HonCode

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

Herceptin / Tykerb Share your experiences or ask questions about Herceptin or Tykerb

Reply
 
Thread Tools Display Modes
Old 11-05-2010, 04:20 PM   #21
Jackie07
Senior Member
 
Jackie07's Avatar
 
Join Date: Jan 2008
Location: "Love never fails."
Posts: 5,802
Re: Tykerb/ herception in stage 3a locally advanced patients

ALLTO is currently on its Phase III and the patients will take the various treatments for one year. Here's a toll-free number to call for information:

Ph: 877-379-3718
__________________
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 groundless(granules?) nodule within the right lower lobe with indolent behavior. Due to possible adenocarcinoma, Recommend annual surveilence.
7-10-2019 CT to check lung nodule.

"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 11-08-2010, 06:27 PM   #22
DeenaH
Senior Member
 
Join Date: Apr 2010
Posts: 129
Re: Tykerb/ herception in stage 3a locally advanced patients

I just got news today that my insurance approved my Tykerb!! I was stage IIIC at diagnosis, and since i did chemo before surgery, my fear was they would consider this treatment as adjuvent which put put me at an even earlier stage. All of my worry was for nothing though, because it's been approved! I also found out Friday that my doctor's office never followed up with my insurance after they supposedly requested authorization 3 weeks prior. My insurance company had no record of the request. That means that my onc's office must have re-requested approval on Friday and got approval today. That was fast!
__________________
March 2010: Diagnosed with Stage IIIC IDC with axillary, mammary and suplaclavicular node involvement. ER/PR -, HER2+++. 7cm tumor in right breast.
April 2010: Started neoadjuvent chemo. 4 DD A/C every 2 weeks, 4 DD Taxotere every 3 weeks with Herceptin weekly.
August 2010: Finished chemo!
August 20, 2010: PET/CT showed no cancer in any nodes, and only a little uptake to the breast.
September 9, 2010: Bilateral mastectomy with immediate reconstruction with implants and Alloderm.
September 16, 2010: Pathology report showed 18/51 positive axillary nodes, 3.2cm tumor. Granual sized cancer found in the fatty tissue between levels 1 and 2.
October 19, 2010: CT showed several spots on lungs and 1 spot on liver. Liver spot is 2mm, lung spots range from 2mm to 4mm. We don't know if they are cancer or not.
12/15/10: Brain MRI clear
1/7/11: PET/CT
1/13/11: Recurrence in lungs. Start Tykerb
5/13/11: Progression in lungs
6/3/11: Lung surgery to get tumors for chemosensitivity testing.
DeenaH is offline   Reply With Quote
Old 11-08-2010, 10:51 PM   #23
Jackie07
Senior Member
 
Jackie07's Avatar
 
Join Date: Jan 2008
Location: "Love never fails."
Posts: 5,802
Re: Tykerb/ herception in stage 3a locally advanced patients

Wonderful news! So happy for you, Deena.
__________________
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 groundless(granules?) nodule within the right lower lobe with indolent behavior. Due to possible adenocarcinoma, Recommend annual surveilence.
7-10-2019 CT to check lung nodule.

"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 11-09-2010, 02:18 PM   #24
Sandra in GA
Senior Member
 
Join Date: Aug 2009
Location: Moultrie, GA
Posts: 431
Re: Tykerb/ herception in stage 3a locally advanced patients

Prayers have been answered! I am so happy for you Deena ~ Sandra
__________________
Diagnosed: 7/25/08 ~ age 63, no family history
Surgery: 8/14/08 Bilateral mastectomy; tumor left breast, node dissection; right prophylactic with expanders: 1/12/10 latisimuss dorsi flap on left side: 9/22/10 implants in
Pathology Report: ER/PR-; HER2+ (3+); Grade 3, StageIII; 3cm tumor plus 21/21 lymph nodes positive; 5cm DCIS
Chemo: A/C; Taxol/Herceptin/Tykerb; phase II study at Mayo adding Tykerb for early stage
Radiation: 25 rads
Vaccine: Walter Reed GP2/AE37 vaccine study ~ last booster 9/17/2012
Sandra in GA is offline   Reply With Quote
Old 11-10-2010, 01:11 PM   #25
Ellie F
Senior Member
 
Join Date: Feb 2009
Posts: 1,526
Re: Tykerb/ herception in stage 3a locally advanced patients

So pleased to hear your news. Praying for good results.

Ellie
Ellie F is offline   Reply With Quote
Old 12-02-2010, 04:03 PM   #26
Cat
Senior Member
 
Cat's Avatar
 
Join Date: May 2010
Posts: 184
Re: Tykerb/ herception in stage 3a locally advanced patients

I am currently on tykerb and herceptin indefinately and so far have felt very good. I was nervous at first about all the warnings but it has been very tolerable. The first month I had some diarrhea but now only peeling nails and slow growing nails and hair (no one can verify this is from the herceptin and/or tykerb). My concern is that the first month I received the tykerb from my hospitals pharmacy before we found out my insurance required we use their mail order specialty pharmacy. I am concerned that the tykerb is made unstable by the temperature during transport and that is why my symptoms are decreased and maybe the strength of the dose has been affected.
__________________
3/06 DX stage III er-pr-her2+++ breast, 1+node
age 49 and 364 days
3XAC 4X taxol and herceptin continue herceptin one year
bilat mastectomy w/TRAM
32 rads
9/08 recurrance 4 sternal nodes
mediastinoscopy, able to remove 3
taxotere, carboplatin, herceptin, x6
continue herceptin indefinately
5/10 recurrance in same node/area
mediastinoscopy, removed nodes
added tykerb
27 rads
10/18/10 PET shows inflammation no active disease
8/2011 recurrence one right mediastinal node, xeloda and proton radiation to node.
D/C xeloda due to toxicity
12/5 PET scan clear
2/2012 colon blockage, breast cancer
(never thought it could go there! thought I was constipated)
start abraxane, herceptin, continue tykerb
10/2012 Kidney ablation (renal CA!)
3/2013 CT and biopsy R kidney (BC met to R kidney)
4/4/2013 Begin Kadcyla
7/30/13 Craniotomy cerebellar mets, 1.7cm 3cm
Sept 4-6 post op cyberknife
Sept 23 ablation right kidney (blow up pesky breast ca met)
Oct headaches MRI Oct 10 (only surgical changes ! Yay!)
Short of breath. CT, pulmonary function, echo
New crap in right lung heart good. Pooh!
12/13 DC kadcyla. Begin halaven
2/14 MRI brain NED Yay!
4/3/14 CT mostly stable but breast mets r kidney growing
4/16/14 ablation right kidney again
Continue halaven, tykerb
dc halaven gemzar?
2nd opinion May 14
Cat is offline   Reply With Quote
Old 12-05-2010, 09:45 AM   #27
my2boys
Member
 
Join Date: Dec 2008
Posts: 16
Re: Tykerb/ herception in stage 3a locally advanced patients

My Tykerb is sent to me via UPS, usually the day after I order it. Never thought about the temperature thing, but not much I can do about it

The biggest complaint I have with Tykerb is that my liver numbers are up.....then back to normal.....then up....then normal. It's like a roller coaster. The diarrhea is manageable and it seems like it isn't as bad as when I first started. I still have 6 months to go on Tykerb, then I will continue on with Herceptin and also Arimidex, since my cancer recurred not only Her2+, but weakly ER+.

One thing I noticed.....Tykerb and dairy do not mix....diarrhea is worse if I eat dairy. I miss scrambled eggs, sour cream or even a bowl of ice cream.
my2boys is offline   Reply With Quote
Old 12-05-2010, 10:33 AM   #28
Sandra in GA
Senior Member
 
Join Date: Aug 2009
Location: Moultrie, GA
Posts: 431
Re: Tykerb/ herception in stage 3a locally advanced patients

My2boys,
I did not have any problems with scrambled eggs. I just added a little water and no milk. You are right about dairy products! Also fresh fruits and veggies. I just had to leave all of those off. I was able to eat canned fruits. The only veggies I had no problems with were green beans and asparagus. It was amazing how fast those problems went away when I finished. By the end of the week, I could eat anything I wanted. And, boy, were those fresh fruits delicious!
Sandra
__________________
Diagnosed: 7/25/08 ~ age 63, no family history
Surgery: 8/14/08 Bilateral mastectomy; tumor left breast, node dissection; right prophylactic with expanders: 1/12/10 latisimuss dorsi flap on left side: 9/22/10 implants in
Pathology Report: ER/PR-; HER2+ (3+); Grade 3, StageIII; 3cm tumor plus 21/21 lymph nodes positive; 5cm DCIS
Chemo: A/C; Taxol/Herceptin/Tykerb; phase II study at Mayo adding Tykerb for early stage
Radiation: 25 rads
Vaccine: Walter Reed GP2/AE37 vaccine study ~ last booster 9/17/2012
Sandra in GA is offline   Reply With Quote
Old 01-25-2011, 01:24 PM   #29
hezzy
Senior Member
 
Join Date: Aug 2009
Location: Paxton, Ill
Posts: 32
Re: Tykerb/ herception in stage 3a locally advanced patients

I am taking Tykerb,Xeloda for brain mets. Herceptin for her2+, and also zometa for bone mets. and anti.est shot since I'm est+
I take tykerb, and xeloda at home. Tykerb I take daily than Xeloda I take 14 on 7 days off 14 back on.
I go to Carle Hospital in Urbana, Illinios and see ONC. DR. Johnson she is great. I demanded that since I have brain mets she put me on something to help me fight other than just radiation treatment she agreed that it is known (yet, not proven)to add life.
__________________
-July 07 - DX w/ICD stage 3a, est+, her2+
- started a/c four doses
-Aug 07 -DX w/ bone mets to shoulder and rib 10 days rads
- 6 mths taxol
-6 mths abrexene
- Nov 07 started herceptin still on
- was on tamoxifin wasn't working, gettin something new soon


Aug 09
- brain mets
- 3 tumors
- highest being 4cm large
- others under 2cm
- WBR rads in morning, than afternoon hitting each one direct
- rads to vertebrate

- Sept 09
- getting ready to start Xeloda
- continue herceptin
- just finished w/ rads on brain mets, and vertebrate

(think im doing this right now)
hezzy 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 07:29 AM.


Powered by vBulletin® Version 3.8.7
Copyright ©2000 - 2019, vBulletin Solutions, Inc.
Copyright HER2 Support Group 2007
free webpage hit counter