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Old 01-04-2012, 06:55 AM   #21
Lien
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Re: Tamoxifen anxiety

Hi Raquel,

Both tx will have the menopausal effects. Side effects vary with different people and there's no way of predicting how it will be for you. I did the shots & Arimidex and was mostly fine. I was 44 at diagnosis, and premenopausal. It was doable for me. After 5 years on ovarian suppressor my periods came back at age 50. By that time I thought the advantages of doing ovarian suppression outweighed the hassle of once again having periods.

Jacqueline
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Diagnosed age 44, January 2004, 0.7 cm IDC & DCIS. Stage 1, grade 3, ER/PR pos. HER2 pos. clear margins, no nodes. SNB. 35 rads. On Zoladex and Armidex since Dec. 2004. Stopped Zoladex/Arimidex sept 2009 Still taking mistletoe shots (CAM therapy) Doing fine.
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Old 01-04-2012, 07:42 AM   #22
jane2638
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Re: Tamoxifen anxiety

Dear Jacqueline,

Do you attribute the back pain to the AI? Is it better now you've stopped? What is PMA - pilates?

Thanks a lot!
Jane
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Old 01-04-2012, 08:17 AM   #23
Lien
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Re: Tamoxifen anxiety

Hi Jane,

No, the back pain is something that I had on and off most of my adult life. It got worse after rads, because I had to lie still in a very uncomfortable position. I did get some stiffness with the AI, but that subsided gradually.

PMA is a coaching technique. For more info: http://general.pmainstitute.com/pages/what-is-pma.php

I understand why you would want to know as much as possible about the side effects of these meds. Unfortunately, experience has taught me that there is no way of predicting whether you will or will not have these side effects. It is mostly a matter of trial and error. I hope you are as lucky as I was and will have very few side effects.

Love

Jacqueline
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Diagnosed age 44, January 2004, 0.7 cm IDC & DCIS. Stage 1, grade 3, ER/PR pos. HER2 pos. clear margins, no nodes. SNB. 35 rads. On Zoladex and Armidex since Dec. 2004. Stopped Zoladex/Arimidex sept 2009 Still taking mistletoe shots (CAM therapy) Doing fine.
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Old 01-05-2012, 06:28 PM   #24
alli98
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Re: Tamoxifen anxiety

Hi everyone -- im very confused about the tamoxifen vs ooph issue. I had bmx, 4 AC, and am on 8 of 12 taxol. Onc recommends tamox. Im 41. But I have been reading so many posts the last few days of women my age who get an ooph and then go on an AI. My onc also didnt say anything about tamox being less effective on her2+ patients, which I have also seen mentioned on boards. Does it vary from doctor to doctor, or is there a general standard for er+pr+her2+? Is there really proof that tamox will not work well if you are her2+? Thanks.
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DCIS & IDC dx 6/11. 1.4cm, er+ pr+, her2+. Bmx. 8/11, SNB 0/4. AC x 4, taxol & herceptin x 12. Herceptin til 11/2012.
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Old 01-05-2012, 06:30 PM   #25
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Re: Tamoxifen anxiety

Forgot to say, im also getting herceptin with taxol & will continue herceptin for a year.
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DCIS & IDC dx 6/11. 1.4cm, er+ pr+, her2+. Bmx. 8/11, SNB 0/4. AC x 4, taxol & herceptin x 12. Herceptin til 11/2012.
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Old 01-09-2012, 07:41 AM   #26
jane2638
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Re: Tamoxifen anxiety

Hi Alli,

My impression is that her2+ is more likely to be resistant to Tamox than her2-. I've also seen the opinion that inducing menopause yields better outcomes. However, AIs have not been approved for premenopausal women in the U.S. I guess this means that if you want an alternative to Tamox, you either have an oophorectomy straight out, which seems pretty brutal, or use an LHRH agonist, then have an oophorectomy, then go to an AI. I think an LHRH agonist can also be combined with Tamox. I'm still grilling my onc about all this.

Cheers,
Jane
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Old 01-09-2012, 06:23 PM   #27
alli98
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Re: Tamoxifen anxiety

Hi Jane - I too will be asking many more questions of my onc on this topic when I see her again in a few weeks. I'm getting closer to finishing taxol/herceptin and really need to feel comfortable with the next steps, other than the continuance of herceptin every 3 weeks. I will post any additional info I get, and would love to hear what your onc says to you about the HER2+/tamoxifen issue. Seems some HER2+ pre-men women do just tamox, without the ooph or suppression shots (side effects of Lupron & Zoladex sound awful). Wish there was a clear answer as to what is best for avoiding recurrence, which is what we all want. Thanks, Alli
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DCIS & IDC dx 6/11. 1.4cm, er+ pr+, her2+. Bmx. 8/11, SNB 0/4. AC x 4, taxol & herceptin x 12. Herceptin til 11/2012.
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Old 01-10-2012, 05:33 PM   #28
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Re: Tamoxifen anxiety

I had heard that if you do an ooph, you will still have some of the side effects of tamoxifen, only this time they are permanent. At least, with tamox, you can stop.

Not that I recommend it. I took tamoxifen and had every side effect you all are afraid of. I ended up on oxycontin for the joint pain. But, if it had worked I'd have gladly taken it for the five years. Only a few months after I ended up with mets.

I'd rather have the SEs than mets, that's for sure!
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08/17/09 Dx'd.
Multifocal/multicentric IDC, largest 3.4 cm, associated ADH, LCIS, DCIS
HER2+ ER+/PR- Grade 3, Node Negative

10/20/2009: Right mastectomy, reconstruction with TE
12/02/2009: Six rounds TCH, switched to Taxol halfway through due to neuropathy
03/31/2010: Finished chemo
05/01/2010: Began tamoxifen, the worst drug ever
11/18/2010: Reconstruction completed
12/02/2010: Finished herceptin
05/21/2011: Liver Mets. Quit Tamoxifen
06/22/2011: Navelbine/Zometa/Herceptin
10/03/2011: Liver Resection, left lobe. Microwave ablation, right lobe - going for cure!
11/26/2011: C-Diff Superbug Infection, "worst case doctor had seen in 20 years"
03/28/2012: Progression in ablated section of the liver - no more cure. Started Abraxane, continue herceptin/zometa
10/10/2012: Progression continues, started Halaven, along with herceptin and zometa.
01/15/2013: Progression continues, started Gemzar and Perjeta, an unusual combo, continuing with herceptin and zometa
03/13/2013: Quit Gemzar, body just won't handle it. Staying on herceptin, zometa and perjeta.
04/03/2013: CT shows 50% regression in tumor, so am starting back on Gemzar with dose reduction, staying with perjeta/herceptin/zometa. Can't argue with success!
05/09/2013: Discussing SBRT with Radiology due to inability of bone marrow to recover from chemo.
06/07/2013: Fiducial placement for SBRT
07/03/2013: Chemo discontinued, on Perjeta, Herceptin and Zometa alone
07/25/2013: SBRT (gamma knife) begins
08/01/2013: SBRT completed
08/15/2013: STABLE! continuing with Perjeta, Herceptin, Zometa
06/18/2014: ***** NED!!!!***** continuing with Perjeta, Herceptin, Zometa
01/29/2014: Still NED. continuing with Perjeta, Herceptin. Zometa lowered to every 3 months instead of monthly.
11/08/2015: Progression throughout abdomen and lungs. Started TDM-1, aka Kadcyla. Other meds discontinued. Remission was nice while it lasted.

5/27/18: Stable. Kadcyla put me right back in the barn. I have two teeny spots on my lungs that are metabolically inactive, and liver is clean.

I’m beating this MFer. I was 51 when this started and had two kids, 22 and 12. Now I’m 60. My oldest got married and trying to start s family. My youngesg graduates from Caltech this June. My stepdaughter gave me grandkids. Life is fantastic.
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