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Old 09-10-2007, 10:07 PM   #1
Joanne S
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Question Am I Obsessed?

It has been a year since I was diagnosed with BC. Not one single day has gone by where I haven't thought about cancer, talked about cancer, read about cancer and/or researched the net about cancer. I have had a positive attitude all along this journey, but I have been depressed for the past 4-5 weeks. Having a gall bladder attack and surgery a few weeks ago didn't help. My persistent chest and armpit pain, fatigue, and fevers remind me of my BC every day. For the past two months, most evenings I get a tickle deep in my throat and cough, the more I cough, it seems the more I need to cough more. The split second I wake up, my pectoralis muscles are so tight making my chest so painful I can't move. Somedays the pain is so bad I have to yell for my husband to help me out of bed or off the couch. I spend most of my days and nights sleeping, watching TV, reading, and on the laptop. I have been a couch potato for a year now and only go out for doctor visits, treatments and testing. I really don't have any desire or energy to do anything or go anywhere. It's been a few weeks since I found this site, but I am driven to check it out every day. I think I'm obsessed with my diagnosis. Am I obsessed? Or what???
__________________
Aug06...Dx Age 50, IDC Left Breast, 6+/16 lymph nodes, Stg 3, ER+/PR+/HER2+
Sep06-Jan07...Mediport. Chemo: AC x 4, T x 4
Dec06-Nov07...Herceptin
Feb12,2007...Surg MRM Left & SM Right, reconstruct w/expanders
Mar07-Jun07...Saline Exp
Jun07...Start Tamoxifen
Jun07-Aug07...Rad x 25
Jun07-Oct07...Persistent fevers-unknown origin
Jun07-Nov07...PT for Severe PMPS & Capsular Contracture
Nov07...Surg Capsulectomy, Gel Implants, PMPS pain gone instantly.
Feb08...NED 1st CANCERVERSARY!!!!!
Feb08...2 months post surgery Caps Cont again :(
Mar08...Stop Tamoxifen. Start Arimidex.
Apr08...Sudden high fever, Hosp ICU 10 days, staph infect, emerg surg, implants removed. Outpt IVantibiotics Daily x 6 weeks
Feb11...NED 5th CANCERVERSARY!!!!!
Feb12...NED 6th CANCERVERSARY!!!!!
Aug12...Spotting. Surg=D&C
Sep12...STAGE IV = RARE BC METS TO UTERUS ILC ER+/PR+/HER2-Negative) (Different BC than originally diagnosed = IDC ER+/PR+/HER2+).
Sep12...Stop Arimidex. Start Afinitor & Aromasin.
Jan13...MRI = no progression no reduction
Apr13...Progression. Stop Afinitor & Aromasin.
Apr13...Start Chemo: Taxol & Carboplatin.
Nov13...Scans & Pelvic 95+% Reduction. Nueropathy>Stop chemo start Fareston.
Jan14...PET scan = no progression stable.
May14...Pelvic > Bleeding & cramps. TMs up.
May14...PET scan = uterine progression :(
May14...Stop Fareston. Start Chemo: Xeloda.



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Old 09-11-2007, 02:19 AM   #2
madubois63
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Your not obsessed, but I do think your depressed and angry. I don't know if your taking any anti-hormonal medication (Tamoxifen, Femora...); but after fighting for my life and beating the bc, I found myself crying and desperately wanting to kill myself. I told my oncologist, and he put me on zoloft. It takes a little while to kick in, but I remember the exact moment of clarity. It was like a pop in my head, and I realized "wow, I'm me again."

It is good to keep updated and informed about your passed diagnosis, but it is also time to let go of the anger. Are you taking pain medication or trying to be a hero? Your complaints are real and should not ignored. I didn't want to take anything, but that is why these medications were made...you won't become addicted. You have a valid reason to take these medications. If your doctor doesn't agree, get another doctor. YOU hired him/her and YOU are the boss!

Call CancerCare or the American Cancer Society. You need to get in to a support group. For some, this board is enough, but you need to get up and out. I made the most amazing friends through a local support group. we started with bagels after the meeting, then progressed to walking around the mall. Now, we find free seminars, art sessions and exercise programs for cancer patients. Everyday you will heal and think less and less about cancer. You posted a plea for help, so it makes me think you are ready to move on. I do think that everyone gets a little obsessed with the boards when finding them. The information, support and realization that your not alone is amazing and refreshing. You can be yourself here and not worry about scaring anyone with your deepest feelings. we understand and we are here any time of the day (you also don't have to get out of your pj's).

Please read some of the "joy" thread. These are women that have been through everything you have too...and they are living! Get inspired and live the life you have always wanted to...even if it is just one change at a time. You deserve it!!!
__________________
Maryann
Stage IV Inflammatory BC 1/00
Mod Rad Mastectomy 24nod/5+
Adriomycin Cytoxin Taxol
Tamoxifen 4 1/2 yrs
Radiation - 32 x
Metastatic BC lung/liver 10/04
thorocentesis 2x - pleurodesis
Herceptin Taxatiere Carbo
Femera/Lupron
BC NED 4/05
chemo induced Acute Myeloid Leukemia 5/06
Induction/consolidation chemo
bone marrow transplant - 11/3/06
Severe Host vs Graft Disease of liver
BC mets to lung 11/07
Fasoladex Herceptin Zometa Xeloda
GVHD/Iron overload to liver
Avascular Necrosis/morphine pump 10/10
metastatic brain tumor
steriotactic radiosurgery
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Old 09-11-2007, 02:58 AM   #3
KellyA
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Dear Joanne

I can identify very much with what you are saying. I KNOW I was (am sometimes still) "obsessed"- not by choice- it just seemed that even when I was trying to get away from it all, the smallest thing would remind me and bring it back. I researched for hours every day hoping to find out some shread of info that I could use to aid me in my fight. This went on for about a year or a little more. My day consisted of doctors appts., reasearching on the computer, venting and crying with those around me, and sitting- spending way to much time thinking about all of the awful things that could happen..... And yes, this was on Lexapro (hate to see me without it!).

Then one day I just got tired. Tired and bored. I don't think there is much else I could know that would help me now, frankly I am SICK, SICK, SICK, of breast cancer (as I am sure that everyone else around me is!!!!). I recently took a full time job (was a part-time worker and stay at home mom) and just the fact that I am busy and don't have time to think has helped enormously. I also walk every day that I can and feel so much better when I do. I only "peek" in here (no other sites or research) for a minute or so daily to check in and see how everyone is. Once a day, and then I don't get on the computer again. A tiny thing that I think has helped alot is that I started this thing where I pick a day (try to do it on a day without any doctor appts :-) ) and I make up my mind that no matter what the discussion leads to, I will not say the word cancer, speak of any of my related experiences, or talk about how crappy I feel. This can be very hard because I still hurt quite a bit sometimes, and I feel like everything somehow brings up the topic. But day by day the subject comes up less and you start replacing the cancer experiences with new evryday ones that don't relate.

I think it will get even better with time, and although I will never be "safe" from dealing with a reoccurence, I do think that a little time with it behind me will help enormously. You have to remember that what you have been through is HUGE. And it wasn't a one day horrible life experience. It took over your life for a year with treatments, tests, surgeries- very traumatic. Horrifying experience, but one that TONS of blessings came out of, at least for me. I just need to work on extracting those blessings and pitching the rest. :-)

Love, Kelly
__________________
dx'd 05/06, 37 years old
er/pr-, Her2+, grade 3
double mastectomy, immediate reconstruction- implants
Stage 2b, 2 tumors- 2.2 cm and 0.6 cm, 3/5 + nodes
all scans clear
genetic testing- negative
06/06 began dd A/C x 4, 12 weekly Taxols w/ Herceptin
30 rads
Herceptin weekly x 1 year
Herceptin completed 08/07
Port removed 12/26/07 MERRY CHRISTMAS!!!!!!
05/17/08 Two year anniversary NED

"We gain strength, courage, and confidence by each experience in which we really stop to look fear in the face... you must do the thing that you think you cannot do."

-Eleanor Roosevelt

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Old 09-11-2007, 04:04 AM   #4
dhealey
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I think everyone on this board at one time or another was feeling the same as you. What helped me the most was continuing to work during treatment. No I am not super woman, it just helped me to not focus on the cancer. I still get freaked out about recurrence, but I try to set this aside and let the good lord worry about it. I started to feel depressed about 3 months ago, instead of going on a nerve pill (nothing wrong with that though) I decided to participate in the Avon Walk for the Cure in October, in Charlotte, NC. I started focusing on training and making my self healthy again. The walk is 26 miles one day and 13 the next. My daughters have helped me raise over $6000 and I can now walk over 20 miles on my long walk days. Yes I still have the aches and pains yes I am still getting herceptin treatments, but I am also doing something to help others like us and this makes me feel much better. I also decided it was time to buy my self something really nice for all the months of "Hell" this disease causes you to go through. I haven't had a car in the past year, was putting it off because I didn't think I would still be here. I decided last week and took the plunge and bought a car with a 6 year pay plan. Now I have to survive to pay for it. I just decided to start moving forward with my life. You too, will in time move on. Best of luck
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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 09-11-2007, 07:45 AM   #5
Jean
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Welcome to our Family....

Dear Joanne,
I am sorry that you have been dx. with bc. But you have found this wonderful family of woman. You have been through major surgery,
of course you body will take time to heal and recover. The cough you
mention is most likely from the herceptin. I had the cough also, it does
go away. Allow yourself time to heal. It is important to have some
exercise - maybe you could begin with small walks and then add five min. to the walks to build up.
Also joining a local YMCA or gym is a good beginning..it not only serves to get you going, but also
you will get out of the house and back into the world. Right now your home all day by yourself.
Hopeful just posted a great article on a study done regarding recurrance and depression. Take a peek at it.

I don't think your obessed, it is normal to search for information, maybe once you read the information it is
frightening you, and fear will depress you.

Joanne, realize that you are a survivor, you may not feel like one,
but you are. You have found us here at Her2, where you can discuss
just about anything you wish. Everyone is special here and different,
that is what makes this group so wonderful.

Most important, remember that you are "Not Alone!"

Kind Regards,
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 09-11-2007, 08:10 AM   #6
Jean
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Joanne,
Just re-read your signature....you are fresh out of radiation....8/07...
that would explain the fatigue....give yourself time to rebound.
The radiation takes a lot of your energy. Rest when your body feels
tired..once again, you do need to get some small amount of exercise.
It will help to rebuild your strength.

Best of luck.....
Hugs,
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 09-11-2007, 08:25 AM   #7
Sandy in Silicon Valley
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sometimes obsession is normal...

Hi, Joanne -

I've been reading the replies to your post with interest. It's difficult to remember back that far, for me (1992 - primary, mastectomy, CAF, Tamoxifen).

But everything you're going through is within the range of what people experience when they get dreaded bad news, and/or go through a physically/emotionally traumatic experience.

I disagree with the member who wrote that you are "stuck" in anger. Anger is a normal part of the grieving process, and I think it's important to allow yourself time to heal both physically and emotionally. As another member wrote - you just completed radiation tx a little over a month ago. That's very hard on some patients' bodies.

If you are really fed up with feeling like you do, it may be the right time to start taking some action. There are therapists - both physical and psychological - who can work with you to find solutions to your pain, lack of mobility, and the emotional slump you've described. I saw a psychologist for 4 years after my initial diagnosis, and again more than 10 years later, when I was struggling about my bcmets diagnosis. There are medications that can help take the edge off your black mood, without making you feel numb or unreal. There's physical therapy and exercises you can do to try to gradually recover from your surgery. There are pain meds to manage your pains.

It is not necessary to forget you've had breast cancer, in order to live with a decent QOL. If your obsession leads you to actively seek solutions, it can even be a good thing. If it's overwhelming and paralyzing, you might want to find someone who can help you out of the paralysis, and into regaining some sense of control and recovery.

(((hugs))) and wishes for your successful recuperation,

Sandy in Silicon Valley
__________________
1992 - age 44/ ER-/PR+ Stage II dx - mastectomy, CAF x 6 cycles; Tamoxifen
1997 - BRCA1 mutation dx'd
1998 - ovaries removed
1999 - off Tamoxifen, on Arimidex
2003 - dx'd Stage IV - lymph nodes & lungs. ER-/PR-/HER2neu+++.
Tx: Herceptin & Taxotere (6 cycles).
2005 - 2.9cm x 3.6cm brain tumor. Craniotomy, CyberKnife. 9 mo. staph aureus infection at incision site - 2nd craniotomy. Two small brain mets CyberKnife'd.
2006 - revisit Xeloda - dosage lowered to 2500mg/day, 5 cycles.
2007 - "spot" dx'd on qtrly brain MRI - same location as CyberKnife 7/05. > by 2-4mm per quarter - - radiation injury or re-growing cancer? Tykerb added to Herceptin - July, still "watching & waiting". Otherwise, fully functional...


"The majority of people are not only afraid of holding a wrong opinion, they are afraid of holding an opinion alone." Kierkegaard
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Old 09-11-2007, 09:23 AM   #8
RhondaH
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Smile Joanne...

No, you are not. I TOO thought I was and it wasn't until recently (over 2 years since dx) that I found that I am not thinking about it as much. You TOO will get past it and not think about it as much, but it will take time. I know that probably your family and friends don't understand it (mine haven't), but then I tell them that they have not been where I am AND everyone deals with it differently, I have a friend at the cancer center who has been stage 4 for 6 years and she has NO obsession w/ cancer...just goes in weekly for Herceptin. Curious, where in Michigan are you located? I'm in Grand Rapids.

Rhonda
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Rhonda

Dx 2/1/05, Stage 1, 0 nodes, Grade 3, ER/PR-, HER2+ (3.16 Fish)
2/7/05, Partial Mastectomy
5/18/05 Finished 6 rounds of dose dense TEC (Taxotere, Epirubicin and Cytoxan)
8/1/05 Finished 33 rads
8/18/05 Started Herceptin, every 3 weeks for a year (last one 8/10/06)

2/1/13...8 year Cancerversary and I am "perfect" (at least where cancer is concerned;)


" And in the end, it's not the years in your life that count. It's the life in your years."- Abraham Lincoln
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Old 09-11-2007, 10:38 AM   #9
Brenda_D
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I understand. It's been almost a year since I found my lump and started this strange journey. I didn't have a mastectomy. I had a lumpectomy.
I also have chest pain, breast pain, aches and pain in other areas (back, hip joints, thigh bones). I am also suffering from fatigue. I was better for awhile after I finished rads, but the fatigue seemed to have worsened in the last month and a half.
I'm on Prozac, gabapentin, Ativan, and Vicoden. They help me sleep, and get through the day. I don't obsess too much about my dx, even though it's not great. I can't let BC take the rest of my life away from me.
But, I do check a few BC sites on a daily basis. I don't always post, but I do browse the posts.
There have been a few times when I had to get totally away from all things BC, to remind myself not to let BC overtake my life.
The meds have helped me to adjust to living with BC and not obsess so much about dying from it.
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12/12/06- IDC Stage III, 4x A/C, 35 rads, Herceptin 1 year
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Old 09-11-2007, 11:09 AM   #10
DonnaD
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Hi Joanne,
I just wanted to say Hi and welcome. This is a wonderful site and you now have many "sisters". You are not obessed. We have all felt exactly how you are feeling. My worst time came when chemo and radiation were over when I wasn't actively fighting this beast. I am so grateful for Herceptin and the fight goes on! I too have aches and pains and I worry it is a sign of a reoccurance. When those times come I must remind myself to get on with life and concentrate on the many blessings in my world.

Some hints that have helped me. Exercise helps me feel better, and it does not have to be a huge chunk of time each day. The hospital you are getting treatment from probably has services available for you to talk with someone. I actually found a sister from this site with the same diagnose and she walked me through chemo. I will always be grateful to SherryS and how she came into my life just when I needed her. If you feel drawn to someone and need help send them a private message.

I love this site and all the gals here, but like Kelly I can't be here all the time. Especailly at night before I go to bed. I get so concerned about everyone I can't sleep. Remember there are many that have been to this site are NED and are on with their lives. We often don't hear the good reports which we so desperately need.

It will get better. I hope I have one day where I don't think of cancer once, but so far that has not happened. But I look back on the last year and I know I have grown and feel much better about this journey. You will also.

Good luck sister and I will say a special prayer for you.
Donna
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Donna
Crystal Lake, IL
Diagnosed 8/4/06 at age 54
Lumpectomy 8/30/06
Stage llA, grade 3, ER/PR-, Her2++
1.7 cm tumor, 1+ lymph node out of 9
Completed 4 A/C, & 4 Taxol with Herceptin
36 rads completed 5/16/07
Mammograms, 7/07 clear
fractured ribs in radiated area 10/07
Finished Herceptin 12/27/07
Mammogram,CT,tumor markers 1/08 - small lung nodules in radiated area, repeated tests 3/08 stable
Mammogram,CT ,tumor markers 6/08 stable
NED 2 years!!
3 years !!!
4years!!!!
4 years, 10 months and 8 day NED, calling it 5 years!!!
Official 5 years 8/30/2011
8/31/ 2012 - 6 years!!!!!!
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Old 09-11-2007, 12:25 PM   #11
PinkGirl
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Smile no

No you are not obsessed. You have received some very good advice here. I will add that we have to be somewhat "obsessed" for our own good. We have to keep ourselves informed.

Your rads just finished last month so you shouldn't be too hard on yourself for feeling tired. Just start to take "baby steps" to get yourself out of the house and your energy will gradually increase. I'm still tired 2 years out, so I make the most of my "good" days and don't beat myself up when I get tired. Good luck.
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PinkGirl

Dx Aug/05 at age 51
2cm. Stage 2A, Grade 3
ER+/PR-
Her2 +++

Sept 7/05 Mastectomy
4 FAC, 4 Taxol, no radiation
1 year of Herceptin
Tamoxifen for approx. 4 months,
Arimidex for 5 years
Prophylactic mastectomy June 22/09



" I yam what I yam." - Popeye

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Old 09-11-2007, 12:32 PM   #12
StephN
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Question Complicated by menopause??

Hi dear sister in the fight -
And I don't just mean the fight against our cancer, but in all else that goes with that diagnosis, such as the subject of your post. People who have never been diagnosed with a life threatening disease do not know that there is also so much else to deal with.

I was also diagnosed at age 50 and am now 58, having been a stage IV fighter since Jan. of 2002. What I am thinking is that you may be in the throes of menopause and these symptoms are so much like the aftermath of BC treatments that you may be getting a double whammy. Depression, fatigue and listlessness are also signs of hormone decrease. You do not mention such things as hot flashes, night sweats, sleeplessness, etc, but they may not be necessary to menopause as you experience it. (I did not have those problems, but do have fatigue.)

Perhaps you should check with the doctor you feel is most qualified to delve into this question of hormone deficiency and what to do about it. From experience I know there is only just so far that WANTING to do things goes toward actually doing them.

The promise I made to myself years back in this fight was to pick one thing (at least) to accomplish each and every day. After a year of treatments a lot piles up that needs dealing with. This problem in itself can be depressing, and making any kind of headway in that department can also be uplifting.

You have many sage words of advice here and I hope I added something else that may help you.
__________________
"When I hear music, I fear no danger. I am invulnerable. I see no foe. I am related to the earliest times, and to the latest." H.D. Thoreau
Live in the moment.

MY STORY SO FAR ~~~~
Found suspicious lump 9/2000
Lumpectomy, then node dissection and port placement
Stage IIB, 8 pos nodes of 18, Grade 3, ER & PR -
Adriamycin 12 weekly, taxotere 4 rounds
36 rads - very little burning
3 mos after rads liver full of tumors, Stage IV Jan 2002, one spot on sternum
Weekly Taxol, Navelbine, Herceptin for 27 rounds to NED!
2003 & 2004 no active disease - 3 weekly Herceptin + Zometa
Jan 2005 two mets to brain - Gamma Knife on Jan 18
All clear until treated cerebellum spot showing activity on Jan 2006 brain MRI & brain PET
Brain surgery on Feb 9, 2006 - no cancer, 100% radiation necrosis - tumor was still dying
Continue as NED while on Herceptin & quarterly Zometa
Fall-2006 - off Zometa - watching one small brain spot (scar?)
2007 - spot/scar in brain stable - finished anticoagulation therapy for clot along my port-a-catheter - 3 angioplasties to unblock vena cava
2008 - Brain and body still NED! Port removed and scans in Dec.
Dec 2008 - stop Herceptin - Vaccine Trial at U of W begun in Oct. of 2011
STILL NED everywhere in Feb 2014 - on wing & prayer
7/14 - Started twice yearly Zometa for my bones
Jan. 2015 checkup still shows NED
2015 Neuropathy in feet - otherwise all OK - still NED.
Same news for 2016 and all of 2017.
Nov of 2017 - had small skin cancer removed from my face. Will have Zometa end of Jan. 2018.
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Old 09-12-2007, 12:29 AM   #13
Joanne S
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My biggest thanks to all of you for your support, honesty and genuine kindness. I am very touched by all your comments.

I am on Zoloft (been on it for 13 years) and my doctor increased my dosage last week. I lost my terminally ill daughter in 1989 and I was never the same since. I didn't want any depressions medication because I thought I was entitled to feel devasted and depressed. It took me 5 years to finally give in and start Zoloft in 1994.

My mother died of breast cancer met to bones in Sept 5, 1996---11 years ago. She had back pain for over 2 years, 1992-1994, lots of doctor visits, ER visits, inpatient stays, tests etc, but was never diagnosed until a very young resident in the ER looked at her back x-ray and pulled me aside and told me she has cancer tumors everywhere and she was terminal. That was in 1994. The doctor said she had less than 6 months. She fought it tooth and nail with her fighting negative attitude. She did not want to die and it was very obvious; however, she never uttered the word cancer (it was taboo). She refused Chemo and Radiation (torture). She survived 2 years on Tamoxifen and Morphine alone. She believed eating 4 times a day was fighting her ... We never talked to an oncologist, and at the time, I did not know enough to ask why kind of breast ... or any questions ---I was in shock. I had no clue and she didn't want to know anything so unfortunately I never asked.
.
So you see I have been on this road before. It took a long time for me, but I improved gradually and greatly over time. I learned understanding, compassion, what was truly important in life, and what had value in life.

Recommended by my oncologist, I went to see a physiatrist today, he specializes in breast cancer pain and lymphedema. I was delighted to find hope in treating my severe post-mastectomy pain. Amazing--he evaluates and treats over 1,200 patients a year. And he told me to stay off the internet as there is a tremendous amount of information that is not validated or confirmed or misleadling. He prescribed Lidoderm patch and Neurotin. He showed me what exercises to do and which to stop doing (the ones my previous PT advised me to do). To my surprise, during my examination he found a pinched nerve in the area, and he also found a specific area of arm weakness--- I never realized I had either. He also validated that those problems along with breast nerve and muscle pains were compounding the condition. He is sending me for PT with a therapist that specializes in breast shoulder and arm pain only. He has a wonderful bedside manor and sense of humor along with tremendous experience and expertise in this area. I left his office feeling uplifted and hopeful and was positively effected with his understanding of my condition.

I am taking in all the advice, suggestions and examples of experiences, not just from this doctor, but from all of you---my cancer sisters. Your supportive responses, understanding and advice along with sharing your personal experiences has deeply touched me! You all truly understand.

Thank you---all of you---Thank you! Hugs XXXXXXXXXXXXXX
And Well Wishes to all of you! You have pointed me in the right direction on the road for improvement.

PS ( I really enjoyed all the chinese hamster comments on my other post. Humor is great medicine! If you haven't seen it, be sure to check it out.
Herceptin---did you know
link: http://her2support.org/vbulletin/sho...33015#poststop )
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Aug06...Dx Age 50, IDC Left Breast, 6+/16 lymph nodes, Stg 3, ER+/PR+/HER2+
Sep06-Jan07...Mediport. Chemo: AC x 4, T x 4
Dec06-Nov07...Herceptin
Feb12,2007...Surg MRM Left & SM Right, reconstruct w/expanders
Mar07-Jun07...Saline Exp
Jun07...Start Tamoxifen
Jun07-Aug07...Rad x 25
Jun07-Oct07...Persistent fevers-unknown origin
Jun07-Nov07...PT for Severe PMPS & Capsular Contracture
Nov07...Surg Capsulectomy, Gel Implants, PMPS pain gone instantly.
Feb08...NED 1st CANCERVERSARY!!!!!
Feb08...2 months post surgery Caps Cont again :(
Mar08...Stop Tamoxifen. Start Arimidex.
Apr08...Sudden high fever, Hosp ICU 10 days, staph infect, emerg surg, implants removed. Outpt IVantibiotics Daily x 6 weeks
Feb11...NED 5th CANCERVERSARY!!!!!
Feb12...NED 6th CANCERVERSARY!!!!!
Aug12...Spotting. Surg=D&C
Sep12...STAGE IV = RARE BC METS TO UTERUS ILC ER+/PR+/HER2-Negative) (Different BC than originally diagnosed = IDC ER+/PR+/HER2+).
Sep12...Stop Arimidex. Start Afinitor & Aromasin.
Jan13...MRI = no progression no reduction
Apr13...Progression. Stop Afinitor & Aromasin.
Apr13...Start Chemo: Taxol & Carboplatin.
Nov13...Scans & Pelvic 95+% Reduction. Nueropathy>Stop chemo start Fareston.
Jan14...PET scan = no progression stable.
May14...Pelvic > Bleeding & cramps. TMs up.
May14...PET scan = uterine progression :(
May14...Stop Fareston. Start Chemo: Xeloda.



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Old 09-12-2007, 03:50 AM   #14
Kimberly Lewis
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Location: Hilton Head Island, SC
Posts: 279
Smile wow

What a turn around! I was going to respond earlier as I saw some of myself in you but everyone else did such a good job! I am sooooo happy you got such good care and had such positive results. So much of what we experience could be alleviated by better medicine. Its out there we just seem to be overlooked or they are over worked or....
You really deserve it after the incredible losses you experienced. Keep us posted and maybe some of us will demand better treatment like yours! Thanks so much for sharing.
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Kim

Diagnosed 7/05
Stage 3a er+(45%) pr+(68%) Her2+ (40%)
3.8 cm + .8cm multi focal - pleomorphic lobular tumors
high grade DCIS
7/20 nodes

BRCA 2
positive as of 5/07
surgeries: double mastectomy, hysterectomy (LAVH)
A/C,Herceptin for 1 year completed 11/06
femara


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Old 09-12-2007, 07:45 PM   #15
Barbara2
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Location: South Dakota.
Posts: 621
fever

My first port caused me to have a mild ongoing temp until it was finally time to remove it. It apparently was infected enough to give me a fever. When we took it out, the fever did go away.

I had fatigue for quite a while (about a year and a half) after finishing treatments. I believe some of the fatigue was from a couple of the meds I was taking: Celebrex, 400 mg daily, for about 14 months. I immediately felt better when stopping the Celebrex.

I also became addicted to the Ativan, which I took nightly for about a year and a half. I loved the relaxed feeling and also slept really well. But when it started becoming an addiction, it, too, was making me feel lousy. After getting "unhooked" I felt much better.

Your body has been through a lot. Give yourself time, a lot of time, to heal. Daily reading of short, positive affirmations, have also been a blessing. It brings me peace.
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Blessings and Peace,
Barbara

DX Oct 02 @ age 52 Stage 2B Grade 3 Mastectomy
"at least" 4.5 cm IDC 1+node ER+61% /PR-
Assiciated Intraductual component with Comedo Necrosis
Her2+ FISH8.6 IHC 2+
5 1/2 CEF Arimidex
Celebrex 400mg daily for 13 months
Prophylactic mastectomy
Estradiol #: 13
PTEN positive, "late" Herceptin (26 months after chemo)
Oct 05: Actonel for osteopenia from Arimidex.
May 08: Replaced Actonel with Zometa . Taking every 6
months.

Accepting the gift of life, I give thanks for it and live it in fullness.
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Old 09-12-2007, 09:26 PM   #16
Bev
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Join Date: Dec 2005
Location: Alexandria, VA
Posts: 1,055
Sounds like you're going down a good path. Hope they can help with pain.

I am for one, obsessed. If we aren't, who will be? Doing Zoloft with Ativan for special occasions. I took the whole DX rather intensely. Stage 2B.

Thanks for giving us info. It does get better very slowly. 2 years out. BB
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Old 09-13-2007, 06:40 AM   #17
PinkGirl
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Posts: 2,193
Smile good for you !!!

Hi Joanne
I read your yesterday's post and I am so happy for you -- you sound so much better. I am glad you found some help with all your aches and pains. I know what it feels like to walk out of a doctor's appointment feeling like a weight has been lifted. You just needed some help, and there's nothing wrong with that. Hope you get good results with the new PT. I had lots of arm and shoulder pain and have mild lymphodema -- physio really helped me a lot. Have you tried sleeping with a little tiny pillow under you arm ? It helped me a lot. Also............thanks for starting that "hamster thread". As you've probably noticed, I am having a blast with it !!! You gotta laugh !!!
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PinkGirl

Dx Aug/05 at age 51
2cm. Stage 2A, Grade 3
ER+/PR-
Her2 +++

Sept 7/05 Mastectomy
4 FAC, 4 Taxol, no radiation
1 year of Herceptin
Tamoxifen for approx. 4 months,
Arimidex for 5 years
Prophylactic mastectomy June 22/09



" I yam what I yam." - Popeye

My Photo Album
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Old 09-15-2007, 06:18 PM   #18
Patb
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Location: Louisville KY Naples FL
Posts: 665
Images: 2
Hi all
With all the drugs we have to take, fatigue becomes a big problem.
Just with herceptin alone my blood pressure went up, blood pressure
meds were given, my cholestrol went up, cholestrol meds were given, plus
arimidex for estrogen positive bc and on and on. I have to get up early
just to take all the pills. The one thing that always helps is humor and I
love the hampster story. Best of luck to all and we have to just keep on
going.
patb
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patb

Diagnosed June, 06, Stage I, Grade3, ER+PR- Her2positive, No Nodes. A/C X 4. Radiation 33 with boost, Herceptin every two weeks until Nov.
07, Arimedex for 5 years. Mugas and Echo and chest xRay. Bone scan of whole Body, and Back of Brain and spine MRI.
CT scan of Lungs every six months
due to two small places. December
2009, bone scan due to bone pain.
Follow up test in 2010.
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Old 09-16-2007, 11:59 AM   #19
Joanne S
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Join Date: Aug 2007
Location: Detroit Metropolitan Area, Michigan
Posts: 592
Oooh o the Pain----help!
Hi all, I have not had any relief from the Lido pain patch nor the Neurotin. I have continued on my Motrin otherwise I would not be able to endure. I have been doing the breast messages and stretches as my new doctor advised last week. Unfortunately, my breast pain and muscle tightness/hardness has actually increased and seems my implant (tissue expander and/or capsular contracture) has invaded or moved further into my armpit. In addition, my range of motion in my arm has decreased. And if that tissue expander expands any further up my chest, it'll be on my shoulder. I am uncorfortable all of the time, and the pain now wakes me from sleep. Unfortunately, I have not been able to start physical therapy but I'm on the top of their list for the first opening---most likely within 2 weeks. I've had my tissue expanders in since February and I know that radiations have impacted everything in that area. Anyone ever experience anything similar? Any suggestions for pain for Fake boobs of steel---Many thanks to my BC Sisters for your support. XXXXX
__________________
Aug06...Dx Age 50, IDC Left Breast, 6+/16 lymph nodes, Stg 3, ER+/PR+/HER2+
Sep06-Jan07...Mediport. Chemo: AC x 4, T x 4
Dec06-Nov07...Herceptin
Feb12,2007...Surg MRM Left & SM Right, reconstruct w/expanders
Mar07-Jun07...Saline Exp
Jun07...Start Tamoxifen
Jun07-Aug07...Rad x 25
Jun07-Oct07...Persistent fevers-unknown origin
Jun07-Nov07...PT for Severe PMPS & Capsular Contracture
Nov07...Surg Capsulectomy, Gel Implants, PMPS pain gone instantly.
Feb08...NED 1st CANCERVERSARY!!!!!
Feb08...2 months post surgery Caps Cont again :(
Mar08...Stop Tamoxifen. Start Arimidex.
Apr08...Sudden high fever, Hosp ICU 10 days, staph infect, emerg surg, implants removed. Outpt IVantibiotics Daily x 6 weeks
Feb11...NED 5th CANCERVERSARY!!!!!
Feb12...NED 6th CANCERVERSARY!!!!!
Aug12...Spotting. Surg=D&C
Sep12...STAGE IV = RARE BC METS TO UTERUS ILC ER+/PR+/HER2-Negative) (Different BC than originally diagnosed = IDC ER+/PR+/HER2+).
Sep12...Stop Arimidex. Start Afinitor & Aromasin.
Jan13...MRI = no progression no reduction
Apr13...Progression. Stop Afinitor & Aromasin.
Apr13...Start Chemo: Taxol & Carboplatin.
Nov13...Scans & Pelvic 95+% Reduction. Nueropathy>Stop chemo start Fareston.
Jan14...PET scan = no progression stable.
May14...Pelvic > Bleeding & cramps. TMs up.
May14...PET scan = uterine progression :(
May14...Stop Fareston. Start Chemo: Xeloda.



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