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

[Andi]

I'm currently taking herceptin once every three weeks with a 30 minute infusion, to be completed in September. I started it last September taking it weekly for 12 weeks with Taxol. I continued with the every 3 weeks while taking my radiation. Currently the only other mediciation I am taking is Tamoxifin. I have some "crusties" in my nose and my nose will run when I am exercising. My fingernails are very thin and I do have a tightening of my ankles when I sit or lay for awhile. If I just remember to do some stretches before I get up, then I am fine. My MUGAs have stayed pretty constant as has my weight.

[panicked911]

I was diagnosised 9/14/05 ( my daughter's 10th b'day). lumpectomy right side 10/5/05 - immediately put on tamoxifen - started herceptain week before thanksgiving - began lupron shots 12/1/05 - switched to arimidex the following week. Aches and pains started within a week. mostky joint aches and i the feet and arches. Wet thru reexcision ( came up clean) 1/16/06 - contnued with weekly herceptain - started radiaton 2/12 - ended last monday in march. Cotinued weekly Herceptain thru April 18. Now doing herceptain once every three weeks.
Interestigly i developed a sinus infection early March - was given leviquen - had a horrible reaction muscle aches beyond belief and severe pain - switched to ceftan pain abated 50% still have it mostly in knees ad elbow joints. - was convinced it was the leviquen - now wondering if it a combo of the antibiotic and herceptain and arimidex.
Liver function test slightly elevated since end of march when I started Rhino aquacort for the sinus infections ( which i could blame the herceptain but I had this prior to BC diagnosis) .

I seem to be tolerating it much better at 3 week intervals tha weekly- have been ADD since November - can oly go back to work part time - and have less energy than before - but even that has come back slightly on my off two weeks of herceptain or it can be b/c doen with radiation and that takes awhile (3-8) weeks to leave system.
I am on a one year stint of Herceptain - stage 1 -no node involvement

[Mgarr]

Oh I forgot that awful taste in my mouth I get during infusion and for approx. and hour afterward.

[Berta]

I am Stage I. I took four rounds of epirudicin and cytoxan ending in March 05. I was called back in for Herceptin in July. Since that time, I've had runny nose, night sweats, flaky nails and have gone through two perscriptions as my nearsightedness has gotten progressively worse. I've also gained about 30 lbs. I don't know how much if any of this is related to the herceptin but the docs do believe the vision problems are not explainable any other way. Having said all of that, I would gladly take herceptin for the rest of my life if I could find someone who would prescribe it. I take it every three weeks. Berta

[Bev]

Hi, Stage 2, ER/PR+, 4Ac, then taxol And Herceptin 12 weekly beginning 11/05, solo Herceptin since 2/05. Rads in March. Tamoxifen begining mid April.

Really felt the foggy and fatigue cloud lift shortly after taxol. Reading vision, focus, has rapidly gone downhill, but i am at that age. Ditto memory. Really runny nose that crusts overnight. My ears stuffed up so I couldn't hear for a couple of months but started taking claritin etc. so I can hear again. BMs are loose, thought it might be the rads, but things haven't gone back to normal yet after 4 wks off rads.

Overall though, feeling great. No headaches, no pain, no infusion reactions. Muga is fine,

Thanks Lani

[jhandley]

Recurrence in sept05...one spot to liver. 6 tx taxol and herceptin (3 weekly) have had 4 years of herceptin (3 weekly).
Sinusitis, nausea which has continued intermittently for 2 weeks. Mood swings and hot flashes occasionally..usually in first week after herceptin.

Jackie

[APRILSHER2]

taxol causes hot flashes so herceptin may not be the culprit

[Julie2]

I have very little sinus headache, minor joint pain, also decrease in eye sight.
stage 3.

julie

[Yorkiegirl]

I have been on Herceptin alone since August 05.

I have also called Genetech about the problems I have had, they took a report and also had some one call me as well so it could be logged.

Theses are my issues I have:

Lower back pain, Rib pain, Joint Pain in hands and knees
Weight Gain, Bloating, Tired, Can't sleep, hedaches, runny nose that get's crusty at night.

Every time I mention any of this to the Onc Nurse or My Onc, I seem to get this look, Oh here she goes complaining again. I am to the point now I afraid to mention anything at all, as they seem to think (especially the My Onc nurse) that I am making up this stuff. Quite frankly I am starting to get depressed for the very first time since starting on this journey. OK now I'm crying.


Vicki

Biopsy Dx'd 3-23-05 w/ 3 cm tumor Age 48 1/2 (turned 49 July)

MRM 4-5-05 w/ 2 tumor's 5cm, and 6 cm (right side)
5+/16 nodes
Stage 3
ER/PR-, Her2/neu ++ confirmed by FISH
ki67 78%

Begin Chemo 5-2-05 4XAC Dose Dense , 4X Abraxane Dose Dense (ended August 05)

28 Rad's ended October 13 2005

Started Herceptin Weekly August 2005 for one year, will be done this August 2006.

Had a Simple mastectomy left side after Mamo showed incresed micro-calcifications. Jan. 17 2006.

[Patricia]

My nails are separating from my fingers and toes. I thought it must have been from the Taxol, as I was told that could happen, but I have been off the Taxol since end of Feb and it is getting worse. My onc confirmed last week that he has seen this with others on Herceptin.

Itchy skin even though it is not dry.

Runny nose which goes crusty at night - Every night!

Foggy head (hard to know if it is chemo brain or from the Herceptin) - can't find words

Slow growing hair

Dropping MUGA :-( Dropped from 62 to 52 in the 5 months I have been on so far. I am hoping it stabilizes so that I can stay on, we will be doing a new MUGA in 2 mos.
Painful legs, but could be Aromasin. I had a huge issue with this on Taxol and it is better but has levelled off where its at. Onc said could be Herceptin but also could be Aromasin

[atdec05]

It's been interesting to read that others have experienced vision problems. I also have a runny nose, intermittent headaches, weight gain, and trouble sleeping (though I think that's due to chemopause). At 3 month echo, EF dropped from 65 to 60.

I guess I should add chemo brain to the side effects, though that seems to have started with the AC :-) My blood pressure also started climbing after about 6 weekly Herceptins. My onc. thought it was too far out from the AC to be from that, but didn't think the Herceptin could cause it. I also had a facial rash after the first few treatments, but it went away.

Stage 1, er/pr-
pre-menopausal (now in menopause)
4 DD AC (finished 1/25/06)
Feb started weekly herceptin

[janet11]

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.

Me too me too. Gosh I feel so relieved that other people experience these symptoms. Joint aches, lower energy levels, and my scalp hurts sometimes. Oh and flaky nails. Hey ho better than being dead eh. But my chemo nurses continue to state that there are no side fx from Herceptin.

[KLW]

I get Herceptin every 3 wks, 8 to go. The only side effects I'm having are runny nose, brittle nails, feel a little tired and lower half achey, but that may be due to the Tamoxifen, which I started 3/20/10.

Diagnosed 6/17/10 at the age of 40
Stage 2A
Ductal and lobular
Two 2cm tumours
Double Mast. 7/22/10
ER PR + HER 2 +
treatment AC T 8/10-1/11
Herceptin every 3 wks through Oct '11

[snolan]

I get Herceptin every 3 weeks. I too have a runny nose, nice to know it's not just me. Had chemo TCH protocol so have been on Herceptin since Aug of 2010, started Tamxifin in March after radiation. Have not had any fatigue or other side effects, my finger nails fell off from chemo but have grown back and I take calcium and that seems to help keep them from breaking so much. I exercise alot to include racing mountain bikes so I haven't felt any fatigue. Do get chemical smell in urine for a couple of days after treatment.

Diagnosis 6/8/10 DCIS, 7/26/10 HER2+ stage I at age 41
(B) mastectomy w reconstruction but (L) got infected and had to take out expander, will do recon later in year. TCH protocol for chemo went well with no complications.

[Raquel]

Wow! T hought it was just me but I've had many of the same side effects:eyelahes fell out,periods every couple weeks,fatigue,runny nose,vaginal dryness, weight gain! Of course my Dr said they are not side effects of the herceptin! Glad to know it's not just me!I've been on the stuff 4 years now!

[sandy truett]

I was on herceptin weekly for one year. I had some upper teeth pain (sinus?) about the 11th month but it disappeared 2 months after finishing the herceptin. No weight gain or any other pains.

There's an extensive post somewhere on this board that discusses vaginal dryness with lots of good advice. You might try a search. It may have been started by Brenda or Becky, and it's worthwhile reviewing.