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Old 12-04-2009, 01:07 AM   #1
simpo
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Question Side effects?

I have been on a 3 weekly dose of herceptin for just over 4 years. This followed a lumpectomy and radiotheraphy in 1999, then a 2nd diagnosis for which I had 12 rounds of chemo and 6weeks radio again. Mostly I have tolerated the herceptin with minor side effects, the occasional flu like symptoms and that is all. However on the latest visit to my oncologist I mentioned some symptoms of shaking, facial tics, difficulty picking things up, a real weakness in my right side (the left side was where the cancer was) difficulty walking when tired, difficulty standing from a seated position, small micro writing, her immediate response was that I probably had Parkinson's disease (some girls get all the luck!) I am due to have a brain scan to rule out a brain tumor, but I wonder if there is anyone out there who has been on herceptin long term and experiencing similar symptoms. The herceptin continues to do the job it is intended to keep the cancer at bay.
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Old 12-04-2009, 07:26 AM   #2
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Re: Side effects?

I have only been on Hercepting for 12 weekly doses now but have noticed since last week a tick in my right eye. I was/am going to mention it to my onc next week. I don't have the other symptoms other than extreme swelling of ankles and feet (and therefore heavyness when getting up/down) but the onc attributes that to the Taxol.
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4/09 suspicious lump in left breast
5/09 biopsi lead to diagnosis ER/PR -
Her2+.Grade 3,full masectomy left breast,sentinel nodes clear,Stage 1
6/09 Adriamycin + Cytoxan 4 treatments (every 3 weeks) followed by Taxol + Herceptin, 1 treatment weekly for 12 weeks, followed by Herceptin for 40 weeks
MRI Brain 4/10 clear
CT Body 4/10 clear
PET Body 2/11 clear
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Old 12-04-2009, 09:31 AM   #3
Sandra in GA
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Re: Side effects?

I have just finished one year of Herceptin and Tykerb. I had it weekly along with Taxol the first twelve weeks, then every three weeks for the duration. The Taxol did a number on me so I couldn't tell what was causing what. After I was on just the Herceptin and Tykerb, I did have chills and a runny nose which was caused by the Herceptin. I also developed severe muscle cramps in my back and neck from the Herceptin. Sometimes the cramps would also be in my right hand. I had my last Herceptin a little over three weeks ago and the cramping is almost gone. I sincerely hope your problems do turn out to be side effects and nothing more serious.

Sandra
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Diagnosed: 7/25/08 ~ age 63, no family history
Surgery: 8/14/08 Bilateral mastectomy; tumor left breast, node dissection; right prophylactic with expanders: 1/12/10 latisimuss dorsi flap on left side: 9/22/10 implants in
Pathology Report: ER/PR-; HER2+ (3+); Grade 3, StageIII; 3cm tumor plus 21/21 lymph nodes positive; 5cm DCIS
Chemo: A/C; Taxol/Herceptin/Tykerb; phase II study at Mayo adding Tykerb for early stage
Radiation: 25 rads
Vaccine: Walter Reed GP2/AE37 vaccine study ~ last booster 9/17/2012
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Old 12-04-2009, 04:08 PM   #4
simpo
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Re: Side effects?

Thanks for the responses, with regard to the cramping I too get cramping but so does my husband our doctor put me on quinine (or you could drink more gin and tonics) and my husband on magnesium sulphate both drugs have worked a treat.
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Old 12-04-2009, 04:45 PM   #5
Midwest Alice
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Re: Side effects?

Hey, Glad to hear the Herceptin has worked to keep you NED. I have been taking the H for 1 1/2 years.

I have had little eye tic on on eyes somethimes, not a lot. Also leg cramps in the middle of the night a few times. I have osto-arthrist in my hips that has really progressed over the last year. They are making problems with my legs, and back. They are why I had a hard time standing up stright after seated for a long time. I have been seeing a PT twice a week for a couple months.

You are doing the right thing by having a brain MRI. Let us know

Blessings
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04/08 age 50 III IBC Her2+++ ER/PR-8cm 14/14 Double M, Body and Brain CT/PET clear, ? on spine,Muga 53
06/08, 4 A/C, Neulasta
08/08, Herceptin/tax 12 every week
10/08, CT/PET clear, ? on pelvis, hips, MUGA 43, started Enalaprial for heart, Herceptin every 3 weeks
11/08 33Rads; 12/08 MUGA 48
2/09 MRI spine and bone scan, old mets to spine, Chest x-ray, blood work, IV NED,regular CPAP use,Zometa x6, first -flue like symptoms 2 days;Herceptin x3; stage 2 lymphoedema..sleeve and glove
4/09 Brain MRI - CLEAR; MUGA 54
7/09 chest ultrasound,
10/09 PET, brain and spin MRI NED Herceptin only. MUGA 59!!!
1/11 Hip replacement 7/11 Hip 2 replacement
4/12 4 years!! Herceptin
6/12 start reconstruction finish in 12/12
2/14 Herception - 6 years!!!

1 Corinthians 10:13 "No temptation has seized you except what is common to man. And God is faithful; he will not let you be tempted beyond what you can bear. But when you are tempted, he will also provide a way out so that you
can stand up under it."

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Old 12-05-2009, 01:28 AM   #6
simpo
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Re: Side effects?

In response to Alice I note that you have had PET scans while on Chemo and herceptin is this correct? I was told that I couldn''t have a PET scan because chemo and probably herceptin could give false readings when mixed with the 'stuff' they put into you for the PET scan, and my oncologist was reluctant to take me off hercpetin for three months.
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Old 12-05-2009, 07:17 AM   #7
Ellie F
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Re: Side effects?

Hi
I also have had little facial tics whilst on herceptin. It feels a bit like a mini muscle spasm. Like a lot I also have had stiffness in my joints and muscle pain around the rib area
Ellie
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Old 12-05-2009, 10:52 AM   #8
Lani
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Re: Side effects?

Please post your questions about herceptin side-effects on the thread


"please post your two cents on side effects of herceptin, real or perceived"
under

http://her2support.org/vbulletin/showthread.php?t=23696

I started it as a resource where people can check back in location as to whether others had similar experiences as well as a resource should the drug companies every do what they are required by the FDA to do ie, dilligently examine post marketing experiences with their drugs

I saw little evidence that this was being done with any robust effort, thought this would be a way to both gather the information and perhaps shame the drug companies that they were not doing more
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Old 11-05-2010, 11:38 AM   #9
Nancy L
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Re: Side effects?

Lani,

If you feel the drug companies might actually look at our journal of side effects, I think "side effects" should be a forum topic to give it the right visability to new members and to make it as complete as possible. I do not believe the oncology offices report side effects consistently except in the clinical trial environment.
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Old 11-05-2010, 03:53 PM   #10
Nancy L
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Re: Side effects?

How did replies regarding Zithromax get posted on this thread?
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Old 11-05-2010, 10:29 PM   #11
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Re: Side effects?

Nancy -
The spammer on zithro has been removed.
Hope the thread can resume normally now.
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"When I hear music, I fear no danger. I am invulnerable. I see no foe. I am related to the earliest times, and to the latest." H.D. Thoreau
Live in the moment.

MY STORY SO FAR ~~~~
Found suspicious lump 9/2000
Lumpectomy, then node dissection and port placement
Stage IIB, 8 pos nodes of 18, Grade 3, ER & PR -
Adriamycin 12 weekly, taxotere 4 rounds
36 rads - very little burning
3 mos after rads liver full of tumors, Stage IV Jan 2002, one spot on sternum
Weekly Taxol, Navelbine, Herceptin for 27 rounds to NED!
2003 & 2004 no active disease - 3 weekly Herceptin + Zometa
Jan 2005 two mets to brain - Gamma Knife on Jan 18
All clear until treated cerebellum spot showing activity on Jan 2006 brain MRI & brain PET
Brain surgery on Feb 9, 2006 - no cancer, 100% radiation necrosis - tumor was still dying
Continue as NED while on Herceptin & quarterly Zometa
Fall-2006 - off Zometa - watching one small brain spot (scar?)
2007 - spot/scar in brain stable - finished anticoagulation therapy for clot along my port-a-catheter - 3 angioplasties to unblock vena cava
2008 - Brain and body still NED! Port removed and scans in Dec.
Dec 2008 - stop Herceptin - Vaccine Trial at U of W begun in Oct. of 2011
STILL NED everywhere in Feb 2014 - on wing & prayer
7/14 - Started twice yearly Zometa for my bones
Jan. 2015 checkup still shows NED
2015 Neuropathy in feet - otherwise all OK - still NED.
Same news for 2016 and all of 2017.
Nov of 2017 - had small skin cancer removed from my face. Will have Zometa end of Jan. 2018.
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Old 01-17-2011, 12:46 PM   #12
NanaJoni
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Re: Side effects?

Another side effect question?.....has anyone had severe diarhhea with their Herceptin only treatments? I'm doing every three weeks now until the end of May 2011. For about 5-6 weeks the diarhhea has worsened and is now just terrible. Onc doc gave me Lomotil since I was taking about 6-8 Immodium a day just to be able to function and it hasn't helped much. Have eliminated lots from my diet and eat very low fat. Any suggestions will really be appreciated.
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Joni -64 yrs old -
3/01/10: found lump in rt.breast
3/12/10: mammogram/ultrasnd/biopsy-invasive bc & DCIS; 2 tumors (2cm er-/pr-/HER2-& 1.8 cm er-/pr-/HER2+); grade 3;poorly differentiated
3/24/10:sent.node biopsy clear
3/31/10:bi-lateral mx.;atypical ductal hyperplasia-lft side
4/21/10:wound revision-infection/scarring 4/28/10:seromas both sides
5/21/10:port installed,TCH chemo (6 x 3 wks); Herc,-1yr; 33 rad tx after chemo
07/2010: port not working-2nd port didnt'work;3rd port opposite side.
07/2010: 2 weeks after 3rd port surgery, threw 3 pulm. emboli-IVC filter installed; warfarin
08/2010: hospitalizations w/3 of chemos; decision to stop after 4th-on to radiation in Oct 2010;Herc cont.
12/03/2010 - finished 33 rads Hooray!! cont. Herc. every 3 wks
4/2011 - pneumonia ??? Nope-radiation pneumonitis. No more Herc.
5/2011 - NED!!! port out.
8/2011 - clean PET & CT scans.Still NED
7/2012 - Still NED/very blessed.
2/2013 - 6 mos checkup-all clear. CA2729 down frm 13 to 11.
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Old 01-17-2011, 04:50 PM   #13
Sandra in GA
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Re: Side effects?

Joni,
I did have lapatinib along with my Herceptin, so I attributed the diarrhea to the lapatinib. I can tell you what I did that helped and hope you can use some of the info for some relief. I found that a diet very low in fiber was the best for me. I avoided fresh veggies and fresh fruits. I found a low fiber diet and it suggested eating canned fruits and only green beans and asparagus. You could also have rice, potatoes (baked seemed especially good), broiled meats. It also suggested eating white bread instead of whole wheat. Whole wheat and dairy products seemed to really set me off. In other words, avoid all that healthy diet you are used to!

Along with that, my onc and study nurse suggested I take two Immodium and one Lomotil at the first sign of cramping or any other symptom. This was the only way I could get a grip on my problem. Usually, if I was careful, after taking the combo of the drugs, I would be sympton free for about three days.

The good thing is once I finished my treatments, my tummy returned to normal within days and I was able to return to a normal diet quickly. Good luck!

Sandra
__________________
Diagnosed: 7/25/08 ~ age 63, no family history
Surgery: 8/14/08 Bilateral mastectomy; tumor left breast, node dissection; right prophylactic with expanders: 1/12/10 latisimuss dorsi flap on left side: 9/22/10 implants in
Pathology Report: ER/PR-; HER2+ (3+); Grade 3, StageIII; 3cm tumor plus 21/21 lymph nodes positive; 5cm DCIS
Chemo: A/C; Taxol/Herceptin/Tykerb; phase II study at Mayo adding Tykerb for early stage
Radiation: 25 rads
Vaccine: Walter Reed GP2/AE37 vaccine study ~ last booster 9/17/2012
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Old 01-17-2011, 07:03 PM   #14
NanaJoni
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Smile Re: Side effects?

Sandra - thanks for the reply. I will definitely be trying your regimen. It will be easy for me - I love rice and baked potatoes and won't mind the canned fruit. I had already gone to the white bread but will forgo my morning banana for some canned peaches. I've been scared to eat anything especially if I have something planned outside the house. And I was very glad to hear that long term use of the lomotil and/or immodium didn't have lasting effects. I'm seeing the nurse practitioner at my onc's office tomorrow morning and will clear this with her but can't see any harm in trying it. At this point I'll gladly try anything - especially something that has worked well for a fellow HER2 sister. thanks again.
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Joni -64 yrs old -
3/01/10: found lump in rt.breast
3/12/10: mammogram/ultrasnd/biopsy-invasive bc & DCIS; 2 tumors (2cm er-/pr-/HER2-& 1.8 cm er-/pr-/HER2+); grade 3;poorly differentiated
3/24/10:sent.node biopsy clear
3/31/10:bi-lateral mx.;atypical ductal hyperplasia-lft side
4/21/10:wound revision-infection/scarring 4/28/10:seromas both sides
5/21/10:port installed,TCH chemo (6 x 3 wks); Herc,-1yr; 33 rad tx after chemo
07/2010: port not working-2nd port didnt'work;3rd port opposite side.
07/2010: 2 weeks after 3rd port surgery, threw 3 pulm. emboli-IVC filter installed; warfarin
08/2010: hospitalizations w/3 of chemos; decision to stop after 4th-on to radiation in Oct 2010;Herc cont.
12/03/2010 - finished 33 rads Hooray!! cont. Herc. every 3 wks
4/2011 - pneumonia ??? Nope-radiation pneumonitis. No more Herc.
5/2011 - NED!!! port out.
8/2011 - clean PET & CT scans.Still NED
7/2012 - Still NED/very blessed.
2/2013 - 6 mos checkup-all clear. CA2729 down frm 13 to 11.
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