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01-29-2014, 08:43 AM
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#1
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Junior Member
Join Date: Jan 2014
Posts: 3
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Need Help Undertstanding Herceptin Side Effects
Hi, I was diagnosed with BC Last February and received treatment.
My Chemo Cocktail was ACT and I started Herceptin with the Taxol. I finished Chemo August 8th and still am receiving Herceptin every 3 weeks.
From the Taxol I experienced the neuropathy, joint and muscle pain and it finally dissipated in Nov/Dec. I thought I was out of the tunnel but now it seems with every herceptin treatment about 10 days later, I feel similar pains.
I was wondering if anyone else experienced similar symptoms and can offer any hints on how to deal with them.
Thanks!!
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01-29-2014, 11:39 AM
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#2
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Senior Member
Join Date: Feb 2007
Location: Cordoba, Mexico
Posts: 672
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Re: Need Help Undertstanding Herceptin Side Effects
Dear Amdoyle,
Welcome to this board. I am a 7-yo survivor and I also received Herceptin for a year every three weeks. Yes, I had muscle and joint pain during Herceptin treatment, I also had a runny nose during same period. That was about it, no other symptoms. Very good quality of life in comparison with Chemo time (I received 6 FAC rounds).
__________________
Dx. June 30th, 2006 at age 43
Lumpectomy rt breast
2.2 cm tumor, 13 nodes all negative
ER-PR+,her2+++
6 FAC
32 Rads
Dx. Lung fibrosis due to radiation
Ended 1 year herceptin in March, 2008
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01-29-2014, 12:39 PM
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#3
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Senior Member
Join Date: Jan 2013
Location: Irvine, CA (Southern CA)
Posts: 414
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Re: Need Help Undertstanding Herceptin Side Effects
Herceptin is known to cause flu like symptoms. I always thought I was coming down with something, then I would remember I was infused x days ago. My last was about a month ago and all symptoms are gone. You're almost there!
__________________
Julie
Live in Orange County, CA
Diagnosed with DCIS Oct. 2012
Bilateral Dec. 19, 2012
IDC, ER/PR-, Her2+++, Grade 3
Stage IIIa
15.6 cm
4/14 nodes + macrometastases
First thing each morning, I try on my bathing suit. Then, nothing worse can happen the rest of the day.
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01-29-2014, 01:22 PM
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#4
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Junior Member
Join Date: Jan 2014
Posts: 3
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Re: Need Help Undertstanding Herceptin Side Effects
Thank you Ladies. Your answers have helped me make sense of what is happening.
The effects are nothing compared to Chemo, thank goodness..
So I have narrowed it down that 10 days after infusion, I do get flu like symptoms and they are gone within a day. Unfortunately this brutal cold is making the neuropathy, which was minimal, act up at the same time.
Since I felt fine right after infusion, I did not think my symptoms were related to Herceptin.
Thanks again for input
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01-29-2014, 05:14 PM
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#5
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Senior Member
Join Date: Sep 2005
Location: Stockton, NJ
Posts: 4,179
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Re: Need Help Undertstanding Herceptin Side Effects
I had headaches, runny nose, achiness and fatigue. Because Herceptin was not available when I was first diagnosed, I ended up truly having Herceptin alone - 4 months after chemo was done and 2 months after radiation was done so I kinda know (for me) what was more Herceptin related.
I also felt that my hair didn't grow as fast and my fingernails were very thin (this could be chemo related as these things could be slow to "reawaken").
__________________
Kind regards
Becky
Found lump via BSE
Diagnosed 8/04 at age 45
1.9cm tumor, ER+PR-, Her2 3+(rt side)
2 micromets to sentinel node
Stage 2A
left 3mm DCIS - low grade ER+PR+Her2 neg
lumpectomies 9/7/04
4DD AC followed by 4 DD taxol
Used Leukine instead of Neulasta
35 rads on right side only
4/05 started Tamoxifen
Started Herceptin 4 months after last Taxol due to
trial results and 2005 ASCO meeting & recommendations
Oophorectomy 8/05
Started Arimidex 9/05
Finished Herceptin (16 months) 9/06
Arimidex Only
Prolia every 6 months for osteopenia
NED 18 years!
Said Christopher Robin to Pooh: "You must remember this: You're braver than you believe and stronger than you seem and smarter than you think"
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01-29-2014, 07:12 PM
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#6
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Senior Member
Join Date: Feb 2013
Location: Lincoln, NE
Posts: 265
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Re: Need Help Undertstanding Herceptin Side Effects
Hello,
I will be finished with my Herceptin end of March, first of April...I also have experienced joint pain...mainly in my hands...in fact, at night when I pull up my covers, that is when my hands ache...kinda odd. I also have had a runny nose, along with my eyes twitching.
Lastly, kinda strange, my lashes will start to grow in...then, they will fall out, not all of them, but some. Not sure what is going on...I'm just thankful I'm alive and nearly done!!
Hang in there...we're all in this together!!
__________________
10/18/12 Found pea size lump right breast
11/7/12 Biopsy
12/14/12 Lumpectomy
1/4/13 Rexcision, NO CLEAR MARGINS!! :(
2/11/13 Mastectomy with Expander Placed
2/15/13 INFECTION at Mastectomy site...emergency Surgery!!! Expander removed :(
DX: DCIS, IDC, Stage 2a, 2.7cm, 1/5 nodes positive
ER/PR-, HER2+++
3/28/13 Port placed
4/1/13 Begin 6 Cycles TCH Therapy
4/1/14 Finished Herceptin!!
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01-29-2014, 07:16 PM
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#7
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Senior Member
Join Date: Mar 2006
Posts: 4,778
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Re: Need Help Undertstanding Herceptin Side Effects
Welcome. Please go to the Herceptin/Tykerb board and search
HER2 Support Group Forums > Herceptin / Tykerb
Please post your two cents on Herceptin "side effects" real or perceived!
There are 644 entrys.
Please also note my previous posts/reposts--about once ever year or two, about asking your infusion nurse to mix your herceptin with saline only, skipping the benzyl alcohol as a trial to see if that avoids your post infusion pains. This has been tried by quite a few on these boards , apparently with good effect.
Skipping mixing with the benzyl alcohol can only be done with the herceptin vial you alone get ie if your weight is such that you need more than one vial, say 1.25 vials, they will only be able to do it with the 1 vial and not the .25 vial as herceptin is too expensive to waste the other .74 (benoyl alcohol is a preservative and necessary if they are not giving the other .75 to someone else right away).
Again, it seems not to have been published but has been noted by quite a few who frequent these boards, that skipping the benzoyl alcohol avoids many of the musculoskeletal aches and pains that some experience.
I am in no position to and am not qualified to make any recommendations--am just reporting what others have found.
Others have asked their oncologist and infusion nurse--to my knowledge noone has reported that either their oncologist or nurse could fathom any harm in skipping mixing the preservative in as long as the infusion will be given upon mixture of the herceptin and saline.
Good luck and please post your experience on theHER2 Support Group Forums > Herceptin / Tykerb
Please post your two cents on Herceptin "side effects" real or perceived!
thread so others can benefit from your experience. I am hoping someday someone will "do something" with the experiences described as pharmaceutical companies seem not to complete their required post-marketing analysis though promised when FDA approval received (there doesn't seem to be as great a motivator as $$$$--once approved, there seems to be much less passion to ensure it is safe, help find ways to avoid side effects in the much larger ** group of people taking the drug)
** compared with those in the original trials which gained drug approval
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