I was on Herceptin for a year ( every 3 weeks ) from June /05 to May0/6
I was 9 months out of standard chemo when I started--I am stage 2B

Noted side effects
!. stiffness and achyness esp. in hands in the morning, hip pain while walking any distance ( still have that ) could be arthritic.It would also take a while for my feet to get going in the morning... sometimes they didn't feel like mine.

2. insomnia-- never was a "good" sleeper but definitely worsened on Herceptin.
( in fact I still have a PRN supply of a sleeping med and take it maybe 2-3 times a week)

3 weight gain-- 10-15 lbs, lost it after I stopped taking Herceptin but it seems to have crept back on

4. the nails-- Still split and don't grow as long as before

5. I've noted some thinning of my hair and that has remained the same

6. fatigue-- wonder if that will ever go away... after my surgeries, chemo, rads and then a year of Her., just don't seem to have the same energy level
and I do all the right things ( could be my age.. I'm 66 ) an oldie in the group

7. mental status-- didn't notice anything remakrable there.... maybe I've always been a little " foggy"---- just kidding---- I'm sharp as a tack


Overall, even though these things are annoying, I would say that after standard chemo, it was a breeze.

Hope this helps.
There seem to be many common threads re: side effects.
And as someone said previously, sometimes my onc. would look at me as though... how could you possibly have these things wrong, they aren't listed
in the medication insert !!!
Now, perhaps, they will start to look at these symtoms a bit more seriuosly with collected data.

Regards,
Carol

Very thirsty
 

I am now on Herceptin only quarterly. I had a triple dose on Thursday. I never noticed this before, but yesterday when I went to my spin class, I drank THREE bottles of water in one hour. I am very thirsty for a couple days after (which isn't a bad thing). I just found that strange, and I didn't notice it as much when I was on a more regular dosage. I have a few of the symptoms that you guys mention, but not nearly as bothersome as some of you have experienced. I have had no weight gain--same weight as always, which didn't change during chemo or radiation either.

I'm Done!
 

Hi All,

I have been waiting for the day when I would finally be done with my Herceptin treatments and it is now here! I was on the every three weeks plan for one year and had my final (I hope) dose on Friday, March 16. My side effects (not necessarily in the order of frequency or annoyance factor) are:

*Chills - all the time, not just during infusion
*Jerking/twitching of my legs
*Lost my eyelashes (twice)
*Slow hair growth (but VERY happy to even have hair to grow slowly!!)
*Brittle nails
*Fatigue!!!
*Weight gain/inability to lose weight
*Cracked skin on fingers
*Vision changes
*Drippy/runny nose
*Back pain (chemo?)
*VERY tired/heavy feeling legs
*Stiffness after sitting

When all is said and done, this was a pretty easy road to travel. The year went by quickly and now I am looking forward to my "new normal".

Wishing you all good health!!

Gerri

Gerri
Your list was perfect and a "must read" for newbies. I had everyone of them except for "losing my eye brows." I am now 8 months since my last treatment and am happy to report most these changes--GONE !!
I am going to add it to the bottom of this list. If anyone would like to add more, I would think copying the list and adding it might be helpful to clarify all that can happen. And eventually the list could be posted by itself.

The only side effect I had that I would add--is insominia. And that too is getting better.
*Chills - all the time, not just during infusion
*Jerking/twitching of my legs
*Lost my eyelashes (twice)
*Slow hair growth (but VERY happy to even have hair to grow slowly!!)
*Brittle nails
*Fatigue!!!
*Weight gain/inability to lose weight
*Cracked skin on fingers
*Vision changes
*Drippy/runny nose
*Back pain (chemo?)
*VERY tired/heavy feeling legs
*Stiffness after sitting
*Insomnia

Long Term User
 

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

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)

I was diagnosed with ibc in Oct. 2006...started chemo in Dec. 2006, getting treatments every 3 weeks. Then started weekly treatments of taxol and herceptin in Feb. 2007. I'm in my 6th week...with 6 more weeks to go. During this time my hair has started to grow back in slowly...lost that after the first dose of chemo in Dec. My symptoms with taxol and herceptin are as follows:

aches in feet and legs, especially after going to bed
fatigue
brittle nails
dry skin
sinus issues
dry nose...with some bleeding
headache
body aches and pains
joint stiffness
back pain...which I attribute to a previous condition of sciatica, but maybe not.
insomina....
memory loss...often can't remember particular words, which could be related to lack of sleep, I suppose.

and ...something new...my heart seems to be pounding a little harder..and I find I'm feeling like I can't get enough oxygen at times. Will let Dr. know on Friday when I see him as this hasn't bothered me much before.

MUGA Scan
 

Allie, by all means you need to get to the doctor....
While on herceptin your doctor should be monitoring your heart with a Muga Scan. Herceptin can lower your heart's ejection fraction for your left ventricle and you could go into a temporary heart failure.
If this happens, it is reversible by giving your body a rest from herceptin.
Good luck!

SandyR

Watery/Teary/Dripping Eyes
 

I never connected my running eyes to my Herceptin use, but now it makes sense as it has stopped since I had to discontinue due to LVEF of 40 last year. I just thought it was a cold, or sinus issues. Not that I had ever had eyes that tear up and run down my face for no reason before. It did not start right away. I was 5 to 6 mos into Herceptin treatment before I had the eye tearing thing. I have also had just about every symptom listed in above threads, but very tolerable.

nose irritations
 

Suggestion for the nose irritations: I had that problem. I thought it was from the chemo impacting the nose vessels causing the nose to bleed slightly, and also a little runny. It is a lot better now, but while I was having the problem which lasted over a month, I bought a nose wash (which looks like a little teapot and you use it to pour in one nostril and out the other). i would put a very diluted antiseptic mouthrinse (such as CrestPro Health, WITHOUT ALCOHOL) into the water. I also bought a nose spray to keep it moist and that helped a whole lot. My primary physican looked inside and saw some inflammation, so she recommended I use an antibiotic cream, applied with a q-tip, only at night.
I don't know which of the above helped the most, but the end result was significant improvement.

Harrie

Herceptin problems
 

Yes, all the symptoms you are experiencing are from Herceptin. This wonder drug sometimes is a pain to deal with but is still a wonder. It's kept me going for the past 9 mo. If my ins co would just pay for all of it, that's another issue.
I have constant runny nose, insomnia, joint pain, pain in feet at night, had acid reflux before but it's gotten worse, think that's enough. But I deal with it and try to keep going. Hope this finds you doing well, you've had a lot to deal with.
This is my 2nd episode of Bc, other was 11 yrs ago. But totally different types of tumors, the latest was much more aggressive.

Keep me informed of your progress.

ginkott1@aol.com

Re nails. I finished TCH (with Taxotere) in mid January (last infusion Dec 27) and I'm STILL having nails lift and separate. A new one started 2 days ago. My onc and I are definitely blaming the Taxotere (does Taxol do this too?), not the Herceptin. It's just such a slow side effect, I hate getting this MONTHs after finishing chemo.

But we don't think it's Herceptin at all. It's definitely a common side of the Taxotere.

Well it is good to know that i am not the only one having these effects of Herceptin. Everytime i mention something to my doc she looks like i said some thing alien to her. When I told her my toe nails came off she told me I may have had a fungus..NOT! they still haven't grown in yet..

Problems with herceptin
 

I think everyone is affected in a different manner. I have runny nose, which I take something but some days it makes little difference, difficulty sleeping, so take something to help me rest at night, when I don't I toss and turn all night long, no problems with toenails or fingernails yet, dryness in nose and nose bleeds (only happened a couple of times). And of course lots of fatigue in daytime, I usually come in from work as I work part time and sleep about an hour. Also I have a tumor on my spine that makes it difficult to lie on my back, so finding a comfortable sleeping position is not easy. Have had radiation, it shrunk some but cannot be removed because of location.

Keep me informed of your progress. I think this site is so wonderful to air our complaints, sometimes our families or the docs do not understand.

hugs,
ginkott1@aol.com

side effects
 

It is interesting to read all the various side effects. My BIGGEST complaint is the excessive salivation during waking hrs when I am not eating. Last night found sucking on sugarless Ricola helps a whole lot. My fingernails are starting to look like small bleeding beneath the nails. Insomnia....not me. I sleep really, really good. The few days i take the decadron, I might have a slight problem, but over the counter Sominex (1/2 tab) is all I need to fix that.
It is one wk past my last TCH tx and I can feel the fatigue. When I do some of my cardio at the gym, I can definitely feel the difference.

Side effects of Herceptin
 

Dear Maryanne,

I have none of the side effects you mention. So far nails have been fine, salivation no problem, have lots of allergies, so take something for that. Biggest problem is I'm noticing I'm very tired for a couple of days after treatment, just slept a lot over week-end and watched TV, did not exert myself at all. Had no energy to do much. If I don't take something to sleep, I may sleep till around 2 am, then I'm up for a couple of hours, then tired the next day. I have other issues but they're totally different from yours. For the most part I think I've done fairly well. Now noticing how tired I get after treatment, don't know if it's Benadryl or the Herceptin. Keep in touch and let me know how you're doing.

hugs,
ginkott1@aol.com

Question??
 

May I ask you about your bc. I was diagnosed in 1994 and am dealing with my 2nd bout with bc.


Will you be receiving Herceptin for life?
What type of treatment did you receive first time around?
Did you have mastectomy?

Any other information will be appreciated.

Thank you Gin-Tex

I was diagnosed June 2006, left breast, her2 post. non hormonal. From July 2006 to Sept. I was on what I called the Red Death (sorry if it sounds bad) then from Oct 2006 to Nov was on Herceptin and Taxol, then Dec until April 2007 just Herceptin. Yes I had Mastectomy with reconstrutive surgery, the tram flap.
Can I ask you when your reacurrence happened. I am concerned about reacurrence because it is in my family. I know with all the Meds out there i shouldn't be worried, but I can't help but think about it.
I hope this was helpful.
Thanks

I finished the chemo on may 2006 with a 55% of FE. I started herceptin on June 2006. After only 2 infusions (every 3 weeks) I had a serious heart problem (FE 15-20%). I stopped herceptin.

Sooo Young!!!
 

Dear Malena: I was devastated when I was diagnosed at age 38, but you? Oh God soo young. Have you heard or Tykerb? Maybe this new drug will work for you. Too bad you couldn't continue with Herceptin. I have been on it for the last almost 4 years in August..so far everything seems ok..I keep praying....I have also been taking Xeloda for the last 3 months due to the tumor growing back (little, nothing to be concerned about for now) and it appears that it's working. I will be seeing the onc. May 2nd. Keep the faith and pray HARD.:)
Stay Positive....Best of all to you...