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Old 01-18-2008, 03:52 PM   #1
duga35
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Join Date: Jan 2008
Posts: 154
Question Tamoxifin?

Could someone tell me exactly what this is and possible side effects?

My surgeon told me today that is the only recommended treatment for me at this time, and I haven't even seen the oncologist yet.

Any info is greatly appreciated!!
__________________
Diagnosis and Treatment: DX 12/07/07
Male Diagnosed with DCIS at age 39
Mastectomy on right breast
Tumor Stage pt1b NO MO
DCIS Tumor size 1.5 x 1.x .6cm
Infiltration tumor size .25X.17 cm
Bloom-Richardson Grade 3(score 8)
Nuclear Grade 3 with comedo necrosis
Estrogen+/Progestrone+/HER-2/Neu +++
FISH ratio 4.31
Lymph node removal scheduled 1/07/08
17 nodes tested and all negative 1/08/08
Started Tamoxifin 1/29/08
Oncotype DX score 52 (off the charts, according to my onc!!!)
Starting TCH 3/14/08
BRCA I Positive BRCA II Negative
Finished TC 6/27/08 continue Herceptin
8/1/08 Herceptin stopped due to low Muga score
Mastectomy on left breast 11/10/08
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Old 01-18-2008, 04:39 PM   #2
LOPSIDED
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Estrogen Can Promote The Growth Of Cancer Cells And Tamoxifen Can Interfere With The Activity Of Estrogen An Slow The Growth Of Cancer Cells & Reduce Risk Of Reocurrence. Most Common Side Effect I Believe Is Hot Flashes. There Is A Long List Of Side Effects With Any Medication. I Took It For About 9 Months And I Can't Really Think Of Any Side Effects I Had, Sometimes I Had Trouble Sleeping But I Think That Was Because Of Stress Of Everything I Had Been Thru, Hope It Works Well For You.
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SHEILA (45)
09/2005--BREAST CANCER/8 POS NODES --A/C, MASTECTOMY,TAXOTERE, RADS, TAMOXIFEN,HERCEPTIN
02/2007--B/C METS TO OVARIES--HYSTERECTOMY, FASLODEX
12/2007--ENLARGING LYMPH NODES IN ABDOMEN--IXEMPRA, THEN TYKERB
08/2008--COLON TUMOR--A/C AGAIN,
12/2008--ABDOMEN TUMOR--AVASTIN/NAVELBINE FEMARA
05/2009--MET TO SPINE (L2) RADS
CURRENT TREATMENT
07/2009- START ZOMETA MONTHLY, XELODA & ABRAXANE......SURVIVING THE BEST I CAN
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Old 01-19-2008, 10:28 AM   #3
debski
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Smile

Quite right- tamoxifen is a chemical which blocks the action of natural oestrogens (UK spelling) . So it interferes with the signals that tell the cells to grow- so they don't! That's good. It only works for people who have cells that are oestrogen positive. (respond to oestrogen).

I am on tamoxifen and it does have side effects as it has helped to keep me in a kind of menopause. I have hot flashes, leg cramps and I think my memory is not as good (but I can't really remember). I am also very moody.

All in all I think it is fairly well tolerated but can increase risks of thrombosis (blood clots). That's only a problem for few women though and your doctor will know.

I don't have any major problems with taking it but I am taking so many other things it's hard to attribute side effects to any one thing.

I am not worried about taking tamoxifen at all. Hope this helps. I am not a Doctor but I am a biochemist.
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Old 01-20-2008, 01:09 PM   #4
duga35
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Thank you for the replies

I just wonder how it works for men.
I guess I don't have to worry about hot flashes, etc, but I just wonder how it works for men
__________________
Diagnosis and Treatment: DX 12/07/07
Male Diagnosed with DCIS at age 39
Mastectomy on right breast
Tumor Stage pt1b NO MO
DCIS Tumor size 1.5 x 1.x .6cm
Infiltration tumor size .25X.17 cm
Bloom-Richardson Grade 3(score 8)
Nuclear Grade 3 with comedo necrosis
Estrogen+/Progestrone+/HER-2/Neu +++
FISH ratio 4.31
Lymph node removal scheduled 1/07/08
17 nodes tested and all negative 1/08/08
Started Tamoxifin 1/29/08
Oncotype DX score 52 (off the charts, according to my onc!!!)
Starting TCH 3/14/08
BRCA I Positive BRCA II Negative
Finished TC 6/27/08 continue Herceptin
8/1/08 Herceptin stopped due to low Muga score
Mastectomy on left breast 11/10/08
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Old 01-20-2008, 01:52 PM   #5
debski
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I have sent you a private message but you know you can be very hopeful as DCIS is pre-cancerous. The cells have not escaped from the ducts.
I had breast cancer and DCIS in the margins of the lump and I was told that if I was 60 they would n't even bother clearing it up as it probably would never turn into cancer. They just wanted to be on the safe side.

I have a friend who had DCIS and thought she had cancer- but it is not strictly able to escape so that's all good news.
Please do some research to see if tamoxifen is right for you because I sometimes think that when you pay for healthcare you get overtreated ( similarly I think we are undertreated in the uk).
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Old 01-20-2008, 01:56 PM   #6
debski
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About 9 out of 10 male breast cancers (90%) are oestrogen receptor positive, so hormone therapy is commonly used. Biological therapies may also sometimes be used.

Just read this-looks like you should have tamoxifen.
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Old 01-20-2008, 02:01 PM   #7
chrisy
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I'll weigh in differently on this one.
First, from what some of my former chemo-mates say, men are not exempt from hot flashes under treatment!

Second, since you are ER+, tamoxifen may be a good option for you to prevent recurrence. I would also suggest you try to get Herceptin, as Her2+ is aggressive.

However, please keep in mind, DCIS in general is considered "curable" and 98+% of patients never recur even without any systemic treatment.

I know I sound conflicted on this topic but with good reason as I am one of the 1%-ers!
Good luck
Chris
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June 2002 extensive hi grade DCIS (pre-cancer-stage 0, clean sentinal node) Mastectomy/implant - no chemo, rads. "cured?"
9/2004 Diag: Stage IV extensive liver mets (!) ER/PR- Her2+++
10/04-3/05 Weekly Taxol/Carboplatin/Herceptin , complete response!
04/05 - 4/07 Herception every 3 wks, Continue NED
04/07 - recurrence to liver - 2 spots, starting tykerb/avastin trial
06/07 8/07 10/07 Scans show stable, continue on Tykerb/Avastin
01/08 Progression in liver
02/08 Begin (TDM1) trial
08/08 NED! It's Working! Continue on TDM1
02/09 Continue NED
02/10 Continue NED. 5/10 9/10 Scans NED 10/10 Scans NED
12/10 Scans not clear....4/11 Scans suggest progression 6/11 progression confirmed in liver
07/11 - 11/11 Herceptin/Xeloda -not working:(
12/11 Begin MM302 Phase I trial - bust:(
03/12 3rd times the charm? AKT trial

5/12 Scan shows reduction! 7/12 More reduction!!!!
8/12 Whoops...progression...trying for Perjeta/Herceptin (plus some more nasty chemo!)
9/12 Start Perjeta/Herceptin, chemo on hold due to infection/wound in leg, added on cycle 2 &3
11/12 Poops! progression in liver, Stop Perjeta/Taxo/Herc
11/12 Navelbine/Herce[ptin - try for a 3 cycles, no go.
2/13 Gemzar/Carbo/Herceptin - no go.
3/13 TACE procedure
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Old 01-20-2008, 02:40 PM   #8
duga35
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I was very relieved when my surgeon told me that chemo was not recommended as a treatment for me at this tiime, and that Tamoxifin was all that the breast cancer board recommended. I was also kind of surprised that Herceptin wasn't because I was strongly positive for HER-2.
I haven't even seen my oncologist yet, so I'm waiting to ask her all of those questions.

Thank you, everyone. I can honestly say that everyone here has been wonderful, especially with a man who really has no clue of what he is talking about but trying to learn!

Doug
__________________
Diagnosis and Treatment: DX 12/07/07
Male Diagnosed with DCIS at age 39
Mastectomy on right breast
Tumor Stage pt1b NO MO
DCIS Tumor size 1.5 x 1.x .6cm
Infiltration tumor size .25X.17 cm
Bloom-Richardson Grade 3(score 8)
Nuclear Grade 3 with comedo necrosis
Estrogen+/Progestrone+/HER-2/Neu +++
FISH ratio 4.31
Lymph node removal scheduled 1/07/08
17 nodes tested and all negative 1/08/08
Started Tamoxifin 1/29/08
Oncotype DX score 52 (off the charts, according to my onc!!!)
Starting TCH 3/14/08
BRCA I Positive BRCA II Negative
Finished TC 6/27/08 continue Herceptin
8/1/08 Herceptin stopped due to low Muga score
Mastectomy on left breast 11/10/08
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Old 01-20-2008, 04:55 PM   #9
dhealey
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duga35, I would definately ask for the herceptin at the least for 12 months. Her2 is very aggressive. I think one of the other side effects of tamoxifen is cataracts, so if you have vision problems see an eye doctor. My onc just put me on tamoxifen after trying arimidex and aromasin. I had many side effects with these. Anyone else postmenopausal and taking tamoxifen? I know it works if premenopausal, so I would like some input from those who are postmenopausal and taking it.
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Debbie in North Carolina
Diag 10/2006-high grade invasive ductal carcinoma- mastectomy L breast
2.5 cm tumor ER/PR pos-Her2+++
4 rounds A/C, 4 rounds Taxol
Herceptin every 3 weeks until Jan. 2008
6/18/07 prophylatic mastectomy R breast
8/2007 started aromasin/stopped arimidex (side effects)
12/07 stopped aromasin due to side effects (now what?)
Finished herceptin 1/8/08
started tamoxifen for 2 years then will switch to femera
allergic to tamoxifen started femera 4/2008
June 20, 2008 portacath removed
Learnig to live life to the fullest!
Stopped Femera due to side effects
July 28, 2008 start trial for breast cancer vaccine
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Old 01-21-2008, 03:02 PM   #10
Believe51
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Thumbs up Hey Doug...

Ed was just changed from Tamoxifen to Faslodex, the only reason for this change was we needed to stir up the mix for treatment. He had no major side effects, minor effects were hot flashes (tolerable though) but cannot say what else he had because he has always been a sick little boy since the start of this journey. The standard treatment for males IS Tamoxifen although there are other options. New research is changing that norm since we are investigating males seperately now...Yeehaa!!!! I do not think you should have many issues taking this medication and am so glad that this is the next course of your journey, not chemo. Keeping you in these prayers of ours..Go Get 'em Friend!!>>Believe51
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9/7/06Husband 50yrs=StageIV IBC/HER2+,BoneMets10/06TaxotereX10,'H'1X wk,Zometa,Tamoxifen4/12/07Last Tax5/18/07Pet=Rapid Cell Activity,No Organ Mets,Lytic Lesions,Degeneration,Some Bone Repair5/07ChemoFail6/01/07Pleural Thoracentisis=Effusions,NoMalignantCells6/19/07+7/2/07DFCI
6/25/07BrainMRI=BrainMets,Many<9mm7/10/07WBR/PelvisRad37.5Gx15&Nutritionist8/19/07T/X9/20/07BrainMRI=2<2mm10/6/07Pet=BoneProgression
10/24/07ChemoFail11/9/07A/Cx10,EndTam12/7/07Faslodex12/10/07Muga7512/13/07BlasticLesions1/7/08BrainMRI=Clear4/1/08Pet=BoneImprovement,
NoProgression,Stable4/7/08BrainPerfect5/16/08Last A/C8/26/08BrainMets=10(<9mm)9/10/08Gamma10/30/08Met=5mm12/19/08Gamma5mets5
12/22/08SpinalMets1/14/09SpinalRads2/17/09BrainMRI=NoNewMets4/20/09BoneScan5/14/09Ixempra6/1/09BrainMRI=NumerousMets6/24/09DFCIw/DrBurstein6/26/09Continue
Ixempra/Faslodex/Zometa~TM now lower7/17/09Stop Ixempra By Choice9/21/09HOSPICE10/16/09Earned His Deserved Wings And Halo=37 Month Fight w/Stage 4 IBC, Her2+++,My Hero!!
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Old 01-23-2008, 04:09 AM   #11
Jean
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Hi Doug,
Just to tag onto additional information on DCIS -
There is not enough research and study on DCIS and there are different
types of DCIS...therefore, you MUST be diligent in your care.
I had a very early DCIS which did become invasive (very tiney MM size)
there is much debate over treatment in early breast cancer. For the most part keep in mind that onc. are not sure themselves with just how or what to treat early stagers with. Now when you throw HER2 into the mix that changes the profile of a breast cancer dx.

There is a link on our site for DCIS..that you should read with NEW information that Lani posted..Prior to seeing your onc. I would have
many questions prepared regarding the fact that your DCIS is HER2.

Dr. Slamon the father of herceptin believes all who have HER2 should
have herceptin. Thankfully your DCIS did not show any invasive portion.
But I would not dismiss this DCIS ...since it is HER 2. I doubt that an onc would treat you with chemo since your DCIS is not invasive. The hormonal treatment is the normal course of treatment.

I will find the link on our site and post it for you reveiw.

Doug, continue to seek and ask questions as this is new territory (DCIS)
and many of us believe unchartered and lacking much needed research.

Please stay in touch and let us know how your onc. visit goes.
Wishing you all the best!
Hugs,
Jean
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Stage 1, Grade 1, 3/30/05
Lumpectomy 4/15/05 - 6MM IDC
Node Neg. (Sentinel node)
ER+ 90% / PR-, Her2+++ by FISH
Ki-67 40%
Arimidex 5/05
Radiation 32 trt, 5/30/05
Oncotype DX test 4/17/06, 31% high risk
TOPO 11 neg. 4/06
Stopped Arimidex 5/06
TCH 5/06, 6 treatments
Herceptin 5/06 - for 1 yr.
9/06 Completed chemo
Started Femara Sept. 2006
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Old 01-23-2008, 04:23 AM   #12
Jean
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Wink doug....important read.

Doug,
Please click onto the search and type in the following:

High Grade DCIS and read the posts. Please also hit the link that Lani
posted with updated information on DCIS.

I am going to post on the main board (HER2 group) viewing regarding
this topic...so do look for replies.

Regards,
jean
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Stage 1, Grade 1, 3/30/05
Lumpectomy 4/15/05 - 6MM IDC
Node Neg. (Sentinel node)
ER+ 90% / PR-, Her2+++ by FISH
Ki-67 40%
Arimidex 5/05
Radiation 32 trt, 5/30/05
Oncotype DX test 4/17/06, 31% high risk
TOPO 11 neg. 4/06
Stopped Arimidex 5/06
TCH 5/06, 6 treatments
Herceptin 5/06 - for 1 yr.
9/06 Completed chemo
Started Femara Sept. 2006

Last edited by Jean; 01-23-2008 at 09:36 AM..
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Old 01-23-2008, 02:44 PM   #13
Jean
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Doug,
The following is a post from Becky:

After getting wide clean margins, I believe slides must be scrutinized by several large cancer centers (like Sloan, Johns Hopkins, MD Anderson or the like) to absolutely ensure there is no invasive component. I am not sure that any DCIS that can be palpated or is high grade is truly DCIS - period. What do the clean margins look like too - lots of atypical hyperplasia? The pathology report can tell you this. This is not cancer and is truly precancer but has a good - no great, chance of becoming DCIS/IDC. So you cut out the DCIS but the precancer is left behind to change to DCIS - if high grade, this will happen especially if there are no lifestyle interventions (I believe that your fate can be changed if you change - maybe not a 100% assurity but it can happen - it does with clogging arteries and this is "clogging" ducts). So, high grade Her2+ bc should be treated with radiation and I think Herceptin too. The trial Lani describes is great. As with cancer, DCIS are different diseases too. For example, less than 2 cm tumors that are only ER/PR+, low to intermediate grade in older women only get an AI (and they think this is the case if 1-3 nodes + in the future too), but that could never be if you are Her2+ cancer so.........

High grade is different and high grade might be invasive without anyone knowing.
__________________
Please go armed to your onc. let us know how you do.
Wishing you the Very Best,
Jean
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Stage 1, Grade 1, 3/30/05
Lumpectomy 4/15/05 - 6MM IDC
Node Neg. (Sentinel node)
ER+ 90% / PR-, Her2+++ by FISH
Ki-67 40%
Arimidex 5/05
Radiation 32 trt, 5/30/05
Oncotype DX test 4/17/06, 31% high risk
TOPO 11 neg. 4/06
Stopped Arimidex 5/06
TCH 5/06, 6 treatments
Herceptin 5/06 - for 1 yr.
9/06 Completed chemo
Started Femara Sept. 2006
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Old 01-23-2008, 09:35 PM   #14
Lani
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Doug

I had lots of information on male breast cancer forwarded to Believe 51 as a Christmas gift.

The information was exclusively about male breast cancer--invasive, not DCIS as I remember, and a specific request was made to see if there were any referrals to inflammatory bc in males. Some info was in general reviews, some more specific, but there was probably info on male DCIS in there Feel free to email her to forward them on.

Good luck!
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Old 01-24-2008, 01:27 PM   #15
duga35
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Jean, thank you for all of your information, it was extremely helpful!

I will certainly discuss Herceptin with my oncologist. After I have read many of the posts here on this board about it I am certain that is something for me to discuss with him.


Healthy51, if you could forward the info that Lani sent to you that would be very helpful

Hello Lani, how are you?
__________________
Diagnosis and Treatment: DX 12/07/07
Male Diagnosed with DCIS at age 39
Mastectomy on right breast
Tumor Stage pt1b NO MO
DCIS Tumor size 1.5 x 1.x .6cm
Infiltration tumor size .25X.17 cm
Bloom-Richardson Grade 3(score 8)
Nuclear Grade 3 with comedo necrosis
Estrogen+/Progestrone+/HER-2/Neu +++
FISH ratio 4.31
Lymph node removal scheduled 1/07/08
17 nodes tested and all negative 1/08/08
Started Tamoxifin 1/29/08
Oncotype DX score 52 (off the charts, according to my onc!!!)
Starting TCH 3/14/08
BRCA I Positive BRCA II Negative
Finished TC 6/27/08 continue Herceptin
8/1/08 Herceptin stopped due to low Muga score
Mastectomy on left breast 11/10/08
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Old 01-24-2008, 02:03 PM   #16
Jean
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Doug,
Wishing you a informative visit with your onc. please let us know how it all goes. All good wishes, thoughts and prayers are with you!

Kindly,
jean
__________________
Stage 1, Grade 1, 3/30/05
Lumpectomy 4/15/05 - 6MM IDC
Node Neg. (Sentinel node)
ER+ 90% / PR-, Her2+++ by FISH
Ki-67 40%
Arimidex 5/05
Radiation 32 trt, 5/30/05
Oncotype DX test 4/17/06, 31% high risk
TOPO 11 neg. 4/06
Stopped Arimidex 5/06
TCH 5/06, 6 treatments
Herceptin 5/06 - for 1 yr.
9/06 Completed chemo
Started Femara Sept. 2006
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Old 01-24-2008, 04:05 PM   #17
duga35
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Thank you again, and I will let you know how the visit went.

I saw the neurologist today, and after he examined me he felt that I showed no signs of MS, but then showed me the MRI of my brain. I have 9 lesions that he says absolutely says that I have it. I'm having a spinal tap done Feb. 11 to see if I do. If I do he says that I have lived with it for years and never even knew it, and if so he can prescribe drugs/treatment that will stop the progression with hopes I can continue to lead a normal life. So that was some good news that I got today. It certainly has been an interesting month!
I'm ready for a boring period!
__________________
Diagnosis and Treatment: DX 12/07/07
Male Diagnosed with DCIS at age 39
Mastectomy on right breast
Tumor Stage pt1b NO MO
DCIS Tumor size 1.5 x 1.x .6cm
Infiltration tumor size .25X.17 cm
Bloom-Richardson Grade 3(score 8)
Nuclear Grade 3 with comedo necrosis
Estrogen+/Progestrone+/HER-2/Neu +++
FISH ratio 4.31
Lymph node removal scheduled 1/07/08
17 nodes tested and all negative 1/08/08
Started Tamoxifin 1/29/08
Oncotype DX score 52 (off the charts, according to my onc!!!)
Starting TCH 3/14/08
BRCA I Positive BRCA II Negative
Finished TC 6/27/08 continue Herceptin
8/1/08 Herceptin stopped due to low Muga score
Mastectomy on left breast 11/10/08
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Old 01-24-2008, 05:37 PM   #18
Lolly
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Doug, I don't have anything to add on the cancer front as you seem pretty much up to speed there
Just want to tell you that a friend of ours who had fairly advanced MS by the time he started some of the newer treatments you mentioned has in the last several years been doing quite well. I also met a man at my treatment center who was getting treatment for very early MS that had been diagnosed 5 years previously by accident when he was having scans for an elective surgery. He had started treatment then, and he said he didn't even have symptoms for most of 5 years since being diagnosed, and was only just starting to "feel" that it was time for another infusion (at that point he was getting treatment every 6 months) because he would be feeling tired and just sort of off. So there's great hope for you to be able to treat both diseases successfully!

<3 Lolly
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Sept.'99 - Dx.Stage IIIB, IDC ER/PR-, HER2+++ by IHC, confirmed '04 by FISH. Left MRM, AC x's 4, Taxol x's 4, 33 Rads, finishing Tx May 2000. Jan.'01 - local/regional recurrence, Stage IV. Herceptin/Navelbine weekly till NED August 2001, then maintenance Herceptin. Right Mast. April 2002. Local/Regional recurrence April '04, Herceptin plus/minus chemo until May '07. Gemzar added from Feb.'07-April '07; Tykerb/Abraxane until August '07, back on Herceptin plus Taxotere and Xeloda Sept. '07. Stopped T/X Nov. '07, stopped Herceptin Dec. '07, started Avastin/Taxol/Carboplatin Dec. '07. Progression in chest skin, stopped TAC March '03, started radiation.

Herceptin has served as the "Backbone" of my treatment strategy for over 6 years, giving me great quality of life. In 2005, I was privileged to participate in the University of Washington/Seattle HER2 Vaccine Trial.
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Old 01-25-2008, 06:26 AM   #19
Believe51
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Posts: 2,999
Smile Ohhhh Doug....

It is me (laughing and smiling) Marie....Believe51, not Healthy 51...You have given me a wonderful cleansing laugh this morning My Friend, one that I needed to start my day off with. (Still chuckling) I will send all those gifts to you at somepoint today and it will be my pleasure since I wanted to already do this for you. You sound well and I just want to say one more time I am so happy you found us. The information you receive helps to arm you with ammo you take to your doctor's...the support you take to your heart. You will get my e-mails today with the name Believe51 on them....(Still smiling) and I advise you to make sure your e-mail is cleaned for you shall be showered with information. Aren't these friends here amazing??? Eww, I love them all!! I am so excited to be able to help!>>Believe51..Marie G
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9/7/06Husband 50yrs=StageIV IBC/HER2+,BoneMets10/06TaxotereX10,'H'1X wk,Zometa,Tamoxifen4/12/07Last Tax5/18/07Pet=Rapid Cell Activity,No Organ Mets,Lytic Lesions,Degeneration,Some Bone Repair5/07ChemoFail6/01/07Pleural Thoracentisis=Effusions,NoMalignantCells6/19/07+7/2/07DFCI
6/25/07BrainMRI=BrainMets,Many<9mm7/10/07WBR/PelvisRad37.5Gx15&Nutritionist8/19/07T/X9/20/07BrainMRI=2<2mm10/6/07Pet=BoneProgression
10/24/07ChemoFail11/9/07A/Cx10,EndTam12/7/07Faslodex12/10/07Muga7512/13/07BlasticLesions1/7/08BrainMRI=Clear4/1/08Pet=BoneImprovement,
NoProgression,Stable4/7/08BrainPerfect5/16/08Last A/C8/26/08BrainMets=10(<9mm)9/10/08Gamma10/30/08Met=5mm12/19/08Gamma5mets5
12/22/08SpinalMets1/14/09SpinalRads2/17/09BrainMRI=NoNewMets4/20/09BoneScan5/14/09Ixempra6/1/09BrainMRI=NumerousMets6/24/09DFCIw/DrBurstein6/26/09Continue
Ixempra/Faslodex/Zometa~TM now lower7/17/09Stop Ixempra By Choice9/21/09HOSPICE10/16/09Earned His Deserved Wings And Halo=37 Month Fight w/Stage 4 IBC, Her2+++,My Hero!!
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