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Old 06-29-2008, 12:30 AM   #1
tdonnelly
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Checking in

Her2 friends,
Had my last treatment June 23 to date my body again is refusing to let me sleep - serious thyroid interaction-as I posted prior 10/2006 ER/Near Stroke 16 days no real sleep and had to be hospitalized for 17 days to recoop and adjust sleep cycle.

Since 06/23/08 maybe 15 hrs no real deep sleep. Checking myself into ER today to see what is happening to me again. Sleeping pills are not the answer in my case-Last Hospital stay I required a shot not sure what it was to put me asleep for three days or so.

Tamara
Invasive Ductal Carcinoma 10/2006
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Old 06-29-2008, 04:14 AM   #2
Mary Jo
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Wow Tamara,

I can't imagine not being able to sleep for such a long time. You poor thing. I hope they can figure out why that happens to you.

It was nice of you to check in. Thanks for doing that.

Love & Peace to you ...

Mary Jo
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"Be still and know that I am God." Psalm 46:10

Dx. 6/24/05 age 45 Right Breast IDC
ER/PR. Neg., - Her2+++
RB Mast. - 7/28/05 - 4 cm. tumor
Margins clear - 1 microscopic cell 1 sent. node
No Vasucular Invasion
4 DD A/C - 4 DD Taxol & Herceptin
1 full year of Herceptin received every 3 weeks
28 rads
prophylactic Mast. 3/2/06

17 Years NED

<>< Romans 8:28
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Old 06-29-2008, 07:46 AM   #3
CindyE
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Tamara,
So sorry to hear about your situation with sleeping. Hopefully the doctors will be able to help you at the hospital. I'm sure they can give you something so that you can sleep and begin to feel better soon. Take care and I will be thinking and praying all goes well.

Cindy
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L/IDC, 1.2 cm, Stage 1, Her2+, ER+/PR+ at age 48
4/15/2008 Lumpectomy + sentinel node biopsy
Margins neg and Nodes neg (2 tested)
MUGA score 55 on 5/6/2008

Treatment starting 05/08/2008:
Chemo 4 cycles, 3 weeks apart with Taxotere & Cytoxan - Chemo - Done 7/24/2008!
Herceptin for 1 year
Radiation starting in 9/2008
MUGA score 61.9 on 9/04/2008
33 Rads with boost - Done 10/13/2008
MUGA score 58 on 12/01/2008
MUGA score 59 on 3/16/2009
Herceptin for 1 year - Done 4/27/2009
MUGA score 64 on 6/22/2009
All scans - NED 6/24/2009
MRI - NED 11/10/2009
All scans - Still NED 8/25/2011
Still NED 2024!



I am calling this my pink journey
Follow my journey into the pink at my blog here

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Old 06-29-2008, 08:50 AM   #4
karen z
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Tamara,
I am glad that you decided to get some help. We will be thinking about you and sending along our prayers for rest and sleep. Let us know how you are doing.
karen
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Old 06-29-2008, 10:09 AM   #5
CLTann
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Ask your doctor to look at your thyroid function. Too active thyroid will put one on edge and wide awaking. Do you have fast heart beat and sweating? These are major symptoms. You need to slow down in the body functions.

Ann
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Stage 1 dx Sept 05
ER/PR positive HER2 +++ Grade 3
Invasive carcinoma 1 cm, no node involvement
Mastec Sept 05
Annual scans all negative, Oct 06
Postmenopause. Arimidex only since Sept 06, bone or muscle ache after 3 month
Off Arimidex, change to Femara 1/12-07, ache stopped
Sept 07 all tests negative, pass 2 year mark
Feb 08 continue doing well.
Sep 09 four year NED still on Femara.
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Old 06-29-2008, 01:45 PM   #6
tdonnelly
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Hi All,
My meds: Levothyroxine 175 mcg/purple pill. Last TSH was normal. I am having hot flashes/sweats, vision problems, breathing is rough. My heart is really working to his capacity-too stessed. To date: 22 hrs of crappy sleep. My body will not let me rest. Its not stress related-bc has taught me to handle alot. My local CVS Pharmacist put in an urgent call to my Primary to suggest 2 day supply for Sleep. I am on standby to local ER should this not work. Thank you for your replies. Take Care.
Tamara
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Old 06-30-2008, 03:23 PM   #7
tdonnelly
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6/30/08 Update since last Herceptin:

In the past 8 days I should have slept at least 56 hours; my body has only allowed 29 hrs. Last night was the first night I had 5 straight hours of sleep (still waiting for dr.'s to order Sleep meds-they too are trying to understand and figure this out. I am at home by choice; hangn in there.

I have no real appetite, excessive thirst, vison-blurry at times, pain at thyroid surgery site, I can feel blood in heart pool and disperse(new for me) bowels and urine OK for a change, there is a slight pressure across chest area (side to side)and occasional burning in my lungs (had this after Rads which subsided)

On a brighter note I took a slow but nice walk around the neighborhood. Tried to nap again-can't. Too many thoughts. I am concerned about who mixed my Infusion and were there mistakes made that no one is talking about. All I get to see is a clear bag-looks like water to me.

I hope this ends soon and I can get on with my life. I took the day off work today, will try and work tomorrow. I worked all last week-miracle in itself how I can keep going.

For all HER2 with thyroid disease and Herceptin our doctors need to listen and pay close attention this is serious stuff. My CVS Pharmacy is getting concerned as we wait for Doctors thoughts on the matter. I cant really walk into an ER-I don't have insurance-to date my bill has got to be through the roof. Take Care.
Tamara
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Old 07-02-2008, 01:10 PM   #8
Believe51
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Unhappy Uggh!

Tamara, I have been thinking of you while you are on your quest for sleep and normalcy. Hoping they figure this all out for you very soon and that you are feeling better with each day. Keep hanging in there, Sweetie>>Believe51
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6/25/07BrainMRI=BrainMets,Many<9mm7/10/07WBR/PelvisRad37.5Gx15&Nutritionist8/19/07T/X9/20/07BrainMRI=2<2mm10/6/07Pet=BoneProgression
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Old 07-02-2008, 08:44 PM   #9
tdonnelly
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As I continue my daily activites my body is slowing allowing me more sleep-up to 41 hours since 6/23. I worked the last two days-part time it has been hard. I can feel the stress that this episode has put on my heart. Time for another Muga for sure. My Primary ordered a prescription for Restoril 7.5 mg yesterday; I have yet to take-hoping my body will return to normal on its own. Plus I am afraid of more side effects-dont need to add to the list. I will try one tomorrow as I am off work and can rest at home as I see how my body reacts to this new med. I did sleep 4 hrs lastnight and took 3 hr nap after work. Fresh air and exercise are helping. This has been very scary.I too continue to pray for sleep and normalcy. I am at high risk for Heart Disease from my own family history; I am over-weight, high chloresterol, smoker, etc. now adding Herceptin to my body. Sudden cardiac arrest is always in the back of my mind as I try to go forward. Thank you for continued support. Take Care
Tamara
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Old 07-03-2008, 09:36 AM   #10
tdonnelly
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I took new sleep med lastnight-I didnt look on web for past history of med-said a prayer instead. I am happy as I received 9 hrs (first time) of deep sleep. I did wake once in the night to use the bathroom; wasnt wozy and quickly returned to sleep.
Still feeling physical stress of all this. Hanging in there.

I dont have a Care Page-for my large extended family who looks at my posts here and at Komen; I am not at home posting side effects that are not real, this isnt a fairy tale or reaching out for sympathy or pity. All of you need to educate yourselves on the serious of this disease. I am working on a FAMILY BINDER as the first with Breast Cancer. All of my doctors, nurses and Medical Team have my highest rating for their Knowledge, Compassion, Care and Listening Skills. I am not on the World Wide Web airing our dirty laundry. As you celebrate 4th of July, graduations and family weddings I am with all of you in Spirit. We have an Aunt with thyroid disease who someday might also have bc. This thread is very important for her future healthcare. Heads up guys-Heart Disease, Brain Anurisms and serious Family Medical History to us all. Herceptin future consequences still unknown. I have asked Denise at Julie's wedding to be my spokes person on my decision for NO BRAIN SURGERIES ORTREATMENTS UNDER ANY CIRCUMSTANCES-My Children ages 27,22 and 20 do not understand the serious of bc or what happened to Aunt Pat. We do. Let's all join in a Spiritual Circle of hands and pray for a Cure for Breast Cancer. OK James Gang-Take Care.
Love
Tami
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Old 07-03-2008, 02:49 PM   #11
tdonnelly
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How many of you know that our thyroid meds are not pure?
Since 1992 Synthyroid Class Action Lawsuit
I have been on numerous colored Meds-
The Drug Companies-bid-highest bid is colored pill sold on the Market at your local Pharmacy
Serious Illegal, Unethical, Life-Threatening, FDA/Government-Synthesizing our Meds for Private Experimentation SEE MY POST FOR RED PILL

My Oncologist ordered 99 Refills for me for Levothyroxine 175 mcg/purple pill so no more experiments, ER visits etc. for me.
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Old 07-03-2008, 02:57 PM   #12
tdonnelly
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Call my CVS Pharmacy for my address I would like my $50 check in the mail and then some. I am not going to go behind closed doors and discuss my Thyroid Disease/BC/Herceptin Nightmare to protect anyone's mistakes. God Say A Prayer for All...
Doctor's Remember Your Oath: First Do No Harm...
All of you know about what I am discussing here and yet you dont inform Patients...........

My Power of Attorney: I DO NOT WANT FUTURE TYROID SURGERIES OR UPTAKE SCANS-See 1999 (Red pill/Green pill) I almost died 1999 Christ Advocate/Oak Lawn - Why is that man still in the hospital-George Ryan/George Zeman/Southwest Trailor Park Lawsuit/Judge Riley (Cook County)
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Old 07-03-2008, 06:38 PM   #13
tdonnelly
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Hello Coworkers and Friends of the SunTimes/Chicago

George Ryan (?Indiana Prison?)

Tamara Donnelly-Open forum for IL APPEAL held at Worth, IL Family Dollar Store ??? 2001-2003

All who witnessed and were in attendance in my store while I was working -Public Leaders of Illinois what were you thinking

The Illegal Tar Roofing is a serious crime,numerous City Violations, deaths (2+ and counting) should have been front page News/Chicago. When I went to WalMart you thought we were finished. We have Just Begun to serve Justice.

I have Breast Cancer as a result just look at my face.
Have a Happy & Safe 4th of July...
Tamara
Midwest Publishing Co./Tinley Park, IL
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Old 07-03-2008, 09:14 PM   #14
tdonnelly
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Power of Attorney for HealthCare/CT-PA

Dear Sir,
Please note I want a DNR ORDER, no heart surgeries of any kind, no medical intervention of any kind.

I would like a full autopsy in the event of my demise.

See documentation that was mailed to your office for all other decisions and considerations. I look forward to seeing you soon
Tamara
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Old 07-04-2008, 09:28 AM   #15
Andrea Barnett Budin
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Exclamation Urgent Matter!!!!

Dear Tamara,

I am seriously concerned about your well-being.
Your situation is AN URGENT MATTER. This is what I believe you must do -- and you must do it right this minute! For yourself!

PLEASE MAKE A COPY OF ALL YOUR HER2 POSTS IN *CHECKING IN* AND FAX THEM TO YOUR ONCOLOGIST. SEND A COPY TO SEVERAL OF YOUR DOCTORS. Please do this right this now!

You are in need of medical help immediately. It is 4th of July weekend. Do not waste a single second in doing this. This is the best way to get your point across. You need help. You are in trouble.

Follow up, immediately again, with phone calls to alert these docs that they need to check their fax machines! Please do this, Tamara.

Are you alone? Do you live with anyone? Can you ask them to post here, commenting on your status? Please do this for yourself.

I am sending you love and prayers.

Andi

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'95 post-meno dx Invasive LOBULAR w/9cm tumor! YIKES + 2/21 nodes. Clear mammo 10 mnths earlier. Mastec/tram flap reconst/PORT/8 mnths chemo (4Adria/8CMF). Borderline ER/PR. Tamoxifen 2 yrs. Felt BLESSED. I could walk and talk, feed and bathe myself! I KNEW I would survive...

'98 -- multiple mets to liver. HER2+ 80%. ER/PR- Raging, highly aggressive tumors spreading fast. New PORT. 9 mnths Taxotere Fought fire w/fire! Pronounced in cautious remission 5/99. Taxotere weekly for 6 wks, 2 wks off -- for 9 mnths. TALK ABOUT GRUELING! (I believe they've altered that protocol since those days -- sure hope so!!)
+ good old Vit H wkly for 1st 3 yrs, then triple dosage ev 3 wks for 7 yrs more... The "easy" chemo, right?! Not a walk in the park, but not a freight train coming at 'ya either...

Added Herceptin Nov '98 (6 wks after FDA fast-tracked it for met bc). Stayed w/Vit H till July '08! Now I AM FREE! Humbly and eternally grateful for this life-saving drug! NED since '99 and planning on keeping it that way. To hell w/poor prognosis and nasty stats! STOPPED VIT H JULY '08...! REMAIN STABLE... Eternally grateful...Yes is a world & in this world of yes live (skillfully curled) all worlds ... (e e cummings) EVERY DAY I BEAT MY PREVIOUS RECORD FOR # OF CONSECUTIVE DAYS I'VE STAYED ALIVE. Smile KNOWING you too can be a miracle. Up to me and God now...

Last edited by Andrea Barnett Budin; 07-04-2008 at 09:31 AM.. Reason: butterfly again
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Old 07-04-2008, 03:24 PM   #16
tdonnelly
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Hi Andi & HER2+ Friends,

Happy 4th of July.
Thank you for your concern.
My docs & Power of Attorney for Healthcare all know my current status: I report here and they read at their office/home.
I am sleeping better with new med-Retinal ( 8 hrs/first night, 9 hrs/second night) I am not wozy when I awake at night to use the washroom. My docs have prescribed 8 Total to return to Normal Sleep Cycle.
I in the meantime am enjoying my 4 day weekend at home. Cleaning my house, running errands; my everyday stuff.
My family lives all over the United States so we keep in touch here and at Komen.
Yes I am an employee of Sun Times/Chgo @ Midwest Publishing out of Tinley Park: I have been working in the field for over 7+ years now. Hi Jim.
Going to enjoy the weekend with my out of town guests tommorrow; back to work on Monday.
I have many special friends, coworkers and family & neighbors that look over me-no I am not all alone.
For the month of July I am scheduled to meet with Rads Dr, Blood Test, Oncologist-follow up, Muga Scan-that's enough for me thanks.
You and I do not always agree and I know you have many more years experience with this crazy disease called breast cancer; but I assure I am doing the best that I can. Take Care
Tamara
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Old 07-04-2008, 04:02 PM   #17
tdonnelly
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Correction/New Med.

Resteril Manufactured by Mallinckrodt for Sleep

Take 1 at bedtime for 8 days. Completed 2 doses to date: Sleep 7 hrs on 7/2 and 9 hrs on on 7/3.

Thyroid meds as usual

Aleve for Headache: (1) on 7/3

No other meds.
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Old 07-05-2008, 10:54 AM   #18
tdonnelly
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7/5/08

Resteril 7.5 mg Night 3-good sleep 8+ hrs.
***Short-term use only-very addictive (I understand)
Will complete presp. of 8 capsules

No noticeable side effects: I get up once in middle of night/washroom not woozy; return to sleep. Wake up feeling OK, continuing daily routine as usual.

Walked 3 flights of stairs lastnight to rescue my Cat-Max: somewhat out of breathe, heart OK. No more concerns or problems with heart.

I dont drive so not a concern-throughout the day feel a tranquilizer effect-somewhat fatigued.

Thyrd as usual/no other meds required yesterday.

Hope All had a nice/safe holiday. See you when I can. Waiting for the Cheeseheads..........LOL
Love
Tami
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Old 07-06-2008, 05:49 AM   #19
Sheila
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Tamara
Where in Illinois do you live? We have get togethers about once a month in the Oakbrook area for the IL Her2 gals.
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is fighting some kind of battle."



Hugs & Blessings
Sheila
Diagnosed at age 49.99999 2/21/2002 via Mammography (Calcifications)
Core Biopsy 2/22/02
L. Mastectomy 2/25/2002
Stage 1, 0.7cm IDC, Node Neg from 19 nodes Her2+++ ER PR Neg
6/2003 Reconstruction W/ Tissue Expander, Silicone Implant
9/2003 Stage IV with Mets to Supraclavicular nodes
9/2003 Began Herceptin every 3 weeks
3/2006 Xeloda 2500mg/Herceptin for recurrence to neck nodes
3/2007 Added back the Xeloda with Herceptin for continued mets to nodes
5/2007 Taken Off Xeloda, no longer working
6/14/07 Taxol/Herceptin/Avastin
3/26 - 5/28/08 Taxol Holiday Whopeeeeeeeee
5/29 2008 Back on Taxol w Herceptin q 2 weeks
4/2009 Progression on Taxol & Paralyzed L Vocal Cord from Nodes Pressing on Nerve
5/2009 Begin Rx with Navelbine/Herceptin
11/09 Progression on Navelbine
Fought for and started Tykerb/Herceptin...nodes are melting!!!!!
2/2010 Back to Avastin/Herceptin
5/2010 Switched to Metronomic Chemo with Herceptin...Cytoxan and Methotrexate
Pericardial Window Surgery to Drain Pericardial Effusion
7/2010 Back to walking a mile a day...YEAH!!!!
9/2010 Nodes are back with a vengence in neck
Qualified for TDM-1 EAP
10/6/10 Begin my miracle drug, TDM-1
Mixed response, shrinking internal nodes, progression skin mets after 3 treatments
12/6/10 Started Halaven (Eribulen) /Herceptin excellent results in 2 treatments
2/2011 I CELEBRATE my 9 YEAR MARK!!!!!!!!!!!!!
7/5/11 begin Gemzar /Herceptin for node progression
2/8/2012 Gemzar stopped, Continue Herceptin
2/20/2012 Begin Tomo Radiation to Neck Nodes
2/21/2012 I CELEBRATE 10 YEARS
5/12/2012 BeganTaxotere/ Herceptin is my next miracle for new node progression
6/28/12 Stopped Taxotere due to pregression, Started Perjeta/Herceptin
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Old 07-06-2008, 08:47 AM   #20
Jackie07
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Hi Tammi,

You did sound like a sleep-deprived person. I am just so touched by our wonderful sisters who had tried to help you. But sounded like you are O.K. now.

Not trying to scare you. But here is my experience with my sleeping problems.

I always had nightmares and never slept well (unless I was just totally exhausted - probably why I liked to play basketball) At age 30, we finally found out that I had had a life-long brain tumor. When the problem was taken care of, my skin became smooth, my headaches were gone, my weight gradually improved...

I still have to read before I can fall asleep these days. But how nice it is to be able to sleep normally!

Hope you continue to improve in your sleeping condition. And thanks for sharing the details so honestly - that could help a lot of our members.
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