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06-25-2012, 12:26 PM
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#1
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Senior Member
Join Date: Jun 2011
Posts: 37
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Joint pain all over....osteoarthritis?? Herceptin side effect?
Hello friends,
I continue to have all over joint pain and stiffness....after just sitting for more than ten minutes or so. Clear bone scan and clear CT scans one month ago...my oncologist suggested that I may have osteoarthritis (I'm only 34!!)....maybe from chemo?? They suggested taking Osteo-Bi-Flex. Anyone else have joint pain like this? I have four more Herceptin to go. Of course, my oncologist is reluctant to say that it is from the H...."it MAY be from Herceptin". 
__________________
Dx at 33 in May 2011
IDC and DCIS in left breast
ER-/PR-Her2+
Stage 2A (T1aN1miM0)
Left Mastectomy
A/C x 4
Taxol and Herceptin x 12
Herceptin every three weeks
Prophylactic Right Mastectomy and expanders on both sides June 28, 2012
May 2012 Bone scan, CT, breast MRI all normal
September 2012 Finished Herceptin
February 25, 2013 exchange surgery and port out
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06-25-2012, 01:54 PM
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#2
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Senior Member
Join Date: Feb 2009
Posts: 1,526
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Re: Joint pain all over....osteoarthritis?? Herceptin side effect?
Hi
Herceptin joint pain is a well recorded side effect and I feel it's effects are cumulative.I also believe it takes a very long time to get the effects of taxol out of your system, I had severe rib pain for ages after I had finished.hopefully it will just settle down on its own once you have finished with herceptin
Ellie
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06-25-2012, 02:43 PM
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#3
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Senior Member
Join Date: Jan 2012
Location: Boulder Colorado as of January 2013
Posts: 391
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Re: Joint pain all over....osteoarthritis?? Herceptin side effect?
My wife, Nina, is sore right now and started steroids today to try to deal with it. I had not heard about the Herceptin causing arthritis, and it would be rheumatoid arthritis in all probability (ie the body attacking the Herceptin).
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06-26-2012, 11:11 AM
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#4
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Senior Member
Join Date: Sep 2005
Location: Naples FL
Posts: 1,744
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Re: Joint pain all over....osteoarthritis?? Herceptin side effect?
I had horrible joint pain...I started Herceptin and Arimidex at the same time so was not really able to blame one or the other. It lasted for most of a year, subsiding gradually. Even now, 6 years later, I have never gotten the strength back in my knees...however...I'M ALIIIIIIIIIIIIVE!!!!!!!!!!!!
__________________
 Suzan W.
age 54 at diagnosis
5/05 suspicious mammogram-left breast
5/05 biopsy-invasive lobular carcinoma with LCIS,8mm tumor,stage 1 grade 2, ER+ PR+ Her2+++
6/14/05 bilateral mastectomy, node neg. all scans neg.
Oncotype DX-high risk
8/05-10/05 4 rounds A/C
10/05 -10/06 1 yr. herceptin
arimidex-5 years
2/14/08 started daily self administered injections..FORTEO for severe osteoporosis
7/28/09 BRCA 1 negative BRCA2 POSITIVE
8/17/09 prophylactic salpingo-oophorectomy
10/15/10 last FORTEOinjection
RECLAST infusion(ostoeporosis)
6/14/10 5 year cancerversary!
8/2010-18%increase in bone density!
no further treatments
Oncologist says, "Go do the Happy Dance"
I say,"What a long strange trip its been"
'One day at a time'
6-14-2015. 10 YEAR CANCERVERSARY!
7-16 to 9-16. Extensive (and expensive) dental work done to save teeth. Damage from osteoporosis and chemo and long term bisphosphonate use
6-14-16. 11 YEAR CANCERVERSARY!!
7-20-16 Prolia injection for severe osteoporosis
2 days later, massive hive outbreak. This led to an eventual dx of Chronic Ideopathic Urticaria, an auto-immune disease from HELL.
6-14-17 12 YEAR CANCERVERSARY!!
still suffering from CIU. 4 hospitilizations in the past year
as of today, 10-31-17 in remission from CIU and still, CANCER FREE!!!
6-14-18 13 YEAR CANCERVERSARY!! NED!!
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06-28-2012, 11:34 AM
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#5
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Senior Member
Join Date: Sep 2005
Location: Maryland
Posts: 30
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Re: Joint pain all over....osteoarthritis?? Herceptin side effect?
After completing eight rounds of TCH, I remained on Herceptin for the last 7.5 years. The joint pain is about the same almost 8 years later. I think that Herceptin is definitely a culprit when comes to joint pain. I have just been diagnosed with recurrence in my liver, so it will be interesting to see if the joint pain increases on the new meds.
__________________
Margo
Diagnosed 08/2004 @ 45; Metaplastic Breast Cancer (MpBC)
Stage IV, HER2 3+, ER-/PR-, Met to Liver
08/2004 - Neo-adjuvant Taxotere/Carboplatin/Herceptin (TCH) - 4 rounds.
09/2004 - Herceptin - Weekly.
11/2004 - Liver RFA, followed w/TCH - 2 rounds.
12/2004 - Lumpectomy, axillary node dissection, followed w/TCH - 2 rounds.
05/2005 - Radiation - Breast, shoulder, neck (left side) - 35X
09/2005 - Developed severe osteoporosis - Boniva - monthly
04/2008 - Herceptin - Every 3 weeks (changed from weekly).
05/2012 - Mets: 3 new liver and 2 lymph nodes.
06/2012 - Start 16 rounds Navelbine and Herceptin weekly.
11/2012 - Liver resection, RFAs (8), lymphadenectomy (2), cholecystectomy.
12/2012 - Herceptin and Letrozole.
05/2014 - Mets: 5 aortocaval nodes & 1 mesenteric.
06/2014 - Herceptin/Perjeta/Taxotere - 6 rounds.
10/2014 - Herceptin / Perjeta - Open ended
04/2015 - Progression: Porta hepatic node, 2 aortocaval nodes.
05/2015 - Exploratory surgery treating progression, 12 nodes removed.
07/2015 - Restart Herceptin / Perjeta
01/2016 - Progression 8 nodes.
02/2016 - Starting T-DM1 (Kadcyla) - Open ended.
07/2017 - Progression.
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06-29-2012, 03:19 AM
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#6
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Senior Member
Join Date: Mar 2006
Posts: 4,780
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Re: Joint pain all over....osteoarthritis?? Herceptin side effect?
estrogen deficiency (the goal of AIs and perhaps the major mechanism of action of chemotherapy agents in premenopausal women with ER+ tumors) is well known to cause stiffness and associated joint pain
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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06-29-2012, 06:56 AM
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#7
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Member
Join Date: Sep 2011
Location: Melbourne,
Australia.
Posts: 18
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Re: Joint pain all over....osteoarthritis?? Herceptin side effect?
I have nothing but joint pain.
I have 3 more Herceptin to go and I am in constant joint pain and feeling like crap.
I am tempted to get some Cortisone injections in my elbows for bi-lateral epicondilitis at this point.
Drugs are my best option but if anyone knows of anything else please enlighten us,
cheers.
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06-29-2012, 08:55 AM
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#8
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Senior Member
Join Date: Sep 2005
Location: Maryland
Posts: 30
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Re: Joint pain all over....osteoarthritis?? Herceptin side effect?
Lani,
Thank you for the comment about the "benzoyl alcohol preservative". I have been off-line for a while and missed the original comment. Next week, I will ask if the change is possible.
__________________
Margo
Diagnosed 08/2004 @ 45; Metaplastic Breast Cancer (MpBC)
Stage IV, HER2 3+, ER-/PR-, Met to Liver
08/2004 - Neo-adjuvant Taxotere/Carboplatin/Herceptin (TCH) - 4 rounds.
09/2004 - Herceptin - Weekly.
11/2004 - Liver RFA, followed w/TCH - 2 rounds.
12/2004 - Lumpectomy, axillary node dissection, followed w/TCH - 2 rounds.
05/2005 - Radiation - Breast, shoulder, neck (left side) - 35X
09/2005 - Developed severe osteoporosis - Boniva - monthly
04/2008 - Herceptin - Every 3 weeks (changed from weekly).
05/2012 - Mets: 3 new liver and 2 lymph nodes.
06/2012 - Start 16 rounds Navelbine and Herceptin weekly.
11/2012 - Liver resection, RFAs (8), lymphadenectomy (2), cholecystectomy.
12/2012 - Herceptin and Letrozole.
05/2014 - Mets: 5 aortocaval nodes & 1 mesenteric.
06/2014 - Herceptin/Perjeta/Taxotere - 6 rounds.
10/2014 - Herceptin / Perjeta - Open ended
04/2015 - Progression: Porta hepatic node, 2 aortocaval nodes.
05/2015 - Exploratory surgery treating progression, 12 nodes removed.
07/2015 - Restart Herceptin / Perjeta
01/2016 - Progression 8 nodes.
02/2016 - Starting T-DM1 (Kadcyla) - Open ended.
07/2017 - Progression.
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