Please post your two cents on Herceptin "side effects" real or perceived! - Page 21

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.

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

pmm10414 · 01-07-2012, 09:25 PM

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

Kroesen · 02-08-2012, 12:03 PM

I have decided that one cannot tell what side effects are from which drugs. After working with an allergist and starting steroids and antihistamines, I figured out what gave me my skin reaction. I broke out an hour after they placed heparin in my port. It may not have been the Herceptin after all. So if there is anyone out there that is having similar issues, please don't right away focus on one med. Thanks for all of your responses. Two RADS left and then 6 more months of Herceptin.

mbhamel · 02-08-2012, 04:24 PM

I am 51 years old. I am getting many of the same symptoms in the previous posts here. Heavy legs, low back pain and tingling, very congested nose, slowed thinking and forgetfulness, night sweats not really sweating just terrible hot flashes waking me up in the middle of the night and can't sleep those only started since getting the Herceptin every 3 weeks. My nueropathy from the Taxol/Herceptin is still there in my hands and feet. My EF went from 62% when finishing AC down to 55% at my last echo. My oncologist called last week and said my Alkaline Phosphatase is also elevated and she wants to run some different blood tests when I come back to see her in three weeks. I just hope it's not mets to the liver or bones. I saw a couple of other posts saying that has happened to them and turned out to be not mets. I had my transplant surgery a week before that blood test so don't know if there was any meds in me from that still. I am thinking of asking my onc. to change it the Herceptin to every week to see if that makes a difference. But, I can live with it hoping the Herceptin is keeping the Cancer from spreading. I haven't had any scans or anything since last April so I'm keeping my fingers crossed and praying very hard.

Some other medications I am on is1mg of Ativan to help with the sleep issues. I have a script for 5mg of Hydrocodone but I took them very sparingly, Advair inhaler for Athsma, Fluctisone Nose Spray, and iron supplements.

YNieves · 02-20-2012, 02:55 PM

I was on Herceptin for a year, completed in 2010. 3 months later I had a rash on my chest which turned out to be local reoccurrence. I took Xeloda and Tykerb, I finished in the Xeloda on 8/2011 (and stayed on 1250mg of Tykerb daily. Most recent Petscan (1/2012) shows I have a 1.4cm lymph node on my axilla on the right side. All previous cancer was on left and chest wall. Onc. is thinking of putting me back on Herceptin and staying on the Tykerb. I am Ner 2 neu, Er/PR neg. My 1st Herceptin infusion, I had an anaphylactic reaction and was rushed to ER. I had to be desensitized to herceptin before I could accept it, 6 months later. Can all this posion in our bodies be making things worse.? I have had lumpectomy, mastectomy, radiation (twice) and hypothermia. Cytoxan, Taxotere, then adriamyacin and cytoxin. Herceptin for a year alone, then navelbine. Xeloda, Tykerb. Original Ca was DCIS in 2004. Cancer returned in 2009 as Her 2 neu. My side effects have been minimal on the tykerb alone. Very itchy dry skin on lower legs. Some fatigue. Rash around ankles (red spots?) I'll keep you posted once I start Herceptin/tykerb combo. Probably won't be till March.

oregon · 02-20-2012, 11:24 AM

I started Herceptin along with chemo in February '11. After surgery, I resumed Herceptin treatments and will continue them for a few more months. Originally I was on Herceptin every three weeks, and a month ago I moved to weekly treatments because the oncologist believed that my body may not take such a hit, if the herceptin was consistently in my system at a lower level.

I experience muscle weakness, stiffness in joints, and possibly bone degeneration - one of the my docs said it was degenerative :-(. I mainly deal with fatigue the day after the infusion

pmm10414 · 02-20-2012, 11:39 AM

I did the same. There are some articles on Internet that state weekly dose is better because it keeps constant dose in body. I had same symptoms even with weekly dose, but I can't imagine what it would have been like with larger dose every 3 weeks.

sarah · 02-21-2012, 12:36 AM

Are you on Femara? Femara caused bone loss for me and I took Clastoban to help my bones.

hello sunshine · 02-21-2012, 06:29 PM

I'm on my 11/17 herceptin. i'm having bad reactions, (last 2) very sore rash, breathless, splitting nails, weight gain.Some joint pain. I'm going to keep going untill i've had enough as it's making me unwell. My team are monitoring me.

lizely · 04-09-2012, 07:27 PM

I did TC x4 and H x12, finishing up this past February. My side effects were minimal - a small amount of neuropathy from the TC.

However, I have noticed that my blood pressure has risen considerably this past year and am concerned. It was always low and now it is high. Could this be due to Herceptin? (I am discounting other factors aside from a year of aging, as my diet has remained the same and I am a regular exerciser).

Since MUGA scans register your heart efficiency, if your heart can decrease efficiency from Herceptin, how does that affect your blood pressure? Does it affect both your diastolic and systolic levels? Will your heart efficiency return?

Need some help here.

NEDenise · 04-10-2012, 05:11 AM

Lizely,
I have experienced a similar change in blood pressure. I used to hover around 90/60...but since beginning treatment, have been in the 125/80 range. While it's not high for the average person, it's a BIG change for me. The cardiologist put me on meds, and my pressure is down where it belongs. Taking the "strain" off my heart has also made my EF start to rise again.

I'm not sure...but my docs seemed to think this was not an unusual turn of events. Is it possible for you to consult with a cardiologist?

Hope this helps!
Denise

oregon · 04-10-2012, 10:33 AM

Hi everyone!

I just completed Herceptin last week . . . hurray! And I'm beginning to feel some relief already. So I encourage anyone that is still on this drug that is does get better!

I'm 53, was postmenopausal and had great health at the time of diagnosis 12/21/10. Stage 1B, I had neoadjuvant therapy (abraxene, carboplatin, and herceptin) from 2/3/11-5/31/11. Bilateral in June '11 (no node involvement) and in July '11 continued on Herceptin. My oncologist said the clinical trials all involved adjuvant therapy, so he wanted me on the drug 52 weeks "post" surgery. I did last 9 months post surgery plus the 3.5 months prior to surgery.

In July, my Herceptin treatments started out every three weeks and in November '11, I moved to weekly treatments due to side effects. I experienced increased neuropathy in my feet (numbness), much more so than during chemo, and this continued until I completed the herceptin. I was tripping, had very little small muscle control in my feet and I'm already seeing improvement in just one week off the drug! I have weakness in my legs and joints. Getting to/from a sitting to standing position, I felt like I was 90. Thin nails, and at the tops of my fingers around the nail - I had severe cracking. Any little cut on my hand(s) it seemed at though the pain was amplified. When I think of this along with the increased neuropathy, I believe this drug somehow affects the nerves.

Thank you for collecting this information.

Alyce · 04-10-2012, 11:13 AM

Hi again-
I am wondering about Femara. I never had high cholesterol until post radiation, post, Herceptin,post chemo. I am in the 4th year of Femara and haven't run into anyone to ask about whether any joint pain has disappeared after the 5 year mark, stopping Femara. My Dr. doesn't want me to take any statins so I am hoping the cholesterol will also go down. I ended up writing a cookbook as a result of drastically changing our diet to healthy wondeful organic food. Can't blame the diet for the higher cholesterol.

laurab · 04-16-2012, 07:22 PM

I had my last Herceptin infusion in February 2012. I was never on any type of chemo.
My only side effects were the finger nail splitting and breaking and an occasional drippy nose. I have had 4 heart tests and all have been fine. My blood pressure has gone up , but I attributed that to the stress of it all. I wouldn't worry about Herceptin side effects.
Most people have not reported any severe side effects.