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Old 07-27-2007, 04:43 PM   #1
Her2Sue
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Unhappy Help!!!!

Hey Ladies,
I need advice! I am er+ pr totally negative Her2+. Diagnosed IDC Nov 20, 2006. I have just completed radiation yesterday. I had chemo first (completed April 4th), Lumpectomy May 1. Now I have to decide about Hormone therapy.
My issue is I was on Paxil for 10 yrs. I found out in March that Tamoxifen does not work with Paxil. I weaned down starting in April and took my last dose on July 9th. My Onc suggested after checking my blood work that shows I am (right now) in menopause, that I do Femera and we keep an eye on my blood work every 3 months. I am scared to death here! I am having panic attacks again!! I go to bed every night shaking!! My mind is continously spinning! I cry at least once a day! So as you can see I am going to have to get back on some type of antidepressant or something. I feel like I am losing my mind! Please if anyone can relate let me know! Somedays I feel like I am gonna end up in the nut house!
Thank you
Susan
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Old 07-27-2007, 05:25 PM   #2
Becky
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Don't go crazy yet! At least wait until you don't know that you are.

I am like you ER+ and PR-. To be sure, I had an oophorectomy (because I was 46 and although my bloodwork said I was postmenopausal, I ended up getting my period back alittle over 6 months after my last Taxol). I wanted to be on an AI (on Arimidex now) because there was no study that said if you were ER+ (only 50% for me) and PR neg that Tamoxifen did any good whatsoever.

Whatever you do - don't freak. My second opinion onc at Sloane Kettering said to do exactly what your onc is going to do - check the bloodwork every 3 months. Check estradiol, FSH and LH without fail. If you spike enough to be deemed "not in menopause" get Lupron or Zoladex shots (depending on your current age, you might want to do that anyway and then you "really" will be in menopause). Also, its NOT a big deal to come out of menopause (and then take the shots or get an oophorectomy). It is not dangerous to be exposed to estrogen for a couple of weeks (hence the frequent testing). It is what happens in the long term that matters more.

Ask any other questions you might have on this.

Have a nice weekend.
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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 07-27-2007, 05:51 PM   #3
tousled1
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Sue,

Have you checked with your oncologist or primary care physician about the possibility of going on an antidepressant other than Paxil. You would have to be weaned off the Paxil before beginning a different antidepressant. After my son passed away in 2002 I started taking antidepressants and I switched 3 times. I stopped taking them shortly before my diagnosis with breast cancer and so far have not had to go back on them.
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Stage IIIC Diagnosed Oct 25, 2005 (age 58)
ER/PR-, HER2+++, grade 3, Ploidy/DNA index: Aneuploid/1.61, S-phase: 24.2%
Neoadjunct chemo: 4 A/C; 4 Taxatore
Bilateral mastectomy June 8, 2006
14 of 26 nodes positive
Herceptin June 22, 2006 - April 20, 2007
Radiation (X35) July 24-September 11, 2006
BRCA1/BRCA2 negative
Stage IV lung mets July 13, 2007 - TCH
Single brain met - August 6, 2007 -CyberKnife
Oct 2007 - clear brain MRI and lung mets shrinking.
March 2008 lung met progression, brain still clear - begin Tykerb/Xeloda/Ixempra
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Old 07-28-2007, 04:02 PM   #4
Her2Sue
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Hi Ladies,
I have been off of Paxil for 3 weeks and I am miserable. I can't sleep, shake all the time and so scared! Anxiety is very high! Now I am afraid I am gonna die from this anxiety! I see psych dr monday and I am gonna see if I can go back on Paxil at least to stabilize some! (I have been weaning since April)
I am not sure if what I am feeling is ALL from Paxil, or if some of it is from this cancer journey. I just don't know! It is frustrating. Do our hormones change from all of this? Could that be contributing to this time I am having?
Susan
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Old 07-28-2007, 05:03 PM   #5
Lolly
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Susan, I know that anxiety and stress levels sometimes increase when active treatment for bc is finished, which is strange but understandable. Now you're "done" doing what you can to fight the cancer, and it's an adjustment to find yourself again. Also, hormones being out of whack doesn't help.
Just try to take it one day at a time, and your psych doc should be able to make some suggestions for alternate temporary meds if Paxil is no longer appropriate.
I started an anti-depressant(Celexa) when I had recurrence, and have been on it for 7+ years. No bad side effects, just much easier to have a good day now
Hang in there and let us know how it goes Monday.

<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 07-28-2007, 08:39 PM   #6
Bev
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Hi Susan, Zoloft works for me and was able to do it while on H and Tamox. Somehow I think Hormones and chemical imbalances cause anxiety and having BC sure doesn't help. Bev
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Old 07-28-2007, 11:56 PM   #7
Donna
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Hi Susan,

I personally swear by Effexor XR - tried EVERYTHING - before under different circumstances - and this is the one that works for me. I am taking Arimidex and Effexor and have no problems. The Effexor just takes the edge off so I have a shot at having a great day. Would Paxil be okay to take if you are not going on Tamoxifen, I wonder?

Also, are you sure you weaned off slow enough? If not, you can be left with fewer serotonin receptors or re-uptake sped up which would leave you worse than before you took them.

Careful going, living with anxiety is no life at all!

Best to You, Donna
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Old 07-29-2007, 06:06 AM   #8
Her2Sue
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Unhappy Off to the ER

I woke up this morning head is burning! Inside burning called psych dr who is monitoring me for stopping Paxil and Oncologist. Both told me to go to ER and have it checked, I am scared! Waiting for my Mother in law to come take me. Will post back when I know more. If this is nothing, I am going back on Paxil, to see if this goes away!
Susan
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Old 07-29-2007, 07:48 AM   #9
R.B.
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I must stress that you must talk to your advisor about diet if it is of interest.

Omega threes and particularly DHA and EPA are reported as being beneficial in a number of cognitive disorders including depression.

They can be included as part of a dietary regimen as an adjunct to treatment or on their own

The brain needs DHA and EPA to function properly. If you do not eat it one way or another you do not have it in your body. The body cannot make the mother omega three.

If you search using the above click on search etc you should find some posts.

Fish oil is the best source of long chain omega threes, 2grams a day of DHA is the level in a trial at which uptake dropped off. Please talk to you advisor as causes blood thinning which is an issue for some etc.

This is a useful book

http://www.amazon.co.uk/Brain-Buildi...720125&sr=1-28

If you need more please come back.


RB
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Old 07-29-2007, 05:49 PM   #10
Audrey
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(((Her2Sue)))--so sorry to read your latest post--I just wanted to share that I have been taking Paxil for about six years (since my bc diagnosis) to relieve anxiety and panic attacks. I recently thought that I no longer needed to be on Paxil, so I tried to wean myself off of it, but was so miserable--I kept having this "zapping" sensation in my head, like a shock and felt so bad that I decided to just keep on taking it, even though I don't really think I need it any more...I know how hard it is to try to get off of this drug--I hope you are able to switch to another anti-depressant that works well with your other bc drugs--just wanted you to know that I'm pulling for you and sending you my best wishes during this latest ordeal.
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Audrey

diagnosed July 2001, at age 36
large tumor, 11+ nodes
Stage IIIb, er/pr-, Her2+
treated with A/C, weekly Taxol
radiation, + year of Herceptin
on clinical trial. double mastectomy
followed by reconstruction
NED!!
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Old 07-30-2007, 02:43 PM   #11
StillHere
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HER2SUE, I was on Zoloft before dx (low grade chronic depression) and changed to Effexor XR to try to calm hot flashes down abit. I can feel your anxiety right through the screen. Hope ER visit was beneficial and that you came home with some new amunition to fight off the shakes. I have also been on Tamoxifen for 1.5 yrs even though I never had a period after chemo. I tried Arimidex for 2 mos and discontinued due to QOL issues. I may try AI again w/ estring or estrogen cream.
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04/05 Onset 49, DCIS, solid, Hist 2/3, Nucl 2/3, 7cm R Brst
04/05 E & P + HER2+++
05/05 Mediport
05/05 Cytoxan & Adriamycin every 3wk x4
08/05 Taxol every 2wk x 4, Herceptin every wk x1yr
10/05 Bilat Mast - my Choice
10/05 3/19 lymph nodes Pos, Stage IIIa
11/05 Rad x 37 Rx, R Brst & Axcilla
02/06 Herceptin stopped (L vent HF 40)
03/06 Started & Stoped Arimidex after 2 mos.-QOL side effects
05/06 Started Tamoxafin
06/06 Bilat Free Flap Reconstruction
12/06 Cardiomyopathy reversed-HF normal
01/07 Bilat Saline Implants
07/07 CA 27-29 steadily rising from 28 in 12/06 to 46 in 7/07
07/07 PET Scan NED, but inflamation at prev surg site.
09/07 Started Femara
10/07 CA 27-29 down to 39
06/08 CA 27-29 down to 32
09/08 Lg joint pain & QOL side effects from Femara, will live w/ to keep CA markers within normal range.
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