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Old 06-11-2017, 01:10 PM   #1
Diane6513
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Join Date: May 2017
Posts: 4
Herceptin and Joint Stiffness

Hi, I was just wondering if anyone has really bad stiff joints from Herceptin. I am on it every three weeks, but is it from that or could it be from the Taxol which I finished in March?

My Oncologist said it was from the Taxol and it will eventually go away. I'd like to know when? First thing in the morning when I get up, my lower legs and feet are like wooden pegs. No bending. And when I work out the next day in the am, my lower back is really stiff, as well as the legs. My finger joints are stiff too.

I was told because of the low dose of the Taxol I had, I would have no long lasting side effects, as I went into it with really good health. Does anyone know of anything to alleviate this?
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Old 06-15-2017, 05:12 PM   #2
Nurse4u2day
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Location: California
Posts: 420
Re: Herceptin and Joint Stiffness

I had severe stiffness, joint and muscle pain once I started on herceptin alone. When I say severe I mean in tears severe. I was seen by a rheumatologist and based on labs they stayed I had inflammation in my body and both the rheumatologist and my oncologist said that this most likely was because of herceptin along with lingering effects of chemo. I even developed 7 trigger fingers. Was placed on routine pain meds and lots of warm showers.
The pain started to subside about two months prior to my last herceptin treatment .
__________________
11/13 Dx IDC left breast
11/19/2013 Inflammatory Breast Cancer stage 3c grade 2 Er- Pr- her2+++
Node involvement suspected based on CT
12/13 port placed
12/13 neoadjuvant DD AC xs 4 rounds started
02/14 taxol/herceptin started every week xs 12 rounds
Herceptin for 1 year
Ki67=23%
BRCA1&2 negative
5/06/14 last round taxol/herceptin. Chemo done!!!
5/07/14 clear CT scan
6/11/14 Bilateral Mastectomy Done
6/15/14 8mm tumor post chemo. Removed by bmx
6/15/14 lymph nodes 0/9
6/15/14 officially Cancer Free
7/11/14 emergency surgery to left breast . Wound refused to heal and broke open. New TE placed
7/28/14 emergency medical procedure now to right breast( post op 6 weeks mastectomy ) wound opens.
8/25/14 - 10/07/14 Radiation
11/24/14 CT of Brain clear
01/23/15 One year Herceptin Complete
02/04/15 Diep done
5/01/15 1 year Ct scan- mass in thymus
6/23/15 repeat CT mass in thymus still present
6/30/15 biopsy thymus 7/03/15 mass Benign! Diagnoses Thymic hyperplasia rebound ( chemo at fault, no long term health effects)
7/08/15 phase 2 diep
11/23/15 phase 2b ( reconstructive surgery with lipo)
03/05/18 Vinnie Myer 3 D nipple tattoos complete.
11/19/2018 5 years since Dx of IBC stage 3c remain NED.
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Old 10-27-2018, 05:17 PM   #3
Lani
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Join Date: Mar 2006
Posts: 4,736
Re: Herceptin and Joint Stiffness

I have read on this site that asking that the benzoyl alcohol preservative be left out of any reconstitution (dilution) of a complete vial of herceptin relieved quite a few of joint complaints and stiffness. They cannot leave the preservative out of vials partially used as someone else uses them, they don't know how long until that additional portion will be used and the preservatives need to be in mix then.

Couldn't hurt to ask to try this. As I said, quite a few here noted leaving this preservative out helped.

Hope this helps!
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Old 10-28-2018, 04:54 PM   #4
valleygirl
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Join Date: Jan 2012
Location: Millsboro, Delaware
Posts: 126
Re: Herceptin and Joint Stiffness

Yes, I agree with Lani. I get my Herceptin with just sterile water. I was in horrible pain before the change
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Old 11-18-2018, 12:37 PM   #5
Nurse4u2day
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Join Date: Feb 2014
Location: California
Posts: 420
Re: Herceptin and Joint Stiffness

While on Herceptin alone I had tremendous bone and muscle pain. Crippling I would say. My doctors agreed it was most likely a combo of the previous treatments but that the herceptin was the straw that broke the camels back . The severe pain lasted until my 10th month of tx and slowly started to resolve .
__________________
11/13 Dx IDC left breast
11/19/2013 Inflammatory Breast Cancer stage 3c grade 2 Er- Pr- her2+++
Node involvement suspected based on CT
12/13 port placed
12/13 neoadjuvant DD AC xs 4 rounds started
02/14 taxol/herceptin started every week xs 12 rounds
Herceptin for 1 year
Ki67=23%
BRCA1&2 negative
5/06/14 last round taxol/herceptin. Chemo done!!!
5/07/14 clear CT scan
6/11/14 Bilateral Mastectomy Done
6/15/14 8mm tumor post chemo. Removed by bmx
6/15/14 lymph nodes 0/9
6/15/14 officially Cancer Free
7/11/14 emergency surgery to left breast . Wound refused to heal and broke open. New TE placed
7/28/14 emergency medical procedure now to right breast( post op 6 weeks mastectomy ) wound opens.
8/25/14 - 10/07/14 Radiation
11/24/14 CT of Brain clear
01/23/15 One year Herceptin Complete
02/04/15 Diep done
5/01/15 1 year Ct scan- mass in thymus
6/23/15 repeat CT mass in thymus still present
6/30/15 biopsy thymus 7/03/15 mass Benign! Diagnoses Thymic hyperplasia rebound ( chemo at fault, no long term health effects)
7/08/15 phase 2 diep
11/23/15 phase 2b ( reconstructive surgery with lipo)
03/05/18 Vinnie Myer 3 D nipple tattoos complete.
11/19/2018 5 years since Dx of IBC stage 3c remain NED.
Nurse4u2day is offline   Reply With Quote
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