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02-11-2012, 04:01 PM
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#1
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Senior Member
Join Date: Jun 2011
Posts: 37
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Herceptin and chills/joint pain?
Just wondering if anyone else has experienced chills (no fever) and/or joint pain while on Herceptin only? I'm taking 800 mg of Ibuprofen two to three times a day and the joint pain improves but doesn't go away completely. Also very stiff.... I'm not trying to complain because it's a small price to pay if it saves my life!
dx at 33.....stage 2A (T1aN1miM0) ER-/PR- Her2+ A/C then Taxol with Herceptin...now on Herceptin only once every 3 weeks
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02-11-2012, 04:14 PM
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#2
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Senior Member
Join Date: Dec 2009
Posts: 562
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Re: Herceptin and chills/joint pain?
I have severe joint pain but it isn't because of herceptin. My doctor thinks it's lack of estrogen - chemo killed my ovaries. The only SE I have from herceptin is a runny nose!
__________________
 http://butdoctorihatepink.com
08/17/09 Dx'd.
Multifocal/multicentric IDC, largest 3.4 cm, associated ADH, LCIS, DCIS
HER2+ ER+/PR- Grade 3, Node Negative
10/20/2009: Right mastectomy, reconstruction with TE
12/02/2009: Six rounds TCH, switched to Taxol halfway through due to neuropathy
03/31/2010: Finished chemo
05/01/2010: Began tamoxifen, the worst drug ever
11/18/2010: Reconstruction completed
12/02/2010: Finished herceptin
05/21/2011: Liver Mets. Quit Tamoxifen
06/22/2011: Navelbine/Zometa/Herceptin
10/03/2011: Liver Resection, left lobe. Microwave ablation, right lobe - going for cure!
11/26/2011: C-Diff Superbug Infection, "worst case doctor had seen in 20 years"
03/28/2012: Progression in ablated section of the liver - no more cure. Started Abraxane, continue herceptin/zometa
10/10/2012: Progression continues, started Halaven, along with herceptin and zometa.
01/15/2013: Progression continues, started Gemzar and Perjeta, an unusual combo, continuing with herceptin and zometa
03/13/2013: Quit Gemzar, body just won't handle it. Staying on herceptin, zometa and perjeta.
04/03/2013: CT shows 50% regression in tumor, so am starting back on Gemzar with dose reduction, staying with perjeta/herceptin/zometa. Can't argue with success!
05/09/2013: Discussing SBRT with Radiology due to inability of bone marrow to recover from chemo.
06/07/2013: Fiducial placement for SBRT
07/03/2013: Chemo discontinued, on Perjeta, Herceptin and Zometa alone
07/25/2013: SBRT (gamma knife) begins
08/01/2013: SBRT completed
08/15/2013: STABLE! continuing with Perjeta, Herceptin, Zometa
06/18/2014: ***** NED!!!!***** continuing with Perjeta, Herceptin, Zometa
01/29/2014: Still NED. continuing with Perjeta, Herceptin. Zometa lowered to every 3 months instead of monthly.
11/08/2015: Progression throughout abdomen and lungs. Started TDM-1, aka Kadcyla. Other meds discontinued. Remission was nice while it lasted.
5/27/18: Stable. Kadcyla put me right back in the barn. I have two teeny spots on my lungs that are metabolically inactive, and liver is clean.
I’m beating this MFer. I was 51 when this started and had two kids, 22 and 12. Now I’m 60. My oldest got married and trying to start s family. My youngesg graduates from Caltech this June. My stepdaughter gave me grandkids. Life is fantastic.
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02-11-2012, 09:54 PM
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#3
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Senior Member
Join Date: Oct 2006
Location: Southern California
Posts: 900
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Re: Herceptin and chills/joint pain?
I had constant chills with Herceptin. It felt like I was freezing cold from the inside and nothing I did helped warm me. Also had joint pain and stiffness but I'm not sure if it was from the Herceptin, Tamoxifen, or lasting effects of chemo. My nose was constantly dripping so I never went anywhere without tissue.
__________________
Gerri
Dx: 11/23/05, Lumpectomy 12/12/05
Tumor 2.2 cm, Stage II, Grade 3, Sentinel Node biopsy negative
ER+ (30%) /PR+ (50%), HER2+++
AC X 4 dose dense, Taxol X 4 dose dense
Herceptin started with 2nd Taxol, given weekly until chemo done
then given every 3 weeks for one year ending on March 16, 2007
Radiation 30 treatments
Tamoxifen - 2 yrs (pre-menopausal)
May 2008 - Feb 2012 Femara
Aug 2008 - Feb 2012 Zometa every 6 months
March 2012 - Stop Femara, now Evista for bone strengthening
********** Enjoy the little things, for one day you may look back and realize they were the big things. - Robert Brault
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02-18-2012, 05:08 AM
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#4
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Member
Join Date: Nov 2011
Location: San Diego, California
Posts: 16
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Re: Herceptin and chills/joint pain?
gqmom
When I first started Herceptin, I was told about the fever, chills and possile bone pain. Luckily I didn't experience any of those. But..... and I don't mean this lightly, I have had what is called "loading doses" 2, in the past 6 months. Both times, the most recent as of last week, I had terrible chills, then a fever of 100.5 and I could not get warm. I do believe the joint/bone pain was the worst I have ever experienced. The only consulation is that is only lasted 24-48 hours. Hang in there!!
__________________
 6/09 I found lump in left breast
7/09 & 8/09 Confirmed DCIS in breast and lymph nodes
9/09 Left breast mastectomy incl lymph nodes. er-/pr-, HER2+, Stage 3A.
10/09 Received phone call to schedule my liver biopsy. Stage IV extensive liver mets (!) ER/PR- Her2+++s
11/09 11/Port surgery
11/09 Weekly Taxol & Herceptin.
2/10 Completed 9 rounds -neuropathy in feet.
2/10 CT scan showed NO CHANGE.
3/10 PET scan came up NED.
4/10-10/10 Continued on Herceptin, 3 week cycle.
11/10 Blood test reveals Liver enzymes are high. CT, suggests progression
12/10 Changed doctors. TDM1 Trial or Tykerb/ Xeloda?
1/11 Tissue expander-could not qualify for trial.
2/11 -5/11 Tykerb/Xeloda -neuropathy -not working.
8/11Pulmonary Embolism -Now on daily shots
5/11-10-11 Everolimus & Navelbine &Herceptin trial Removed- Pul Emb, liver progression &fatty
10/11 -current, 3 wk Herceptin plus Tykerb
12/11- Abcess and infection upper lip- stopped Tykerb
01/12 CT Shows no progression in liesions, back on Tykerb
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02-18-2012, 08:23 PM
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#5
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Senior Member
Join Date: Oct 2005
Location: Lakeville, Minnesota
Posts: 199
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Re: Herceptin and chills/joint pain?
I had severe joint pain, and realized it is from the Herceptin. I went off of it in Oct, to do a trial and within a month all of my joint pain was gone.
I just had my first dose again a few days ago, and I am worried that the pain will be starting again.
I am planning on seeing a physical therapist to help me with exercises that could alleviate some of the pain. I also ice, and sit in a whirlpool tub, which also seems to help.
Laurie
__________________
diagnosed stage 2- 3/2005
4.5 cm & 2+ nodes , er/pr- & HER2+
4 AC
12 taxol/Herceptin
Year of Herceptin
liver mets- July-2010
7 taxotere/Herceptin
RFA- Feb.2011
NED
U of Wa vaccine trial-oct 2011-Feb 2012
Herceptin/tykerb
Ned - 2 1/2 years
Herceptin & perjeta
Ned 3 years
Herceptin- reducing treatments , due to s/e, to 5-6 a year
NED- 3 1/2 years
Ned - 4 years
2/15- stopped herceptin - on no treatment
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02-19-2012, 11:56 PM
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#6
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Member
Join Date: Nov 2011
Location: San Diego, California
Posts: 16
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Re: Herceptin and chills/joint pain?
Lauriesh,
I am sorry to hear about your continous joint pain. I didn't know it could become chronic. But, my question would be, is the treatment working?
I am currrenly on Herceptin and Tykerb and even though my last CT showed my cancer was not progressing, I have alot of side effects from the Tykerb.
Hope the physical therapist will be able to help you.
I've been considering accupressure/accupuncture. Ever tried it?
Good luck.
Lettik
__________________
6/09 I found lump in left breast
7/09 & 8/09 Confirmed DCIS in breast and lymph nodes
9/09 Left breast mastectomy incl lymph nodes. er-/pr-, HER2+, Stage 3A.
10/09 Received phone call to schedule my liver biopsy. Stage IV extensive liver mets (!) ER/PR- Her2+++s
11/09 11/Port surgery
11/09 Weekly Taxol & Herceptin.
2/10 Completed 9 rounds -neuropathy in feet.
2/10 CT scan showed NO CHANGE.
3/10 PET scan came up NED.
4/10-10/10 Continued on Herceptin, 3 week cycle.
11/10 Blood test reveals Liver enzymes are high. CT, suggests progression
12/10 Changed doctors. TDM1 Trial or Tykerb/ Xeloda?
1/11 Tissue expander-could not qualify for trial.
2/11 -5/11 Tykerb/Xeloda -neuropathy -not working.
8/11Pulmonary Embolism -Now on daily shots
5/11-10-11 Everolimus & Navelbine &Herceptin trial Removed- Pul Emb, liver progression &fatty
10/11 -current, 3 wk Herceptin plus Tykerb
12/11- Abcess and infection upper lip- stopped Tykerb
01/12 CT Shows no progression in liesions, back on Tykerb
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02-20-2012, 08:59 AM
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#7
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Senior Member
Join Date: Oct 2005
Location: Lakeville, Minnesota
Posts: 199
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Re: Herceptin and chills/joint pain?
Hi Lettik,
Yes, it is working. On Feb. 25, I will be one year NED. I only take 750 mg of tykerb,(3 pills) and if the side effects get too bad, I will take a break for a awhile to let my digestive system get back to normal.
I have never tried accupuncture.
I hope the combo works for you.
Laurie
__________________
diagnosed stage 2- 3/2005
4.5 cm & 2+ nodes , er/pr- & HER2+
4 AC
12 taxol/Herceptin
Year of Herceptin
liver mets- July-2010
7 taxotere/Herceptin
RFA- Feb.2011
NED
U of Wa vaccine trial-oct 2011-Feb 2012
Herceptin/tykerb
Ned - 2 1/2 years
Herceptin & perjeta
Ned 3 years
Herceptin- reducing treatments , due to s/e, to 5-6 a year
NED- 3 1/2 years
Ned - 4 years
2/15- stopped herceptin - on no treatment
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02-20-2012, 02:07 PM
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#8
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Senior Member
Join Date: Apr 2011
Location: Michigan
Posts: 1,173
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Re: Herceptin and chills/joint pain?
Laurie, We look forward to your post on the 25th How wonderful for you and your family!!!!
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02-20-2012, 02:57 PM
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#9
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Senior Member
Join Date: Mar 2006
Posts: 4,778
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Re: Herceptin and chills/joint pain?
some ladies here reported that if you ask the pharmacist mixing up the herceptin for use for you to leave out the benzoyl alcohol (preservative, reportedly only needed if there is some left in the vial to give someone else later) from the vial only given to you, it cuts down on the total preservative infused (only that from the vial shared with another patient which requires the preservative be mixed with it) that they had less joint pain. May be worth inquiring about.
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02-20-2012, 06:08 PM
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#10
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Member
Join Date: Sep 2011
Posts: 12
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Re: Herceptin and chills/joint pain?
For the shaking chills associated with herceptin, my docs gave me low dose Demerol. Worked like a charm. Though they couldn't tell me the exact mechanism, they thought it was something about the opiate receptor, which makes sense...
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02-20-2012, 09:12 PM
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#11
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Member
Join Date: Nov 2011
Location: San Diego, California
Posts: 16
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Re: Herceptin and chills/joint pain?
Lauriesh,
I was sooooo happy to hear the treatment is working and you are NED for almost a year. Kudos!!
Great suggestion from Lani and it seems it would be worth a try.
Do you all get "premeds" before Herceptin treatments? I get (2 tylenol, and a benedryl).
Just my opinion, but I have no faith that tylenol works for anything. Too much can damage the liver. Scary for those of us with liver met. The benedryl just makes me tired.
Everyone is different.
Take care
Lettik
__________________
6/09 I found lump in left breast
7/09 & 8/09 Confirmed DCIS in breast and lymph nodes
9/09 Left breast mastectomy incl lymph nodes. er-/pr-, HER2+, Stage 3A.
10/09 Received phone call to schedule my liver biopsy. Stage IV extensive liver mets (!) ER/PR- Her2+++s
11/09 11/Port surgery
11/09 Weekly Taxol & Herceptin.
2/10 Completed 9 rounds -neuropathy in feet.
2/10 CT scan showed NO CHANGE.
3/10 PET scan came up NED.
4/10-10/10 Continued on Herceptin, 3 week cycle.
11/10 Blood test reveals Liver enzymes are high. CT, suggests progression
12/10 Changed doctors. TDM1 Trial or Tykerb/ Xeloda?
1/11 Tissue expander-could not qualify for trial.
2/11 -5/11 Tykerb/Xeloda -neuropathy -not working.
8/11Pulmonary Embolism -Now on daily shots
5/11-10-11 Everolimus & Navelbine &Herceptin trial Removed- Pul Emb, liver progression &fatty
10/11 -current, 3 wk Herceptin plus Tykerb
12/11- Abcess and infection upper lip- stopped Tykerb
01/12 CT Shows no progression in liesions, back on Tykerb
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02-21-2012, 03:34 PM
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#12
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Member
Join Date: Jun 2011
Posts: 22
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Re: Herceptin and chills/joint pain?
I have stiffness and muscle pain on Herception, and the drippy nose. I've had 3 Herceptin-only infustions so far, and it seems that the muscle pain was a little less this time around. Hope that pattern continues.
Lettik, I don't get any pre-meds with my Herceptin infusion.
Maryann
__________________
Found lump during a SBE
May 19, 2011 - Diagnosed IDC
June 9, 2011 - Lumpectomy, 2 tumors in left breast. One 1.3 cm and the second 1.5 cm, HER2+, er-/pr-, er+/pr-, stage 2a, type 3, 12/1+ lymph nodes.
June 22, 2011 - Drain out. Yay!
July 7, 2011 - Start chemo. 4x A/C, 12x weekly Taxol/Herceptin, Herceptin 1 year
June 28, 2011 - Port installed
July 14, 2011 - Ultrasound for mass on thyroid.
July 22, 2011 - Biopsy on thyroid mass. Results: inconclusive. Another biopsy scheduled in a couple of months.
September 8, 2011 - A/C chemo done. On to Taxol/Herceptin.
October 19, 2011 - 2nd biopsy of thyroid mass. Benign. Yipee!
December 16, 2011 - Final chemo!!!
January 11, 2012 - Started 33 rads
February 24, 2012 - Finished rads! Herceptin only now.
September 26, 2012 - Finished Herceptin.
www.CaringBridge.org/maryannschwab/visit
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02-29-2012, 10:20 AM
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#13
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Senior Member
Join Date: Sep 2005
Location: Los Angeles
Posts: 430
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Re: Herceptin and chills/joint pain?
during herceptin only, I had joint pains that I thought i had bone cancer too. Took vicadent-did nothing.
I took Iburofen and went and lied down in bed, almost every night by 7pm and that worked.
I did not try massage but you may want to find a good mmt massager, sometimes as part of a chiropractor's office, that could massage your joints. Some are covered by insurance.
Good luck
Maria (mcs)
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03-01-2012, 09:02 AM
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#14
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Member
Join Date: Oct 2010
Posts: 18
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Re: Herceptin and chills/joint pain?
I've experienced joint pain/discomfort, constant chills, and a runny nose since I started taking Herceptin. Since I've been taking a slew of other meds along the way, I never associated it with Herceptin alone. But, it makes sense after reading all of these posts.
I wear wool socks most days in the winter to help stay warm. I also take 2 ibuprofen every night before I go to bed. It helps me sleep better because I'm not concentrating on the achiness.
Thanks for posting this question - it's good to know we're not alone with our side effects...
__________________
6/09 - self exam - lump!
8/09 –Dx - IDC, left breast. Suspicious mass,right breast (more testing required).
9/09 - Double mast/cholecystectomy /nodes removed. IDC confirmed, right breast. liver/bone mets. ER-/PR -/Her2 +. BRCA 1/2 -.
10/09 - Started Taxotere, Carboplatin, Herceptin, Zometa. Hospitalized with Tetany.
1/10 - Finished Taxotere, Carbo, continued Herceptin, Zometa. PET/CT - improvement.
2-3/10 - Rads (25 rounds).
8/10 – inflammation vs. malignancy?
1/11 – progression. started Xeloda.
9/11 – progression. pancreatitis or tumor? Chest ‘rash’ appeared.
10/11 – confirmed pancreatitis. Halted Xeloda.
11/11 – skin mets confirmed.
12/11 - started Tykerb, back on Xeloda.
1/12 – cut Xeloda dose in ½. skin mets fading!
4/12 - no more Xeloda. skin mets resolved.
8/12 - brain mets found.
9/12 - gamma knife and fractionated brain radiation.
1/13 - progression throughout body. brain mets shrunk/resolved. no more Tykerb.
2/13 - starting T-DM1 trial.
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