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Old 05-08-2006, 06:51 AM   #1
John21
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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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Old 05-08-2006, 11:04 AM   #2
suzan w
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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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Old 05-08-2006, 12:11 PM   #3
cherylynnie
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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.
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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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Old 05-08-2006, 12:51 PM   #4
Christine MH-UK
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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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Old 05-09-2006, 04:51 PM   #5
juanita
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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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Old 05-09-2006, 07:07 PM   #6
John21
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Thanks

Any headaches also with Herceptin? Thanks for the replies!

John
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Old 05-09-2006, 07:20 PM   #7
mekasan
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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.
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1 year (every 3 weeks) Herceptin
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Old 05-09-2006, 08:15 PM   #8
Lisa
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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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Old 05-09-2006, 08:34 PM   #9
marymary
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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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Old 05-09-2006, 08:43 PM   #10
marymary
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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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Old 05-10-2006, 07:19 AM   #11
dberg
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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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Old 05-10-2006, 02:59 PM   #12
Christine MH-UK
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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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Old 05-11-2006, 09:18 AM   #13
Barbara2
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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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Old 05-11-2006, 11:18 AM   #14
Barbara
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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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Old 05-11-2006, 10:25 PM   #15
MCS
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Wink

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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Old 05-11-2006, 10:26 PM   #16
MCS
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Red face

forgot


moody

XO

MCS ( maria)
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Old 05-12-2006, 05:09 AM   #17
Olivia
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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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Old 05-12-2006, 07:43 AM   #18
MCS
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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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Old 05-12-2006, 10:09 AM   #19
judy
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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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Old 05-17-2006, 01:21 PM   #20
Mary D
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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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