stopped working ca-15 is 85
Sept 2011 started herceptin every 3 wks and femara daily..mets to liver. Bone and lymph nodes
2011 liver mets...all samples from 2001 and 2010 reviewed...her2 positive, fish 5.4. Er positive, prog neg. Stage 4 breast ca...never was lung cancer
2010 16 weeks of chemotherapy for lung cancer (incorrect). Carboplatin and vinalbine...was actually breast ca mets
2010 misdiagnosed with lung cancer ..2cm tumor removed..lower right lobe removed
2001-2006 tamoxifen
2001. Ductal ca. Rt mastectomy
Emy is offline   Reply With Quote
Old 06-29-2013, 08:13 AM   #7
Jackie07
Senior Member
 
Jackie07's Avatar
 
Join Date: Jan 2008
Location: "Love never fails."
Posts: 5,808
Re: Update

Thanks for the update. Can't think of the term right at this minute - but there's a term describing the 'bond' formed between hijackers and the 'victims'...
__________________
Jackie07
http://www.kevinmd.com/blog/2011/06/doctors-letter-patient-newly-diagnosed-cancer.html
http://www.asco.org/ASCOv2/MultiMedi...=114&trackID=2

NICU 4.4 LB
Erythema Nodosum 85
Life-long Central Neurocytoma 4x5x6.5 cm 23 hrs 62090 semi-coma 10 d PT OT ST 30 d
3 Infertility tmts 99 > 3 u. fibroids > Pills
CN 3 GKRS 52301
IDC 1.2 cm Her2 +++ ER 5% R. Lmptmy SLNB+1 71703 6 FEC 33 R Tamoxifen
Recc IIB 2.5 cm Bi-L Mast 61407 2/9 nds PET
6 TCH Cellulitis - Lymphedema - compression sleeve & glove
H w x 4 MUGA 51 D, J 49 M
Diastasis recti
Tamoxifen B. scan
Irrtbl bowel 1'09
Colonoscopy 313
BRCA1 V1247I
hptc hemangioma
Vertigo
GI - > yogurt
hysterectomy/oophorectomy 011410
Exemestane 25 mg tab 102912 ~ 101016 stopped due to r. hip/l.thigh pain after long walk
DEXA 1/13
1-2016 lesions in liver largest 9mm & 1.3 cm onco. says not cancer.
3-11 Appendectomy - visually O.K., a lot of puss. Final path result - not cancer.
Start Vitamin D3 and Calcium supplement (600mg x2)
10-10 Stopped Exemestane due to r. hip/l.thigh pain OKed by Onco 11-08-2016
7-23-2018 9 mm groundglass nodule within the right lower lobe with indolent behavior. Due to possible adenocarcinoma, Recommend annual surveilence.
7-10-2019 CT to check lung nodule.
1-10-2020 8mm stable nodule on R Lung, two 6mm new ones on L Lung, a possible lymph node involvement in inter fissule.
"I WANT TO BE AN OUTRAGEOUS OLD WOMAN WHO NEVER GETS CALLED AN OLD LADY. I WANT TO GET SHARP EDGED & EARTH COLORED, TILL I FADE AWAY FROM PURE JOY." Irene from Tampa

Advocacy is a passion .. not a pastime - Joe
Jackie07 is offline   Reply With Quote
Old 06-29-2013, 09:00 AM   #8
NEDenise
Senior Member
 
NEDenise's Avatar
 
Join Date: Aug 2011
Location: Philly Suburbs
Posts: 1,709
Re: Update

Stockholm Syndrome?
NEDenise is offline   Reply With Quote
Old 06-29-2013, 03:35 PM   #9
ammebarb
Senior Member
 
Join Date: Mar 2009
Posts: 508
Re: Update

Thank you so much, girls! It always does my heart good to hear from you and to feel the loving support. Yep! You've all got Stockholm Syndrome!!

Hugs,
Barb A.
ammebarb is offline   Reply With Quote
Old 06-30-2013, 11:51 PM   #10
Pray
Senior Member
 
Join Date: Apr 2011
Location: Michigan
Posts: 1,173
Re: Update

Great news! Praying mri is great also. Gods blessings to you.
__________________
dx 11/12/09 IDCI
Stage 3a
ER 98% PR 80%
Her2 +3
4/12 nodes
6 rounds TCH
Herceptin 12 months 3weeks
Rad. 30 tx
Tamoxifin 6 months stopped
Arimedex stopped 9/12 (side effects)
Aromasin 10/12
Pray is offline   Reply With Quote
Reply

Thread Tools
Display Modes

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off

Forum Jump


All times are GMT -7. The time now is 01:09 PM.


Powered by vBulletin® Version 3.8.7
Copyright ©2000 - 2024, vBulletin Solutions, Inc.
Copyright HER2 Support Group 2007 - 2021
free webpage hit counter