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

[SherryS]

I started herceptin in April 06. I've had 3 doses and so far so good. I have noticed that I get a headache the day and day after I've had it. I've also been having very dry itchy eyes, a raspy throat, some slight congestion and yesterday noticed an itchy rash on the arm where I have the IV. I've been putting the latter 4 symptoms down to allergy -- this is the time of year when my allergens would begin to bother me. I still have some stiffness and low back ache but I've been putting that down to lingering side effects from taxol. Hard for me to say if this strictly herceptin, not herceptin at all or a combination of allergy/lingering side effects and herceptin.

I'm to have herceptin 1 x 3 weeks for a year. I'm a stage II, er/pr- and her2+.

[StephN]

Hi Lani -
Looks like there is a lot of info developing here.
Diagnosed Sept. of 2000. Lumpectomy, axcillary node dissection.
8 of 18 nodes positive. Hormone neg/neg.
Was already in menopause for about a year prior to dx. No hormone therapy ever.
I started Herceptin weekly (vitamin H - just add it to my supplement list!) in the beginning of January in 2002 along with Taxol and Navelbine for agressive mets.

Herceptin alone plus Zometa since July 2002.
Herceptin tri-weekly since July 2002. No breaks ever necessary.
Had a lot of side effects early on, but they have gotten better little by little, so I attribute most of them to all the various chemos I had in a short period of time.

Still noticing:
* Leg, foot and hand cramps from time to time - take Quinine that helps a lot.
* Some bone, joint and other aches and stiffness. Attribut some of this to the ANA positive situation that has developed with me. Not enough to interfere much with things I need to do.
* Intermittent runny nose and eyes. Not severe and take Allegra as needed for seasonal allergies.
* Skin peels on forefingers. Nails in good shape. Hair grows normally.

No stomach upset or gas problems beyond normal. No headaches.
Cognitive functions mostly ok.
Blood counts and liver functions stay well into the normal ranges and tumor markers are steady like a rock. ;-)

NOTE: I do get my infusion over 45 minutes - this seems to alleviate the slight flushing and redness that can occur if a shorter infusion. The infusion suite nurses say that other patients like a longer infusion as well.
I also hydrate myself very well and drink water and eat during my infusion.

Really feel fortunate this this drug is so benign as far as side effects for me. I still have some problems due to all the taxanes and the rest.

I work hard to eat well and get some proper exercise but get hit hard again when my brain acts up. After the Gamma Knife in Jan of 2005, I was a mess again. Fought my way back to good health and then had a brain surgery in Feb of this year. Getting back to normal from that now with the exception of a fluid pocket that has formed at the surgery site and needs attention.

P. S. There is NO follow up on those of us who got Herceptin as Stage IV. I asked about that in San Antonio to Genentech reps and they seem to think it is up to some recognized researchers to get a study together that approved by the FDA. The docs do not report to Genentech as far as I know.

[sadie]

Dx Oct 05 Early IDC / Stage 1 / Lumpectomy / Her2+++ / 1cm / grade 3 / neg nodes / ER+ PR weakly+ / post menopausal
AC every 3 wks x4: Had changes in vision; beginning echo 71%; end echo 58%; white counts down once (had neulasta shot). Only slight nausea. Fine otherwise.

Herceptin/Taxol every wk x12 :
Half-way thru, echo = 65%; blood counts all ok except low iron mid-way thru. Received something in chemo 3x to bring back up; hair growing back thick & full;
Rosy cheeks for 2 days after trtmts (blame Herceptin);
Numbness & swelling in both feet,ankles. 20 mg lasix/didn't help; Don't know what to blame; tested for leg blood clot=neg;
Bloated (blame steroids);
Developed acid reflux (Taxol or Herceptin to blame?) Taking prevacid resolved problem;
Vision getting worse (goes back & forth); Started during AC, but now that I'm off of it I don't know what to blame.
Became short of breath upon excertion & very dry crusty nose; Nails splitting,peeling easily & sometimes got mild pain in pelvic area (ovaries?) Blamed Taxol for all of that.

Herceptin every 3 wks (just had 3rd dose)
shortness of breath & nail splitting & crusty nose & sluggish feeling & pain in ovaries area disappeared; now have:
Had runny nose (I blamed Herceptin); No more runny nose after 3rd tx.
Swelling in left foot & ankle much much worse; slight swelling in right foot & ankle (40 mg lasix not helping; I think herceptin responsible; dr says she doesn't think so). Sending me for Muga (it's time) and to see a cardiologist just in case.
Cardiologist did ekg; came out fine; Said ankle swelling is due to water-retenion.
Vision still bad, especially 1 week after Herceptin tx (near & far-sight); I blamed earlier AC treatments. Don't really know now, since it is continuing. Since it's worse for week or so after Herceptin, I blame Herceptin for current vision problems.
Sometimes slight wave of pain in sides of neck for few seconds; I blame Herceptin; Onc said not from Herceptin;
Now after 3rd tx, I am getting more cramps in neck; Actually had severe muscle spasm in neck (under left chin area after trying to stop a yawn).
Still taking prevacid for acid reflux developed during Tax/Herc; Now actually getting gurd. Due to Herceptin?
Was emotional:cried easily (happy & sad) for about 1 week after 1st 2 tx. Was also crabby during same time. I blamed Herceptin. Dr says no.
Cracking in jaw (tmj) worse. I blame Herceptin.
Hot flashes much stronger than prior to any Herceptin (could be because hot weather is here now), but I think Herceptin contributing to it;
Trouble sleeping (sometimes due to hotflashes, sometime not) I blame Herceptin;
This past week have felt a few flutters in heart area. Onc says probably esophageal spasms leftover from taxol tx. Cardiologist said heart ok on ekg. Swelling in feet results in numbing toes (left over from Taxol?). Don't know.
Becoming scatter-brained; Have to search for words at times. (I blame Herceptin)
Other than that....doing great!

[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.

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.

[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

[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????