Herceptin SIde effects

[John21]

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

[suzan w]

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!!!

[cherylynnie]

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.

[Christine MH-UK]

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.

[juanita]

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.

[John21]

Any headaches also with Herceptin? Thanks for the replies!

John

[mekasan]

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.

[Lisa]

Tired alot, but I think it's the chemo.
Constantly runny nose and eyes.

Love and light,

Lisa

[marymary]

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

[marymary]

My onc says it's not caused by the Herceptin, but I am continually plagued by mouth sores

also thin and breaking nails

Mary

[dberg]

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?

[Christine MH-UK]

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/Humans/EPAR/herceptin/herceptin.htm

[Barbara2]

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.

[Barbara]

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

[MCS]

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)

[MCS]

forgot


moody

XO

MCS ( maria)

[Olivia]

Herceptin every 3 weeks....

runny nose
insomnia
weight gain

Olivia

Last Herceptin next week - YIKES!!

[MCS]

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)

[judy]

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

[Mary D]

Has anyone had rapid heart beats from Herceptin? Premature ventricular contractions? that keep you awake and short of breath?????

[Karen t]

I used to have a resting heart rate in the high 60s. Have been on wkly Herceptin 2 yrs now. My resting heart rate these days is hovering around 100. Sometimes when I feel strange, as in short of breath but not really, my pulse is up around 140. Muga was fine. Anyone have similar experience?

[tousled1]

These are side effects of Herceptin that I found on WEBMD.com



Diarrhea may occur. If this effect persists or worsens, notify your doctor promptly.

Remember that your doctor has prescribed this medication because the benefit to you is greater than the risk of side effects. Many people using this medication do not have serious side effects.

Report promptly: trouble sleeping, increased coughing, swelling of the hands or feet, bone or joint pain, persistent sore throat, unusual fatigue, pain/redness at the injection site, nausea/vomiting, dizziness, headache.

Unlikely but report promptly: tingling hands or feet.

This medication can lower the body's ability to fight an infection. Notify your doctor promptly if you develop any signs of an infections such as fever, chills or persistent sore throat.

In the unlikely event you have an allergic reaction to this drug, seek immediate medical attention. Symptoms of an allergic reaction include rash, itching, swelling, severe dizziness, or trouble breathing. Symptoms may occur while the drug is being given; in these cases the drug infusion must be stopped. If you notice other effects not listed above, contact your doctor or pharmacist.

[aurey]

pain and ache in bones and joints especially hips knees and thumb joint
mood swings
diarrhea in third week
week nails
sleep difficulties because of pain
sometimes a 'dead' feeling in arms - as though slept on it and it had gone numb but it will be the upper arm if lying down
sore nose because continually wet

[gin-tx]

I have had two herceptin treatments, no chemo. I too have difficulty sleeping and staying asleep, slight cough, and some swelling of fingers. I figured all was because of the Herceptin. Good luck and hope your symptoms improve. I had Bc 10 yrs ago with lumpectamy and radiation, no chemo. Then a reoccurrence on other side in April 2006, my onc is doing herceptin and aridia. I tolerated 2nd treatment better than first, had terrible chills. Doc gave me something to counteract that problem. Have next treatment this week. Keep in touch and let me know how you are doing.
ginkott1@aol.com

[panicked911]

If i hear one more time herceptain is benign.....
muscle and joint aches espcially in hands, bottom of feet, knees and elbows .. 2 oncs said take glucosime and controitin .. so far nothing but has oly been two weeks..also started p/t I am curious of those of us who are reporting muslce and joint aches how many are also taking an aromatese inhibitor such as arimidex which is notorious for the muscle/joint aches. Agreed with onc to wait until herceptain is over and se eif any releif ..neither is hopeful and neither was i until i read all of these posts about muslce and joint aches.

THANKS!!!!!

Susanne

[libby]

I am new to this forum in regards to posting a message but have been reading the message board for sometime and have learned a lot from many.
I was reading the topic on Herceptin side effects. I have been on Herceptin since April. Finished Taxol on June 29th. I continue to struggle with pitting edema in the feet and ankles. My onc tells me it is residual from the taxol however, I am really starting to think it is the herceptin after reading the post on side effects. I know it is a small price to pay but I was just wondering what others may be doing about it. Diuretics didn't seem to help and I don't care to be relying on those. It gets so bad some days I have trouble walking.
I will say sleeping hasn't been a real issue. I don't sleep as well as I use to but that has been tolerable.
So, anyone out there with the magic answer to the edema?

[chrisy]

Dear John,
There have been several discussions in the past month or so of sinus headaches as a side effect of Herceptin. Several members have experienced these, ranging from mild to severe. That said, with Her2 disease liking to metastasize to the brain, it's always important to get any persistent headaches checked out with an MRI. Several members have taken this precaution and had "clear" MRI's which is GOOD, but having to live with the headaches is not fun.

[Jean]

Maybe once a every two weeks experience rapid heartbeat - lasts a second or two....
runny noise
sometimes a mild nose bleed
eyes seem dryer
some mild joint pain in the hip area
Usually have a mild headache day of herceptin treatment but alieve seems to help it.


If the herceptin does it job I'll deal with the above.....

Jean

[Margerie]

I have achy hands and especially feet. Insomnia and some water retention- arms and fingers. Peely nails, keeping them short. I had attributed all to Arimidex, now rethinking!