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08-18-2012, 11:14 AM
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#1
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Senior Member
Join Date: Dec 2011
Posts: 585
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Every three weeks or every week for Herceptin
Hi everyone! Ever since I stopped chemo and started the q. 3 week herceptin, I am sore all over all the time. My muscles and joints are just killing me, especially my ankles, feet, etc. Some mornings Im so stiff and sore I feel like Im 90 years old, and Im still working so it is an issue. Does anyone else have this side effect? Do you think that possibly switching back to once a week herceptin might help? Im a wee bit frustrated because this makes working kind of difficult for me, but I need to keep my job for the insurance.
__________________
Diagnosed in October 2011 Stage IV with metastasis to liver.
January 2012 after double mastectomy, started taxotere, carboplatin and herceptin.
Clear.
December 2012 was diagnosed with five brain mets, and had whole brain radiation.
Around July 2014 two mets in brain, one a residual spot and one new one growing in size. Received Cyberknife on both areas
Clear/NED
April 2015 remain NED
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08-18-2012, 11:36 AM
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#2
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Senior Member
Join Date: Sep 2005
Location: Stockton, NJ
Posts: 4,179
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Re: Every three weeks or every week for Herceptin
You can try it. I started with the weekly and then switched to every three weeks because I didn't want the weekly grind (and I travelled alot for my job and didn't want a cancelled flight to make me miss my infusion).
Others may have different experiences.
__________________
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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08-18-2012, 11:54 AM
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#3
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Senior Member
Join Date: Sep 2005
Location: Ontario, Canada
Posts: 752
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Re: Every three weeks or every week for Herceptin
When I was having trouble staying on herceptin my onc switched me from the 3 week to weekly but it made no difference to the side effect on my heart.....not sure about other side effects tho. Intuitively it seems like the right solution though doesn`t it.
All the very best.
Cathy
__________________
Cathy
Diagnosed Oct. 2004 3 cm ductal, lumpectomy Nov. 2004
Diagnosed Jan. 2005 tumor in supraclavicular node
Stage 3c, Grade 3, ER/PR+, Her2++
4 AC, 4 Taxol, Radiation, Arimidex, Actonel
Herceptin for 9 months until Muga dropped and heart enlarged
Restarting herceptin weekly after 4 months off
Stopped herceptin after four weekly treatments....score dropped to 41
Finished 6 years Arimidex
May 2015 diagnosed with ovarian cancer
Stage 1C
started 6 treatments of carboplatin/taxol
Genetic testing show BRCA1 VUS
Nice! My hair came back really curly. Hope it lasts lol. Well it didn't but I liked it so I'm now a perm lady
29 March 2018 Lung biopsy following chest CT showing tumours in pleura of left lung, waiting for results to the question bc or ovarian
April 20, 2018 BC mets confirmed, ER/PR+ now Her2-
Questions about the possibility of ovarian spread and mets to bones so will be tested and monitored for these.
To begin new drug Palbociclib (Ibrance) along with Letrozole May, 2018.
Genetic testing of ovarian tumour and this new lung met will take months.
To see geneticist to be retested for BRCA this week....still BRCA VUS
CA125 has declined from 359 to 12 as of Aug.23/18
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08-18-2012, 12:39 PM
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#4
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Senior Member
Join Date: Mar 2006
Posts: 4,778
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Re: Every three weeks or every week for Herceptin
Several on this board have reported that asking the team who mix up the herceptin to omit mixing in the benzyl alcohol preservative) from your herceptin IV markedly improved the musculoskeletal complaints they had while on herceptin) If you weigh enough to have more than one vial of herceptin mixed up, you will need to share the second vial of herceptin with someone else (it is too expensive to throw away the rest) and that vial has to be mixed up with the preservative as the next person won't be getting herceptin at the same time you are) But let's say you get 1.2 vials of herceptin, then you will only get the tiny amount of preservative that was in the one fifth of a vial rather than 6 times that much (the amount in six one fifth vials)
Feel free to use search function on this --i have posted this at least five times before. Again, this could be in a thread pn what to expect from X treatment (gamma knife, liver embolization, herceptin infusions along with NCI descriptions, personal experiences and "helpful hints from Heloise"
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08-18-2012, 01:35 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: Every three weeks or every week for Herceptin
I agree with Lani about asking to have the herceptin mixed without the benzoyl alcohol. I did that the last few times and it has made a tremendous difference in the amount of joint pain I get.
They just said I had to get in on a day that another person was getting it, which has never been a problem.
What is also interesting is that my urine doesn't smell anymore. I hated the smell the first couple of times I went after getting herceptin. It must be the alcohol that was causing the smell because that is gone also.
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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08-19-2012, 12:31 AM
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#6
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Senior Member
Join Date: Dec 2011
Posts: 585
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Re: Every three weeks or every week for Herceptin
I will ask the next time I get it...I think I had read that before and just not remembered. Thank you all so much.
__________________
Diagnosed in October 2011 Stage IV with metastasis to liver.
January 2012 after double mastectomy, started taxotere, carboplatin and herceptin.
Clear.
December 2012 was diagnosed with five brain mets, and had whole brain radiation.
Around July 2014 two mets in brain, one a residual spot and one new one growing in size. Received Cyberknife on both areas
Clear/NED
April 2015 remain NED
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08-19-2012, 02:52 AM
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#7
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Senior Member
Join Date: Feb 2009
Posts: 1,526
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Re: Every three weeks or every week for Herceptin
I get variable amounts of joint pain, sometimes a little sometimes a lot.so far I haven't been able to work out why but maybe this is a reason. A couple of days after I often feel down and tearful, sometimes notably worse than others. Will now look further into the reasons.
Hugs
Ellie
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08-19-2012, 06:10 AM
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#8
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Junior Member
Join Date: Aug 2012
Location: Kansas
Posts: 2
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Re: Every three weeks or every week for Herceptin
I too have just finished up my chemo will start my herceptin every three weeks tomorrow. During chemo, for what they called "bone pain", they advised I take Claritin, an allergy medicene. They don't know why it works, but it takes away the bone pain. It is a 24 hour allergy pill. I used it several times during regular chemo, you might try that and see if that helps.
__________________
Alyce Newell, Kansas
+++ Positive, 3/2012, breast cancer, chemo of Carboplatin, Taxotere & Herceptin once every 3 weeks. Nearly 2" tumor now UNdetectable. Starting Herceptin once every 3 weeks on 8/20/2012 until next March. When they talked surgery in March, it was nothing but a mastectomy. Now surgery will be a Lumpectomy August 2012, followed up with 30 radiation treatments. Surgery complete, waiting on pathology report from remains of tumor and 2 nodes that they removed.
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08-19-2012, 06:30 AM
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#9
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Senior Member
Join Date: May 2010
Posts: 432
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Re: Every three weeks or every week for Herceptin
As far as I can gather the normal practice here is a 3 weeks gap betweeb two herceptin infusions.Hema had very little side effects from herceptin
__________________
PBK
huband of Hema
Metstatic Breast Cancer Stage 4
Left breast cauliflower 25x20cm
ossousmetstatis in vertbrae secondaries L4=L5secondary
nodules in both liver lobes secondary
Diagnosed 10th March 2010
ER/PR-ve
Her 2 neu +++
Taxotrne Zylotec started 16th March
Herceptin added 5th April.9th Herceptin over on 20th Sep '10.Started on Tykerb and Xeloda on 22nd Oct2010TYKERB 4 TAB A DAY XELODA 4 TAB A DAY ONE WEEK ON ONE WEEK OFFZoletrust infusion every 4 months.Lesion in Brain 3D CRT Radiation started on 1st Feb'12 for 20 days ,5 days a week for 4 weeks.Devloped a small lump in breast.Xeloda stopped from 11th April '12.On Taxol.After 3 cycles of Taxol Taxol stopped.Back to Xeloda regime from 3rd July
Herceptin started again on 27th Dec 2012.Xeloda stopped Navelbin added on 7th February 2013.Now on Tykerb Herceptin and Navelbin
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