Please post your two cents on Herceptin "side effects" real or perceived! - Page 30

pmm10414 · 12-20-2011, 04:15 AM

I agree. It gives you a sense of security. I could not imagine going through taxol again.

Kroesen · 12-20-2011, 10:07 AM

I have posted pictures on a blog that I started today. I want to help others who have similar symptoms. I may be ending herceptin on Friday. After a swollen tongue, I'm not sure if I have much of a choice. Check out my blog if you would like to see what a herceptin rash looks like. http://kroesen-cancer.blogspot.com/

pmm10414 · 12-20-2011, 01:00 PM

While I was being treated my tongue swelled up, but my Onc and I decided it was from another drug I was taking. We stopped it and the swelling stopped. Let's hope all goes well for you. Sending hugs your way.

Kroesen · 12-20-2011, 01:50 PM

Thanks PMM. I am feeling at peace that my doctor will help me make the right decision.

iamlisaann · 12-20-2011, 02:45 PM

I was on Herceptin weekly for 1 year. 9 months Herceptin alone. No symptoms or side effects at all. Hope this helps.

Rody · 12-20-2011, 03:52 PM

Have been on Herceptin every week since 10/07 for 1 year following TC chemo. No side effects noted. Restarted Herceptin after mets in lungs 6/09 and continue on every 3 weeks with different chemo regimins. Major side effects are constant liquid dripping nose, bleeding nose, dry eyes but dripping overflowing tears when up and active. Other side effects come and go and seem to be related to chemo drugs.
Thanks, Kay

rhondalea · 12-21-2011, 07:15 AM

I found this the other day when I was trying to distinguish between leftover side effects from Taxol and current side effects from Herceptin. At the moment, it's not a useful link for me, but I could not find any previous mention (could just be my continuing brain boggle), and it seems that at least one poster here developed sarcoidosis (although there was nothing in her post to indicate it was caused by Herceptin). Still, forewarned is forearmed, and I hope it might help someone someday.

http://chestjournal.chestpubs.org/cg...gAbstracts/56A

Trastuzumab Induced Sarcoidosis Mimicking Metastatic Carcinoma

INTRODUCTION: Trastuzumab, a humanized monoclonal antibody against the extracellular domain of the human epidermal growth factor receptor 2 (HER2), is indicated for the treatment of HER2-positive early or metastatic breast cancer. Common pulmonary complications include dyspnea and cough. We report a case of probable trastuzumab related adverse reaction in a breast cancer patient with clinical manifestations resembling sarcoidosis and characterized by noncaseating granulomas in skin, bone and hilar lymph nodes.

[...]

Kroesen · 12-23-2011, 02:42 PM

Thanks everyone for your well wishes. Here is an update of my day. I'm off herceptin until further notice. My rash is continuing to itch and burn. I was sent to allergist again today. He put me on stronger steroids, hydrocort, and two other meds. I meet with him again next Friday to see if those meds have helped at all.

I also met with radiologist and see him again next Tuesday.

I'm okay with the decision to stop right now. I don't think I could take any more breakouts. The rash continues to climb up my neck.

Praying another week will help clear it up some if not all.

Have a Merry Christmas everyone.

pmm10414 · 12-23-2011, 03:00 PM

Let think good thoughts. Have you tried oatmeal bath for itching?

Kroesen · 12-23-2011, 03:06 PM

Yes I have. Doesn't even come close to touching it. I even took an ice cold bath that about made my heart stop (not literally). I'm sitting around now in a short sleeve shirt and have goosebumps all over. Allergist said to keep it cool. Well, I'm the coolest person I know right now (LOL).

pmm10414 · 12-23-2011, 03:19 PM

Poor thing. I was put on atarax when I had reaction to hormonal changes when I had my son. It worked. I was so itchy I was miserable too. They had a cream too.

Kroesen · 12-24-2011, 07:15 AM

The allergist put me on Atarax (Hydroxyzine) yesterday. Hopefully that will get me some relief. I've also been placed on prednisone and hydro. lotion. I'm feeling shaky and hoping that I won't turn mean while on this med. I remember my dad on it. It didn't bring out the pleasant side of him.

Everyone have a Merry Christmas and a Happy New Year. I plan on looking forward to the possibilities of next year versus the probabilities.

Thanks all.

Ms.Judi · 12-24-2011, 11:14 AM

I'm a Stage 3, ER/PR (-), Her2 (3+), post left mastectomy and currently on 3rd cycle of 6 TCH treatment. Herceptin is given every week until TC is finished then am scheduled to go to 3 week Herceptin infusions until Nov 2012. I won't really be able to assess the other effects until I'm on Herceptin only, but I am experiencing leg, foot and hand cramping as well as eye, nose and throat issues.

I'm so glad to know I'm not the only one with the nasal/eye issues. My onc nurse keeps suggesting an antibiotic, but I keep insisting the symptoms are more allergy-like. It's hard for me to separate my symptoms since I'm on 3 drug regimen but after reading these postings, I'm more convinced that the Herceptin is responsible for the ENT issues and it's not a "recurrent "head cold". My healthcare nurse advisor suggested I see my eye specialist (I have an appointment mid January so i'll let you know the outcome then) because she had another Herceptin patient with the runny and/or dry, scratchy eye symptoms who was successfully treated in office with laser surgery to her tear ducts. The eye doc said they were blocked, he could only attribute it to her current treatment since she had no history of a tear duct problem before Herceptin.

I also found a homeopathic nasal spray called "Allergy Buster" (OTC at drugstore) that really, really takes care of the nasal congestion and headache. The downside is it gives a really, really brief but intense nose burn. My husband tried it and said he got a mild burning sensation, but mine is definitely more than mild. We suspect it's because I had nasal irritation when I started using. But the relief it gives me, especially at night, is worth the few seconds of discomfort. P.S. We looked up the ingredients on the net and the main one is Capsacin. Duh! Ya think that might explain the nose burn?
Of course, check with your doc before using, but I went for that rather than Afrin or other OTC nasal sprays because it doesn't have a rebound effect like the other sprays when used over time.

pmm10414 · 12-24-2011, 12:35 PM

They put me on nasonex and I seem to do better. At my last PET scan they said there were permanent narrowing to my right nasal passage. I have been using saline and it seems to relieve discomfort some.

NanaJoni · 12-24-2011, 12:42 PM

my onc nurses told me to use generic Claritin and it helped a lot.

pmm10414 · 12-24-2011, 12:58 PM

Me too I still use it.

rhondalea · 12-29-2011, 09:15 AM

Here's a useful link about Herceptin side effects:

http://www.drugcite.com/?q=herceptin

"This report contains aggregated drug side effects and adverse events for Herceptin. The data has been pulled from the United States Food and Drug Administration's (US FDA) Adverse Event Reporting System (AERS), a database containing more than 4,000,000 adverse event reports."

The main site, where you can look up any drug, is here:

http://drugcite.com/

Kroesen · 12-29-2011, 09:37 AM

rhondalea,

Thanks for the information. I think my rash is finally disappearing. I am so excited. I still see it all over my body, but it isn't as raging red as it has been. Hopefully, we will be ready to figure out what happened so it doesn't happen again. I start RAD next Wednesday so hoping it is gone before then.

Arlyce

atuck · 01-07-2012, 09:09 PM

I know this is not HER2 related but my husband is on procarbazine for a brain tumor & he has come out in a rash exactly the same & it is driving him crazy, it seems a lot of these harsh drugs have nasty side affects, he has been told to come of his drug until it subsides.

pmm10414 · 01-07-2012, 09:25 PM

The atarax comes in a cream also. It drove me crazy until I used pills and cream.