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Old 04-05-2016, 02:22 PM   #1
spiritualabundance
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Starting Tamoxifen 5 months after starting Herceptin. I thought I took this after H..

...was over.

I didn't think I was supposed to start this until after the year of Herceptin was done but my Onc ordered it today for me to start. I'm pretty bummed because I'm not ready for the side effects and hoped to get my body in shape in preparation to fight the weight gain side effect.

I haven't had my menstrual cycle since December and my Onc tells me that on Tamoxifen if I begin to bleed then we need to do testing to check for uterine cancer. Does this mean that I might possibly never have another period again?

Also, I was hoping the double/blurry vision from the chemo might clear up before starting T, which lists blurry vision as a possible se.

What side effects did you have on T? Please share your thoughts and stories. Good or bad, they always help.

Bless you. Thank you.
__________________
6/6/2015-Found a lump in my L breast at 45 years young.
6/12/2015-First u/s
7/2015-Mammogram and 2nd u/s (same day)
8/7/2015-Needle aspiration u/s biopsy. Doctor indicated looked malignant. (thanks doc!! the wait after that sucked)
8/20/2015-Diagnosed w ER+,PR+,HER2+ BC in L breast (now 46 years young.)
9/24/2015-Saw first surgeon, referred by oncologist. Great guy. Office staff not advocates.
10/12/2015-Met w Plastic Surgeon. Amazing doctor. Recommended not immediate due to chemo and 'just get the cancer out first' attitude. Will do recon with him after chemo is complete.
10/12/2015-Called first surgeon's office who told me that it's been too long since the first consult and will need to schedule another consult on 10/24 and then schedule surgery within 2-3 AFTER that date. (BITE ME)
10/12-Found a new surgeon.
10/15-Consulted with new FEMALE surgeon. She was AMAZING! Asked me if I wanted to do the surgery on Monday (in 5 days). Stunned and thrilled!!
10/26/15-Surgery for bilateral mastectomy, port placed, and 3 nodes removed for SNB. 3 drains installed.
10/28/15-home from the hospital to recover.
10/30/2015-Follow up with surgeon. Drains removed. Was told tumor was removed but had more than doubled in size from 1.3 to 2.9cm. 3 nodes removed, all negative. Healthy breast was clear but several suspicious areas on affected left breast. Looks to be Stage 2A. Oncologist appt next week.
11/5/2015-Follow up with oncologist. Planning to start chemotherapy (Herceptin, Taxotere, and Carboplatin together beginning November 30th). Very nervous about side effects, low white blood count, anemia, steriods, etc, etc, etc. I'm not usually one to medicate myself for anything. Not ready for this. Kinda scared.
11/30/2015 - Isaiah 41:10 today for sure. Today was my first day (round) of TCH chemo treatment. Before receiving the cocktail, I saw the doctor who delivered the news that my CT scans (abdomen, chest, and pelvis were all clear). Praise God!! Feeling okay right now after chemo, just a bit sleepy. We'll see how the Neulasta, along with the other effects, rear their lovely heads over the next few days. Prayers please, as always.
12/17/2015-Decided it was time to shave my head and face the music.
1/11/2016-Went in for 3rd treatment. UGG. Spoke to the doctor first. Asked him to reduce the Decadron. Agreed! From 10mg to 4mg dosage. YAY! It still worked and I was able to rest and live. Praise God. I jokingly told him if he felt like dropping some of my treatment, to feel free. Guess what?! He agreed! Agreed to drop my 6th treatment meaning that I now only have 2 left and in March I'll be able to begin the reconstruction process. Additionally, he agreed to schedule me for a brain MRI to just double check for any spread. Anxiously awaiting.
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Old 04-05-2016, 05:22 PM   #2
LeahM
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Re: Starting Tamoxifen 5 months after starting Herceptin. I thought I took this after

Well, like everything we take to rid ourselves of cancer Tamoxifen side effects can be different for everyone. For me they are not bad at all. Achy joints mostly. I began Tamox the second rads was done and 6 months before my last Herceptin.
My periods stopped during chemo and came back a month after starting Tamox (Feb 2013). They were wonky tho so in Jan 2015 I had my uterus removed.
My vision blurred during chemo too, but it is fine now, and has been for a long time.
Know what I told myself during all my treatments? "I choose to do this, and I can choose to stop". Taking that dam pill daily is my CHOICE. I don't have to take it and once in a while I get pissed at everything I have been thru so to spite my face I bite off my nose and stop taking Tamox. I usually get a hold of myself pretty quick and swallow a pill.
But it is always my CHOICE! Like decreasing your Decadron (I did that too, after the very first dose) and stopping chemo after 5.
You've got to swallow that pill to see if it affects you poorly.
Good luck!
Best
Leah
__________________
39 year old wife, mother of one and nurse.
April 20, 2012: Dx Invasive Ductal Carcinoma
April 25, 2012: ER+(5%), PR-, HER2+++
May 10, 2012: BRCA 1,2 Negative
May 23, 2012: MUGA Scan EF 70%
May 31, 2012: B/L Mastectomy. 2/2 nodes removed and CLEAR!! Power Port placed. 2 Drains. 2 Expanders placed
June 5, 2012: Drains OUT! Ahhhh..
June 12, 2012: Final Pathology Report, .8x.3cm tumor. Micromets to 1 node .35mm under cytokeratin staining. Stage 2A. Onc says "you are lucky to have found this early"
July 10, 2012: Started 6 rounds of TCH with weekly H
Sept 5, 2012: MUGA 65%
Sept 20, 2012: CAT scan of brain clear!
Oct 23, 2012: LAST TC! AMEN! Continue Herceptin every three weeks until July 2013.
Nov 19, 2012: Port out!
Dec 5, 2012: Started radiation
Dec. 10, 2012: MUGA 65%
Dec. 13, 2012: Turned 40. BEST BIRTHDAY EVER!
Jan 23, 2013: Last radiation. Told I am NED. Continue Herceptin every three weeks till July 2013.
Jan 29, 2013: Begin 5 years of Tamoxifen.
Feb 28, 2013: CT Scan with Contrast of lungs. 5mm and 4mm nodules of unknown origin. Rescan in 3 months.
Mar 6, 2013: EF 60%
May 8, 2013: Exanders out, implants implanted...abd. lipo and fat moved up. Girls are looking good!
June 3, 2013: CT Scan with Contrast of lungs. Previous nodules gone. New nodules (2mm and 3mm) found. Rescan in 3 months. So sorry I opened this can of worms...
June 11, 2013: EF 60%
June 25, 2013: Last Herceptin. wow...
Aug 20, 2013: Tumor markers within normal limits. Xray to sore left ribs shows no disease or fractures.
Sept 9, 2013: CT of lungs shows no disease. Closing this can of worms and moving on.
Nov 20, 2013: Tumor markers within normal limits. Severe Vit D deficiency, started on prescription Vit. D. Blaming chemo for this.
Feb 2014: Tumor markers within normal limits.
May 2014: Tumor markers within normal limits. Graduated to twice yearly onc appts.
Oct 2014: Tumor markers within normal limits.
May 2015: Tumor markers WNL. Bone density scan fine. Bone scan and xray of ribs shows "something" 4th right rib. Could be healed fracture but if it is healed why does it hurt?
Nov 2015: Tumor markers WNL. Follow up bone scan clear.
Feb 2016: Syncope! WTF? Dizzy too. Brain scan clear, ECHO EF 60%, Halter Monitor shows heart is fine. Viral? I will never know.
June 2016: Tumor markers WNL.
Oct 2016: Stabbing pain right eye. Long story short, trigeminal neuralgia.
Nov 2016 Brain MRI clear.
Jan 2017: Tumor markers WNL, still getting weird pain right rib area, and sometimes right upper chest. Xray x2, Bone Scan, Breast MRI all clear. Scar tissue? Rads. I may never know.
www.onmywaytosurvivorhood.blogspot.com
www.thechemobag.com
www.facebook.com/thechemobag
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Old 04-05-2016, 05:30 PM   #3
jaykay
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Re: Starting Tamoxifen 5 months after starting Herceptin. I thought I took this after

My side effects were a few hot flashes (I was post menopausal) and sore legs due to water retention. I took diuretics every other day and also took a baby aspirin a day which helped with the leg pain. Also gained about 5lbs.

I hated tamoxifen but stayed on it for 4.5 years and then switched to Letrozole.

Tamoxifen is typically given to pre-menopausal women. Chemo will affect your menstrual cycle and there are a lot of women on this board who got their period after a certain amount of time after chemo. Everyone is different but they do like to start anti-estrogens after chemo and radiation if applicable.

Just keep telling yourself to be thankful that there are drugs to keep the beast at bay.

Best

Janis
__________________
March, 2000: 48, Post menopausal (5 yrs HRT) Left breast, IDC 3mm/DCIS 1.6cm, ER+/PR-/Her2+++, mod differentiated, MIB low, lumpectomy, node neg via SNB, rads=33 Stage 1a
June, 2000: Tamox 4.5 years,Femara for 5 years (end in Jan. 2010)
Sept, 2012: 61, Via mamm, ultrasound, biopsy, right breast, 2.3cm tumor, ER+/PR-/Her2+++, poorly diff, KI67 60-70%
BRCA 1 and 2 negative
October, 2012: Bi Mast with tissue expanders, port placement
Final Path: IDC 2.8cm, DCIS, 1/4 sentinal nodes positive (@#$%). Stage IIB
Nov 29, 2012: Begin TCH/6x/every 3 wks, H for 1 year/every 3 weeks.
March 14, 2013: Finished chemo
April 9, 2013: Begin radiation 28x
May 22, 2013: Finished rads
June 1st, 2013: Started Aromasin for 5 yrs.
July 15, 2013: Switched to Letrozole (Femara). Probably for the rest of my life
October 16, 2013: Exchange surgery
October 31, 2013: Finished Herceptin
December 5, 2013: Port removed
Glad this year is over!
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Old 04-06-2016, 07:35 AM   #4
snolan
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Location: El Paso ,Tx
Posts: 436
Re: Starting Tamoxifen 5 months after starting Herceptin. I thought I took this after

I started Tamoxifen after I finished chemo, I did 5 yrs and just came off of it. No real side effects for me. I chose to do only the 5 years as I was only Stage I, my Dr felt confident that I only needed the 5 but if I wanted I could have done the 10 yrs.
__________________
dx: DCIS 6/8/10, HER 2+ 7/26/10; Stage I Age 41
Double mast w reconstruction
6 TCH w 1yr herceptin
Tamox.
25 radiation tx
Removal of expander on L due to infection. Tried to save it had 3 bouts of antibiotics and went to see plastic surgeon 2-3x wk to get drained. Saving it was my idea not his. But lost it anyway.
Reconstruction set for December 21st,2011
Finished chemo 12/2010
Finished Herceptin 8/26/11
Reconstruction 12/21/11
Expanders exchanged for silicon 3/19/12
Nipple reconstruction 5/18/12
Nipple tatooing- 7/9/12- All done yay!
11/22/12-Went back to get scar tissue stretched to even the outside of breast, didn't work due to it being radiated skin.
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Old 04-06-2016, 02:57 PM   #5
Becky
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Re: Starting Tamoxifen 5 months after starting Herceptin. I thought I took this after

I started tamoxifen right after radiation was over. I actually had Herceptin and got my ovaries removed in order to take Arimidex all while on Herceptin. These drugs are normally started as soon as chemo ends (if you don't need radiation) Or after rads are done of you need that too. It is good to take these together as you are shutting down the hormone receptors and the her2 receptor simultaneously.
__________________
Kind regards

Becky

Found lump via BSE
Diagnosed 8/04 at age 45
1.9cm tumor, ER+PR-, Her2 3+(rt side)
2 micromets to sentinel node
Stage 2A
left 3mm DCIS - low grade ER+PR+Her2 neg
lumpectomies 9/7/04
4DD AC followed by 4 DD taxol
Used Leukine instead of Neulasta
35 rads on right side only
4/05 started Tamoxifen
Started Herceptin 4 months after last Taxol due to
trial results and 2005 ASCO meeting & recommendations
Oophorectomy 8/05
Started Arimidex 9/05
Finished Herceptin (16 months) 9/06
Arimidex Only
Prolia every 6 months for osteopenia

NED 18 years!

Said Christopher Robin to Pooh: "You must remember this: You're braver than you believe and stronger than you seem and smarter than you think"
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Old 04-07-2016, 01:22 PM   #6
tricia keegan
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Re: Starting Tamoxifen 5 months after starting Herceptin. I thought I took this after

I was only on Tamox for a short while during Herceptin so had no side effects that I noticed but did the same as Becky and had my ovaries removed in order to take Arimidex and continued that for eight years.
__________________
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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