Odd Side Effects of Herceptin

[nancymarie]

I know that alot of the gals here have mentioned the sinus problems that they have (including me) from Herceptin but I have also had the following:

- mouth sores
- acid reflux

and I'm not on any other treatments so this has to be herceptin related since both of these have started recently.

Any other "not so common" side effects experienced by anyone else?

Thanks in advance!

-Nancy

[tricia keegan]

Hi Nancy,I too had the sinus problems and put a post up last week regarding the acid reflux and stomach problems.I have also had a dry sore mouth but no actual sores.I am 10 weeks over chemo so not sure whether the herceptin or chemo was responsible.I saw the Dr again Mon and she thinks now I have either an ulcer or osophigitis and wants me to have an endoscopy to be sure.I never had any problems in the past with acid reflux or my stomach.She has given me Nexium tablets until I get in to have the test done but I have come accross a few people with these complaints so you are definatly not on your own.I also get muscle and bone aches and cramps after the herceptin which can last for a week or so.
Tricia

oh my gosh I thought I was insane or that it was in my liver. I have these weird little "spasms or cramps" well tightness which is really not painful just annoying in my right side. My stomach always feels tight and uncomfortable. Sort of like morning sickness when you can never let your stomach get empty. Could this be from herceptin? I get it ever 3 weeks.

[Sherryg683]

Well, I am tired of crying. My eyes water so bad and itch and are red. It doesn't do me any good to put on eye makeup, I just "cry" it off. Some days are worse than others but it's pretty consistant. I hope I adjust to this because I have to be on Herceptin indefinately and this is a real pain. I'm thinking of getting perminent eyeliner and mascara done, although everyone is scaring me saying I could get an infection..that's just what I would need...sherryg683

[Sheila]

Sherry

The crying does not seem to improve..I've been at it for 2 1/2 years...between the nose running and the eyes watering, I always have kleenex on me!

[nancymarie]

Wow,

I didn't know that Herceptin caused teary eyes. I had that problem a couple years ago when I was on Taxotere.

I thought of yet another symptom (although minor) but irritating!

Pimples! I remember after my very first infusion my skin looked like crap around Christmas and I continue to break out quite a bit the first week after my infusion.

Proactiv Solution - thank you!!!

-Nancy

[sarah]

here in France they give you bicarbonate de sodium (generally for chemo though) to avoid "mushrooms" in the mouth.
try Maalox liquid before meals and before bed and raise the head of the bed - see if that works for heartburn. don't let the heartburn get out of hand it can cause problems.
good luck
sarah

[mekasan]

I have been on Herceptin since 12/21. I noticed by the second or third treatment that my thumb joints were very sore all the time, especially in the morning. My nurse said that joint pain was a rare side effect.

I also notice that after each infusion (every three weeks) I notice a weird taste in my mouth.

[Shawn]

Hi,

I have had a sore index finger joint for several months (on my mastectomy side) and a runny nose. I started Herceptin on 12/27.

Shawn

[Chelee]

I would like to say for sure it was the herceptin...but in my case...I am also on taxotere and carbpotin along with weekly herceptin. That being said...I do know almost for sure...the sinus problems ARE from the herceptin.
I too get a sore mouth...mainly my tongue for some reason? And the acid reflux WAS bad. Nearly destroyed me the first round of herceptin. But again...I did have the other two drugs too.
But as far as the acid reflux and stomach problems...I had the WORSE time of it the first go around. But I had this NEW young oncologist...and he gave me NOTHING other then anti nausea meds at that time. I have this NEW women oncologist and told her how bad my acid reflux was the first time...how I couldn't eat of drink anything without it coming back up in my throat and burning like all get out. She said thats ridicous that my first oncologist did NOT give me anything for that. She said I shouldn't of had to ask either...that he should of known better.

So since her...I have no more acid reflux, or indigestion. She gave me some meds, "Protonix" and "Pepcid". They really do the trick. So look into that if you are having the acid reflux. I feel so much better thanks to her.

The ONLY other side affect I can tell you I can pretty much guarantee you is from the herceptin...is some dizziness. Its happened a few times after my weekly herceptin treatments. I kind of feel off balance and want to fall towards the left. It stays around a few days...but it does pass. It comes and goes...its strange.

Chelee

[judy]

I am just finishing a year of Herceptin. My last infusion is next week.

Side effects:

Runny nose
Runny eyes
Fairly severe arthritic pain in hands (thumb joints) and from time-to-time in shoulders and back
"Icky" stomach frequently -- something like morning sickness
Congestive Heart Failure -- although very strange because it is on the right side. May be a pre-existing condition exacerbated by Adriamycin &/or Herceptin
Fatigue - probaby from the CHF rather than herceptin

All-in-all -- much better than a recurrence. I'm happy to put up with these things & feel lucky to have herceptin in the picture.

I'm hopeful these issues will resolve once I'm off herceptin for awhile. We'll see.

Take care everyone

[hutchibk]

I have been on 'Herceptin only' for 3 months now...

1. Acid reflux cleared up after I discontinued Carbo and Taxol at the end of January. It didn't go away immediately, but within a month or so. I took Nexium during chemo and for the month or so after - apparently it not only relieves the reflux, but it also heals the stomach and esophagus from the ravages of reflux. Seemed to have worked for me. I have a very small susceptibility to it still if I eat anything too late in the evening that is too rich or too spicy. And red wine too close to bedtime can also stir it up a bit. I just avoid all of those things and don't eat too late - and I have had no problems at all.

2. Sinus issues and watery eyes cleared up, too, after discontinuing chemo. I did get them a little during my first 'Herceptin only' treatment, but it was apparently an allergic reaction to the Herceptin... and 25mg of Benadryl before every infusion takes care of it now.

3. My only lasting side effect is upon waking I get the 'arthritic fingers' in both hands and still have the numb, stiff toes on both feet. Usually takes a few minutes of finger stretchs and walking around to get them going and then all is well for the rest of the day. I didn't know for sure that this was from Herceptin, but now that I am reading that others suffer from it - I am pretty sure that's the explanation.

I agree Judy - I would take these little annoyances anyday over the alternative. Thank goodness for Herceptin!