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Old 02-27-2010, 05:12 PM   #1
gourim
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Smile Herceptin/Tykerb clinical trial for early stage

Hello...
Dxed on 11/04, joined the herceptin/tykerb clinical trial on 12/31, my lump has shrunk from 7cm*4cm to 1cm * 0.6cm.....just wanted to share the good news with all..
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Old 02-27-2010, 06:53 PM   #2
bejuce
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Re: Herceptin/Tykerb clinical trial for early stage

Congratulations!!! That is great news!!!
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ER+ (30%)/PR-/HER-2+, stage 3

Diagnosed on 02/18/09 at 38 with a huge 12x10 cm tumor, after a 6 month delay. Told I was too young and had no risk factors. Found swollen node during breastfeeding.
March-August 09: neo-adjuvant chemo, part of a trial at Stanford (4 DD A/C, 4 Taxotere with daily Tykerb), loading dose of Herceptin
08/12/09 - bye bye boobies (bilateral mastectomy)
08/24/09 - path report shows 100 % success in breast tissue (no cancer there, yay!), 98 % success in lymphatic invasion, and even though 11/13 nodes were still positive, > 95 % of the tumor in them was killed. Hoping for the best!
September-October 09: rads with daily Xeloda
02/25/10 - Cholecystectomy
05/27/10 - Bone scan clear
06/14/10 - CT scan clear, ovarian cyst found
07/27/10 - Done with Herceptin!
02/15/11 - MVA-BN HER-2 vaccine trial
03/15/11 - First CA 15-3: 12.7 and normal, yay!
10/01/11 - Bone scan and CT scan clear, fatty liver found
now on Tamoxifen and Aspirin


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Old 02-27-2010, 06:59 PM   #3
vlcarr
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Re: Herceptin/Tykerb clinical trial for early stage

Yeah, doing the happy dance! It's good to see a fellow trial member on the board but better to see you are getting GREAT results

So thrilled for you.
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Vicky
Age 47, TN, Diagnosed 05/09
Her2+, ER/PR-, Stage III, 2 tumors = 1 8cm tumor
Grade 3
Sentinel Node Biopsy-speck present in 1 node
Completed 3 month clinical trial of weekly Herceptin and 1000mg Tykerb daily
Tumor no longer present
Right mastectomy and lymph node removal 09/25/09
No cancer present at time of surgery, none in lymph nodes
Start TCH 10/15, every 3 weeks for 4 months followed by radiation
Finished chemo 01/28/10-YEAH!
Herceptin every 3 wks until end of June
Radiation begins 03/01, 6 1/2 weeks
Radiation complete--Yeah!!
Developed lymphedema after radiation
In hospital for 4 days with pneumonia:(
Herceptin done! 06/24/10
Port Removed 07/08/10
Still in PT for lymphedema and mobility issues
DIEP Reconstruction 05/11
I can be changed by what happens to me, but I refuse to be reduced by it~~Maya Angelou
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Old 02-27-2010, 10:53 PM   #4
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Re: Herceptin/Tykerb clinical trial for early stage

very nice news!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
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Old 03-01-2010, 08:39 PM   #5
grammytotheboys
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Re: Herceptin/Tykerb clinical trial for early stage

That's terrific news! I am deciding whether or not to join that trial...I think I am going to do it!
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No family history of BC. History of cysts -left breast lump felt @ 1/1 had mammo and ultrasound 1/18, biopsy 1/22, dx IDC, Her2 +, ER and PR 10% each, 1.7 cm poorly differentiated. Lumpectomy 2/9 sentinel nodes clear, 6 biopsied all negative, margins clear. Meeting with oncologist, radiologist, and surgeon on 3/1 for initial consult.
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Old 03-02-2010, 09:35 AM   #6
gourim
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Re: Herceptin/Tykerb clinical trial for early stage

Oh yes, especially if your oncologist thinks that ur tumor fits the bill for the trial ie. it has a high % of Her2+vity (mine was 100%) this trial will do wonders.....and the best part is the side effects or should I say lack of side effects...I only had to deal with a mild rash..Since I am premenopausal with a hormone positive tumor, I was given goserelin to shut down my ovaries and Letrozole to bring down my hormone levels further..that causes Hot flashes ..but these are the only 2 side effects I had.
Some womed have diarrehea..but I heard it is well managed with OTC drugs...

All the best!!!!
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Old 03-22-2010, 03:37 PM   #7
gourim
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Re: Herceptin/Tykerb clinical trial for early stage

Hello everybody,

My clinical trial has ended, I cant feel the lump any more, but the MRI did measure something @ 1cm * 1cm. The report said that the area was minimally enhanced.

So, I am having a lumpectomy and axillary node removal tomorrow 03/23, will keep you updated with the pathology report specifics...
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Old 03-22-2010, 03:55 PM   #8
grammytotheboys
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Re: Herceptin/Tykerb clinical trial for early stage

Good luck lady! My lumpectomy was Feb 9, tumor 1.7cm and recovery wasn't bad at all. I did get this weird swishing sound afterwards from fluid filling up quickly where the surgeon removed the tissue.( He doesn't use drains as he feels you get a better cosmetic result.) I'm thinking great thoughts for you!
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No family history of BC. History of cysts -left breast lump felt @ 1/1 had mammo and ultrasound 1/18, biopsy 1/22, dx IDC, Her2 +, ER and PR 10% each, 1.7 cm poorly differentiated. Lumpectomy 2/9 sentinel nodes clear, 6 biopsied all negative, margins clear. Meeting with oncologist, radiologist, and surgeon on 3/1 for initial consult.
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Old 03-22-2010, 09:48 PM   #9
vlcarr
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Re: Herceptin/Tykerb clinical trial for early stage

Will be thinking about you tomorrow. Hope your surgery goes well and nothing is in your lymph nodes. Really happy you are able to get the lumpectomy.
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Vicky
Age 47, TN, Diagnosed 05/09
Her2+, ER/PR-, Stage III, 2 tumors = 1 8cm tumor
Grade 3
Sentinel Node Biopsy-speck present in 1 node
Completed 3 month clinical trial of weekly Herceptin and 1000mg Tykerb daily
Tumor no longer present
Right mastectomy and lymph node removal 09/25/09
No cancer present at time of surgery, none in lymph nodes
Start TCH 10/15, every 3 weeks for 4 months followed by radiation
Finished chemo 01/28/10-YEAH!
Herceptin every 3 wks until end of June
Radiation begins 03/01, 6 1/2 weeks
Radiation complete--Yeah!!
Developed lymphedema after radiation
In hospital for 4 days with pneumonia:(
Herceptin done! 06/24/10
Port Removed 07/08/10
Still in PT for lymphedema and mobility issues
DIEP Reconstruction 05/11
I can be changed by what happens to me, but I refuse to be reduced by it~~Maya Angelou
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Old 04-01-2010, 01:26 PM   #10
gourim
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Re: Herceptin/Tykerb clinical trial for early stage

Had a lumpectomy and axillary node removal on 03/23..

The path report came in yesterday..first the good news...no cancer in axillary lymph nodes any more..even the lymph node that tested positive in a previous biospy came back negative...0/8 lymph nodes clear.

No malignancy in the lymph fluids or the surrounding blood vessels

Clear margins, the tumor is all out.

The not so good news..a malignany with the greatest dimension being 0.7 cm identified.

However. low proliferation rate..only 1/10.

Though tumor is small and is node negative, since my node was positive before the clinical trial, I have been staged as IIa...

I will be meeting the oncologist and radiologist to dicuss the chemo and radiation..

Over all I am elated to have gone from 70mm to 7mm...

Three cheers for this new treatment for Her2+ve tumors..
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Old 04-02-2010, 02:37 PM   #11
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Re: Herceptin/Tykerb clinical trial for early stage

Glad to hear your good news.

Amelia
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Old 04-04-2010, 03:34 PM   #12
Jackie07
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Re: Herceptin/Tykerb clinical trial for early stage

That is so wounderful!

We love to hear about new treatments/clinical trials that're so successful. Be sure to keep us updated.

ps. Love your smile in the picture.
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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
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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
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Tamoxifen B. scan
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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
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Old 05-30-2010, 07:36 PM   #13
Emilie
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Re: Herceptin/Tykerb clinical trial for early stage

Greetings,

I was recently diagnosed with a new primary HER 2 neu positive breast cancer, stage 1, no lymph node involvement. I just started the TCH chemo regimen but am wondering if anyone has heard of early stage patients receiving the Tykerb/Herceptin combo outside of the clinical trials?

Thanks so much in advance for any advice!
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Old 05-30-2010, 10:18 PM   #14
Jackie07
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Re: Herceptin/Tykerb clinical trial for early stage

Emilie,

I doubt if there's any Tykerb/Herceptin combo available right now since it is still on the trial stage. However, we did have members who had reported getting Herceptin 'off label' way before the drug was approved by the FDA. Perhaps you can request for it through your physician/hospital. [correction: check out Shondagaylord's thread on 'Chemo and Tykerb & Herceptin ' just next to this thread. Seems several members have already had the combo.]

TCH is a good combo for stage I especially when there's no lymph node involvement. Since I've had a recurrence that was overlooked for 4 years, I'd like to caution you about the problems of mammogram - it's only accurate in 70% of the case.
Stay diligent even after you have completed your treatment.
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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

Last edited by Jackie07; 05-30-2010 at 10:26 PM..
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Old 05-30-2010, 10:27 PM   #15
Emilie
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Re: Herceptin/Tykerb clinical trial for early stage

Thanks so much, I really appreciate it. I will follow your advice. I hope you're doing very well.
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Diagnosed w ER+, Her2 neu negative stage I in 2001. Diagnosed in April 2010 with new primary tumor, Her2 +++, ER+, neg nodes, stage I. Currently on 1/6 of TCH.
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Old 05-31-2010, 07:38 AM   #16
gourim
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Re: Herceptin/Tykerb clinical trial for early stage

From my dicussions with my onco, what I gathered was that, for early stage cancer Tykerb was available only via trials...but that was 6 mnths ago and things in cancer treatment change rapidly ..so as Jackie mentioned might help asking ur onco....all the best!!
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Old 06-03-2010, 06:40 PM   #17
hutchibk
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Re: Herceptin/Tykerb clinical trial for early stage

I have been on the combo for 18 months and it is holding me pretty darned steady... I have loved this combo.

And I am not in a trial... it's an available combo (or at least not a disapproved combo) for mets patients.
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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 06-03-2010, 07:44 PM   #18
Nancy L
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Re: Herceptin/Tykerb clinical trial for early stage

Simply fabulous news for early stage patients. Good for you. I also am Stage IV on this combo for the past 15 months. So far, so good.
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Old 06-04-2010, 07:53 AM   #19
Ellie F
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Re: Herceptin/Tykerb clinical trial for early stage

Brenda and Nancy
Really glad to hear that you both are dong well on this combo. This and T-DM1 seem like the way forward,less toxicity and good response.
As you know due to costs it's currently not an option here on the NHS so it's save up time in case the need arises. Thanks for sharing.
Ellie
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Old 06-04-2010, 11:32 PM   #20
vlcarr
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Re: Herceptin/Tykerb clinical trial for early stage

Hopefully this type of trial will make Tykerb available to patients like me & Gouri who were newly diagnosed with no mets. It worked so wonderfully for me. Part of the trial was to get biopsies along the way. The first time mine was due they could not even find the tumor on ultrasound to get the biopsy and by the end of the 3 months my tumor was just melted away. They never did get that biopsy even though they tried one more time after the first one and there was just nothing there on that ultrasound either!
__________________
Vicky
Age 47, TN, Diagnosed 05/09
Her2+, ER/PR-, Stage III, 2 tumors = 1 8cm tumor
Grade 3
Sentinel Node Biopsy-speck present in 1 node
Completed 3 month clinical trial of weekly Herceptin and 1000mg Tykerb daily
Tumor no longer present
Right mastectomy and lymph node removal 09/25/09
No cancer present at time of surgery, none in lymph nodes
Start TCH 10/15, every 3 weeks for 4 months followed by radiation
Finished chemo 01/28/10-YEAH!
Herceptin every 3 wks until end of June
Radiation begins 03/01, 6 1/2 weeks
Radiation complete--Yeah!!
Developed lymphedema after radiation
In hospital for 4 days with pneumonia:(
Herceptin done! 06/24/10
Port Removed 07/08/10
Still in PT for lymphedema and mobility issues
DIEP Reconstruction 05/11
I can be changed by what happens to me, but I refuse to be reduced by it~~Maya Angelou
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