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05-08-2006, 06:51 AM
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#1
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Senior Member
Join Date: May 2006
Posts: 85
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Herceptin SIde effects
Just wanted to see if others had simliar side effects with herceptin.
can't sleep
always tired
mood swings
pain in hands and feet
Thanks
John
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05-08-2006, 11:04 AM
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#2
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Senior Member
Join Date: Sep 2005
Location: Naples FL
Posts: 1,744
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can't sleep (since diagnosis) taking sleeping meds (trazadone)
swollen ankles
pain in joints (also caused by Arimidex)
runny nose
scratchy eyes
but...all tolerable and worth it!!!
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05-08-2006, 12:11 PM
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#3
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Senior Member
Join Date: Mar 2006
Location: Northern Va
Posts: 84
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JOhn,
I have
pain in hands and feet (feet mostly) achy sensitive kind of pain
tired all the time
I take ativan every night to sleep, since I didn't sleep the first month on chemo. Tried to cut back but dr. said not to worry about that right now.
Rash with first infusion, now on weekly doses.
Runny nose as well.
__________________
Cheryl
Stage II, Grade III, ER+/PR-, Her2 3.0 amplified, N 0/5, dx 9/05, 39 yrs
Right Mastectomy, immediate tram flap reconstruction
4 AC, 4 Taxotere finished 3/15/06
Currently on Herceptin and Tamoxifen
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05-08-2006, 12:51 PM
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#4
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Senior Member
Join Date: Sep 2005
Posts: 414
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3 out of 4
can't sleep
always tired
mood swings
I sure hope that it is the herceptin doing this, since I am looking forward to the return of normal life in October.
I started herceptin late, long after I had finished my main treatment and am on no other meds, so I am sure that it is herceptin.
On the other hand, I figure that herceptin's side effects are quite reasonable given the probable benefits.
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05-09-2006, 04:51 PM
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#5
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Senior Member
Join Date: Dec 2005
Location: indianapolis, indiana
Posts: 1,544
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Wow, I thought I was crazy till I read that y'all can't sleep either. This makes me feel a lot better. I've been on herceptin alone since June 05, and the sleeplessness started in September. And the fatigue is as bad as it was during chemo. I also have the pain in my hands and feet, especially if I have sat down for awhile.
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05-09-2006, 07:07 PM
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#6
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Senior Member
Join Date: May 2006
Posts: 85
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Thanks
Any headaches also with Herceptin? Thanks for the replies!
John
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05-09-2006, 07:20 PM
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#7
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Senior Member
Join Date: Jan 2006
Location: New Jersey / Miami, Fl
Posts: 50
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Joint pain
very specifc joint pain
insomnia
minor nose bleeds
I have joint pain in my both my thumbs that waxes and wanes since I began Herceptin. I already told my onc about it and was told that I could go see another doc if the pain gets too bad. Lately when I wake I can feel the bones grind together. I started herceptin 12/21/05
I cannot sleep at all and therefore am always tired and sluggish. I already used up my ativan and cannot get anymore. Now I am trying melatonin (OTC) but it doesn't seem to help.
I am pretty sure I have always been a bit moody, so I hesitate to blame the drug.
Nose bleeds that are very minor, usually at night, so that I wake with some dried blood in my nose.
__________________
Dx @ 29 years old in 8/05
Stage 1
2 IDC tumors (.7 cm and .5 cm)
4 cm DCIS
0 nodes
ER-/PR-
Her2+ (5.33 FISH)
AC (4 cycles)
Bi-lat mastectomy w/ lat flap recon + cohesive gel implants
1 year (every 3 weeks) Herceptin
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05-09-2006, 08:15 PM
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#8
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Senior Member
Join Date: Sep 2005
Posts: 285
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Tired alot, but I think it's the chemo.
Constantly runny nose and eyes.
Love and light,
Lisa
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05-09-2006, 08:34 PM
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#9
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Senior Member
Join Date: Apr 2006
Posts: 46
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Side Effects
I have been having major trouble both falling asleep and staying asleep. I feel better knowing it may be the Herceptin. I, too, am tired all the time.
Allergies are killing me. Constantly congested. Some itchy ratches.
Have pain in only one finger joint.
Mary
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05-09-2006, 08:43 PM
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#10
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Senior Member
Join Date: Apr 2006
Posts: 46
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Forgot to Mention...
My onc says it's not caused by the Herceptin, but I am continually plagued by mouth sores
also thin and breaking nails
Mary
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05-10-2006, 07:19 AM
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#11
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Senior Member
Join Date: Sep 2005
Posts: 52
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While I was on chemo, (clinical trial of weekly AC/T), I got used to all the side effects and just accepted them as part of my life. I still did pretty much what I wanted, just slower. It is amazing what your body and mind perceive as "normal" after awhile. I was one of the "late" Herceptin gals, started it 2 months after chemo was over. My one year is almost up and I have a few noticeable side effects...difficulty concentrating/foggy, thumbnails splitting/ridges, can't get wedding ring off because my fingers are swollen. Are these really from Herceptin or lingering effects from chemo?
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05-10-2006, 02:59 PM
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#12
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Senior Member
Join Date: Sep 2005
Posts: 414
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Fingernails
I started herceptin late and find that my fingernails are annoyingly soft.
Tiredness, insomnia and joint pain are known side effects listed on the herceptin information packet, at least for Europe:
http://www.emea.eu.int/humandocs/Hum.../herceptin.htm
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05-11-2006, 09:18 AM
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#13
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Senior Member
Join Date: Sep 2005
Location: South Dakota.
Posts: 621
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Herceptin side efects
runny nose
soft, tearing, breaking fingernails
some hair loss/thinning
difficulty sleeping
weight gain (from herceptin?)
cough (from herceptin? could be the allergies)
Anyone else with a cough? This one worries me a little, but recent chest xray was ok. Can allergies cause a cough and congestion?
Cheryl, I took Ativan for sleeping, too, for about 1 1/2 years. I got hooked, and coming off of it was kind of hard. I had been complaining to my onc about how fatigued I was. He looked at my meds. Decided it was probably the Ativan, which it was. I felt SO much better after getting it out of my system. I will still take it on occasion, but not frequently.
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05-11-2006, 11:18 AM
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#14
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Senior Member
Join Date: Oct 2005
Location: Payson, Arizona
Posts: 96
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Herceptin Side Affects response to Barbara2
Barbara2:
Besides the muscle cramps, mild headache and indigestion post infusion I also get mucus plugs in my broncho tubes and lungs. These mucus plugs are visable on CT scans of the lungs. (The first time they were seen my oncologist was worried but a followup CT scan showed they moved and the radiologist declared they were just mucus plugs.) As a result when I get a cold, I have a hard time getting over the cough stage. I also have mucus plugs in the sinus cavity which was visable on my brain MRI. Maybe you are also having mucus plugs. If you are worried that you may have lung mets and need peace of mind request a Chest CT scan. I am having a followup chest CT again this week but up to now my only chest problems have been those mucus plugs. I hope you are only having this same benign problem.
Barbara
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05-11-2006, 10:25 PM
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#15
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Senior Member
Join Date: Sep 2005
Location: Los Angeles
Posts: 430
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I feel like the seven dwarfs: or maybe more
HI HO HI HO it's off herceptin I go
sneezy
runny
dizzy
itchy
achy
tired
watery eyes
coughy
thin hair
crappy nails
Where's Snow White when you need her
>>>>>>
XO
MCS (maria)
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05-11-2006, 10:26 PM
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#16
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Senior Member
Join Date: Sep 2005
Location: Los Angeles
Posts: 430
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forgot
moody
XO
MCS ( maria)
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05-12-2006, 05:09 AM
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#17
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Member
Join Date: Nov 2005
Location: Baltimore
Posts: 20
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Side effects
Herceptin every 3 weeks....
runny nose
insomnia
weight gain
Olivia
Last Herceptin next week - YIKES!!
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05-12-2006, 07:43 AM
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#18
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Senior Member
Join Date: Sep 2005
Location: Los Angeles
Posts: 430
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I'm sorry if I sounded too light yesterday. I don't mean to put down all these effects of by any means and I will not be off herceptin since it's all i have.
But let me add more:
lack of sleep
bloated
low wbc
skin around nails crack easy
headachy, mostly in morning
and I am not a hypochodriac. these are real
XO
MCS ( maria)
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05-12-2006, 10:09 AM
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#19
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Member
Join Date: Nov 2005
Posts: 8
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Hello All
Just finished 18 months of treatment yesterday -- 6 months of AC/T & 12 months of Herceptin!
I'm hoping the following symptoms were from Herceptin & wil begin to dissipate:
Fairly severe pain in hands (primarily thumbs) & sometimes in back.
Very runny nose
Intermittent very runny eyes
Congestive heart failure -- extreme shortness of breath on any exertion. However, the damage is on the RIGHT side of my heart rather than left. RVEF = 23. Cardiologist thinks that is very strange as my LVEF = 76 (down from high 80's). I suppose time will tell.
Best of luck and many thanks to all. I will stay a frequent visitor here.
Judy
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05-17-2006, 01:21 PM
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#20
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Junior Member
Join Date: May 2006
Posts: 3
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Has anyone had rapid heart beats from Herceptin? Premature ventricular contractions? that keep you awake and short of breath?????
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