Please post your two cents on Herceptin "side effects" real or perceived!

[Barbara H.]

Herceptin has been easy for me. I had fever and chills from the first loading dose. My nose runs a bit more and is crusty and my nails are not great. Sometimes I am a little tired the next day. However, I have to say that if I didn't know that I was on Herceptin, I probably wouldn't even notice these slight symptoms. That is not the case with Navelbine and Zometa which I currently take for minor bone mets which have popped up. I really get achy from Zometa and fatigue and aches from Navelbine. Last week my chemo nurse advised me to take 3 advil the first night I received Zometa and three the next morning. I teach third grade, and went to school the next day and did fine. Advil seems to do the trick to make it through the first few days. Two years ago I didn't have bone mets, but had it everywhere else, liver, lungs, nodes throughout, and skin mets. Herceptin alone got rid of all of that until March of this year when my tumor markers were starting to rise and bone mets were confirmed. I just hope that I am now not resistant to Herceptn. My CEA is currently 1.3 and CA27-29 is currently 20 so the combo I am currently on seems to be working. I just want to be able to get off the Navelbine at some point because it really has done a job on my blood counts. I think Herceptin is like other drugs and food. There are common reactions, but drugs and food can affect different people differently.
Best wishes,
Barbara Holz

[Maggie]

7/2004 Lumpectomy
Infiltrating Medullary Carcinoma
Stage 1 no grade, 1.2 cn.
HER2 3+ ER/PR negative
4 A/C 33 rads.. finished 12/23/04
Herceptin started November 2005, every 3 weeks, 90 minute infusion for 1 year..

When I first started Herceptin, my nose ran constantly, bled a bit and was very crusty.
Now, it still runs but not quite as much. I have always and still do get little balls of mucus that form in the nose and stick inside. I am constantly trying to pick them out since they do show and it hurts and bleeds, some. I did read here a while ago about the Ayr Saline Nasal Gel and have been using that. This week, my one nostril was so swollen and red at the tip for 4 days. I looked like a drunken sailor, as the saying goes! I did try hot compresses inside and out of the nose to soften them.
I will talk to my Onco about some of the meds mentioned on this board by someone earlier.
I also have shredding nails and pain in my knees, "sometimes" when using the steps.

Let me say, for me, these are all tolerable and worth it as long as I can receive Herceptin.. Bring on Wednesday!

Maggie BTW....... Thanks for starting this thread again!

[Deb]

DX
Stage: IIIA
IDC
9/9 Nodes Positive
ER/PR -
HER2+++

TX
Lumpectomy - Aug 05
AC/T - Sept 05
Herceptin started w/Taxol
36 Rads - Mar 06
Herceptin weekly until mid Dec 06

Side Effects
Foggy, foggy memory - lost words all the time (look like fool at work)
Headaches - don't really hurt, more like a pressure, like I have a cap on
Woozyness - only occassionaly (so it makes me think I'm making it up)
Bursitis in shoulder - for a several weeks, now gone
Tennis Elbow - started after bursitis finished, this comes and goes
Depression - I have reason to be depressed, I'm in tx for bc
Weight Gain - Overeating could be reason, but am I craving because of "H"?
Split Nails

[astrid]

I had my first infusion of herceptin yesterday. Currently I am on NO other medication. I was tired yesterday due to the anxiety etc. Last night I had fever and chills. Fever reached 100.5 and I called the doctor. They were not concerned unless it went above 101. The fever is gone today and I feel dizzy but that is passing also.

[astrid]

Started Hercpetin June 14th and I am on NO other drugs but Herceptin. (will start tamoxifen today). I had bad headaches on day four and again on day seven. The head aches are so bad, my vision is blurred and I feel very dizzy. Feel fine today.

[simimom]

I finished my one year of Herceptin in Feb. 06 and finished chemo in July 2005. I attribute most of my side effects to chemo, but I still have neck, shoulder, back, and hip pain. I also have "chemo brain," numbness in my feet, hand and feet cramps (sometimes very severe), stuffy nose, can't sleep (or stay asleep), constipation, headaches, weight gain (around middle), and can't seem to get my energy back -- extremely exhausted by end of the work week and end of sleeping at least one entire day on the weekend. I do consider Herceptin a miracle and feel that it's saved my life -- dx with IBC in January 2005 and now according to path report cancer free!

I have a memory of doing this, but don't see my response, so perhaps not. No doubt, one of herceptin's side effects. In order of severity:

Runny, crusty nose (constant);

Dry cough (gets better at times but continuous);

Difficulty breathing at times, particularly first few days after an infusion;

Vision problems (difficult to focus in mornings; takes about 15 minutes of rubbing eyes before I can read newspaper; then blurry vision for rest of day);

Weight gain (15 pounds since diagnosis; I've been on a strict diet for the last month or so and have not lost a single pound);

Swelling in feet and ankles (some days worse than others);

Nails breaking, with ridges (getting worse with each infusion); as a side note, my nails have always grown very quickly, to my annoyance; not any more;

Hair growing slowly (thick, but very very short). Stopped chemo at end of October; it is currently about one inch to one and a half inchs in length;

Memory, word use, ability to spell are all impacted. I'm a professional writer, previously with an excellent memory. When I now review emails, I find words that have no relationship to what I thought I had written; often can't even use a dictionary to correctly spell a word, as I can't even do an approximation;

Last MUGA scan (currently six months on herceptin) indicated that I now have hypokinesis of right ventricle.

[betlen5]

I can relate with Grace on the following:

I have a memory of doing this, but don't see my response, so perhaps not. No doubt, one of herceptin's side effects. In order of severity:
Runny, crusty nose (constant);
Dry cough (gets better at times but continuous);
Difficulty breathing at times, particularly first few days after an infusion;
Vision problems (difficult to focus in mornings; takes about 15 minutes of rubbing eyes before I can read newspaper; then blurry vision for rest of day); Memory, word use, ability to spell are all impacted.

I also had and still have even after being off Herceptin for 5 months; lower back problems, hearing loss, sharp pains in my ear drums and eye areas. I stay tired a lot.

Betty

[Brian]

My wife, Lisa, was initially diagnosed with IDC in December, 1991-NED for 10.5 years-Recurrance in liver and lung in May, 2002. She has had every treatment known to man since May, 2002-Has been on Herceptin since July, 2003 to which she has had a complete response. Was NED from July, 2003 to January, 2005 when cancer again appeared in old scar tissue in lung. NED again after surgery-Stayed on Herceptin throughout-Gemzar added for a few months-April, 2005-Lisa had a stroke while in Italy and a small brain tumor found-tumor was gamma knifed and gemzar continued-October, 2005 cancer discovered in liver where previous tumors were ablated. Areas again ablated and Xeloda was added to herceptin. Xeloda treatment ended April, 2006-Lisa has been NED since liver surgery in October, 2005 and has been on weekly Herceptin ever since.

SIDE EFFECTS-
1. Dry-Bloody nose.
2. Runny nose-Constant
3. Periodic muscle cramps throughout body
4. Joint pain in knees, elbows.
5. Muscle pain in arms
6. Muscle spasms in back.
7. Thin weak toe nails and fingernails.
8. Slow growing hair.
9. Fatigue.
10. Acid reflux and peptic ulcers.

Herceptin has been a miracle drug for Lisa, but although it is keeping the cancer at bay, the side effects have become burdensome enough to impose on her daily life. We have been able to control her nausea and muscle pain lately. We are working with the Docs to check blood levels of various chemicals to see if we can get some permanent relief from these problems.

Good Luck and God Bless to All!
Lisa and Brian

[hutchibk]

I have been on Herceptin since September 2005, sometimes with chemo, and sometimes by itself. I am currently on Herceptin until the cows come home, in combination with Taxol, every 3 weeks. Here are my top 10, but I think some of them may be exacerbated by the Taxol, as they weren't as acute when I was on Herceptin by itself...

1. Dry/scabby-sometimes bloody nose.
(Solution for me: antibiotic ointment on Q-tip inside nostrils AM&PM-
it's wonderful, healing and soothing)
2. Runny nose-Constant
3. Periodic muscle cramps throughout body
(Solution for me: I try and stay ULTRA-hydrated which really seems to help... and when I get a particulary mean leg cramp, I eat a banana which usually works pretty quick)
4. Joint pain in knees, elbows (Solution for me: motrin)
5. Stiffness after sitting and sleeping, especially in fingers and ankles.
6. Tired/heavy feeling legs and jerking/twitching of legs
7. Thin weak toe nails and fingernails.
8. Fatigue.
9. Acid reflux. (Solution for me: Nexium when needed)
10. Watery/drippy/teary eyes (Solution for me: Patanol eye drops)

[dskdrive]

DX as Stage 2, IDC 9/04
ER and PR +
Her2+++
Chemo put me in menopause at age 51
Lumpectomy (tumor 2.5 cm) Sen Node(Neg)
A/C(4)
Rads(33)
Arimidex
Begain Herceptin Aug 05 for one year. Every 3 week dose.
Had infusion reaction on loading dose. Chills. Now premedicated with Tylenol and Benadryl.

Side effects: Crusty nose to begin with, now it just runs. Very dry eyes. Nails are thin and do not grow much. Eye brows are thin on the outer edge. No hair growth much on legs or under arms. Head is OK except is grows much slower. Cannot sleep and have night sweats, again may be the arimidex. Weird dreams. Pain in neck. Just developed basil cell cancer on side of nose. Will have microsurgery for that. Joint stiffness especially in hands and feet. Swelling of hands in mornings. Urine is more yellow. May be damage from chemo. Cannot get enough air when lying down(sometimes) Capillaries in shins burst. Looks like a rash. Does this make sense - I cannot walk as fast as I used to. It could be from weight gain of 20lbs. I feel I have to think about walking but I cannot think fast enough to walk fast????