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09-04-2007, 08:37 AM
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#1
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Senior Member
Join Date: Jan 2007
Posts: 144
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Stopping Herceptin before 1 year
I have been having so much joint, foot pain that I am seriously considering stopping Herceptin before the full year. I have searched the internet for any info. regarding less than the 52 week treatment and have found the New Zealand info. and the Finland info. Cost is not the issue for me, as my insurance has been great. My problem is the joint pain. It is in my toes, the bottom of my feet, my Achilles tendoin, my elbows, shoulders, fingers, you name it, it has intense pain. It has gotten worse as time has gone on.
I have the Herceptin mixed with sterile water for my treatmens, take all the vitamins along with Mega EFA Omega-3 EPA & DHA supplements, walk at least 1 1/2 mile each day, eat really well (I always have). I thought Celebrex would help, but then I just got to the point that I could no longer go up and down my stairs or up out of a chair. I am now taking Darvocet to get through my day.
I have 6 more treatments scheduled before my year is up. I just don't know if I can do this.
Any advice or info regarding shorter duration of treatment or how to lessen the pain, would be greatly appreciated.
Emelie
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09-04-2007, 08:59 AM
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#2
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Senior Member
Join Date: Jul 2007
Location: Canada
Posts: 2,193
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Pain
Hi Emelie
I finished a year of Herceptin in January of this year. The way you describe your pain is exactly what I am experiencing, only it is supposed to be from the Arimidex I am taking. Are you taking Tamoxafin or any of the A.I.'s? I took notice when you mentioned your Achilles tendon. I am going to get new orthotics for my shoes because my family doc. thinks my Achilles tendon is so tight it is going to tear. My feet, ankles, knees, hips,
fingers and wrists all hurt (alot). I have a lot of pain when I go up and down stairs, and when I get up after sitting of lying down. I don't have any advice regarding the pain - I only take glucosamine and I don't know if it is helping. I do know that the more I move, the better I am.
Good luck.
__________________
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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09-04-2007, 09:01 AM
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#3
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Senior Member
Join Date: Apr 2006
Location: Wilmington, Del.
Posts: 1,126
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I am sorry that your pain is making it hard for you to walk. I had to stop Herceptin at 9 month because my muga dropped 16 points. The oncologists think about risk -- I was stage 1 with a tiny tumor and I guess he was more concerned about risk to my heart than with my finishing one year. How big was your tumor; did you have positive nodes? I believe there are European studies going that are trying to prove that 6 months is as effective as 9 months, but the results won't be in for a few years. I feel reasonably confident that I got enough Herceptin treatment. You have to feel that way too if you stop.
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MJO
IDC, Stage I, Grade 2
Oncotype DX Score 32
Her2++ E+P+, Node Neg.
Lumpectomy 11/04/05 Clear Margins
3 Dose dense AC (Couldn't tolerate 4)
4 Dose dense Taxol & Herc. (Tolerated well)
36 weeks Herceptin (Could not complete one year due to decrease in MUGA score)
2 years of Arimidex, then three years of Femara
Finished Femara May 2011
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09-04-2007, 09:03 AM
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#4
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Senior Member
Join Date: Apr 2006
Location: Wilmington, Del.
Posts: 1,126
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Sorry - I meant there are European studies going on that are trying to prove 6 months of Herceptin is as effective as 12 months, but no results yet.
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MJO
IDC, Stage I, Grade 2
Oncotype DX Score 32
Her2++ E+P+, Node Neg.
Lumpectomy 11/04/05 Clear Margins
3 Dose dense AC (Couldn't tolerate 4)
4 Dose dense Taxol & Herc. (Tolerated well)
36 weeks Herceptin (Could not complete one year due to decrease in MUGA score)
2 years of Arimidex, then three years of Femara
Finished Femara May 2011
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09-04-2007, 08:42 PM
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#5
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Senior Member
Join Date: Nov 2006
Location: Bedford, Virginia
Posts: 134
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I suffered from Neuropathy in hands, feet, heels, etc. First tried Neurontin, and I later switched to Lyrica which provided relief. Might want to ask your Oncologist about the benefits of Lyrica.
It took me six months after my last Taxol treatment to be able to walk up and down stairs with one foot in front of the other.
It does get better in time...good luck.
__________________
- Diagnosis 06/06 - Stage II-A BC; BC was 2.5 cm, grade 2; ER/PR negative & HER-2/neu positive;
- Mastectomy w/ reconstruction (implant) in 09/06;lymph nodes - negative;
- AC/Cytoxin combo - 4 treatments (dose dense);
- Taxol/Herceptin combo- 12 weekly treatments;
- Completed chemo - 2/07; completed restruction 02/07; reduction of left breast.
- BRCA 1 and 2 negative - 6/15/07;DX high risk for distant recurrence
- MRI, 08/02/07 - NED
- 1 year Anniversary - 09/07; completed Herceptin 11/07.
- Mammo 02/14/08 - NED; MRI - 08/2008 - NED
- 2 year Anniversary - 09/08
- Mammo 02/09 - NED; MRI - 08/09 - NED
- 3rd year Anniversary - 09/09
- 5th Annivery - 09/2011 - NED
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09-04-2007, 09:01 PM
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#6
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Senior Member
Join Date: Dec 2006
Posts: 136
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I just had to reply to your post Weezie----I too have problems walking down stairs with one foot in front of the other; I walk sideways!
I believe my problem is the arimidex for I have been off herceptin since April and I did not have pain like this while on the herceptin.
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Debra
Diag. 11/05 at age 40 triple positive
3.8 cm tumor and 9 mm tumor
Stage IIb/SN positive(no other nodes)Grade 3
Bilat. mastect. 12/05 (Rt.prophylactic) followed with AC/taxol/Herceptin/tamoxifen then switched to arimidex after hysterectomy in 12/06. August 07 switched to Aromasin due to severe jt. pain from Arimidex. Nov. 2011 No more meds and NED!
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09-05-2007, 09:07 AM
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#7
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Senior Member
Join Date: Oct 2006
Location: Louisville KY
Naples FL
Posts: 665
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Hi
I also have six Herceptin treatments left and I am getting worse every
treatment but I take arimidex and the two together or one of them is
the cause. I am trying to finish the herceptin and then see if it is
that or the arimidex.
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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09-05-2007, 09:10 AM
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#8
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Senior Member
Join Date: Feb 2006
Location: South Florida
Posts: 131
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I am so sorry you are in pain. There is truly nothing worse, I hope this stops soon.
I have heard taking Glucosamine works for joint pain and is used by many that take the hormone treatments.
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Lala
DX Fall05 Stage 4 er+ pr+ her2+ liver and bone mets
DX Fall06 Brain mets, Brain mets gone Spring 2007
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09-05-2007, 09:44 AM
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#9
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Senior Member
Join Date: Jun 2007
Posts: 2,210
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Lala, your photo is stunning. Thanks for sharing that..
__________________
Bonnie
Post menopause
May 2007 Core biopsy, Rt breast
ER+, Pr-, HER2 +++, Grade 3
Ki-67: 90%
"suspicious area" left breast
Bilateral mastectomy, (NED on left) May 2007
Sentinel Node Neg
Stage 1, DCIS with microinvasion, 3 mm, mostly removed during the biopsy....
Femara (discontinued 7/07) Resumed 10/07
OncoType score 36 (July 07)
Began THC 7/26/07 (d/c taxol and carboplatin 10/07)
Began Herceptin alone 10/07
Finished Herceptin July /08
D/C Femara 4/10 (joint pain/trigger thumb!)
5/10 mistakenly dx with lung cancer. Middle rt lobe removed!
Aromasin started 5/10
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09-05-2007, 01:10 PM
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#10
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Senior Member
Join Date: Sep 2006
Posts: 38
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Emelie,
I saw your post and had to respond as well. I also have terrible joint pain. The knukles(both hands and feet), wrists and elbows. My primary care doc had me see a specialist for carpol tunnel. They jumped staight to fixing it w/surgery. I am going to wait it out. Kinda a wierd combo of joints. Of course, my onc. says that it is not from Herceptin. I called Genentech and asked about joint pain (arthralgia-spelling?) and they said it was a side effect in the clinical trials. My doc. thinks the joint pain is from estrogen deprevation from tamoxifen. I have been taking gluecosimine for 4 weeks and I believe it is helping! It can't hurt!
Sorry about your pain!!!!
Susan C.
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