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

[Judy Smith]

I have been on Herceptin for 1 and 1/2 years. I began with Stage I BC and reacurrance now has me at Stage III. My side affets include nail splitting, dry and splitting skin around nails, feet and some leg cramping, and joint pain (a little rib pain lately also). I feel fortunate to be feeling as good as I do and I am thankful that we have Herceptin to help us fight this disease. Hearing about others side affects has helped me calm myself when I feel something new and want to put a lable on it---Thanks everyone for posting.

Judy

[atdec05]

Hi Judy,

Did your recurrence happen on Herceptin? Did you have Herceptin when you were Stage 1?

I was stage 1 and had a recurrence noticed during my last month of Herceptin. I am now doing rads and will then do Taxol + Herceptin. The doctors think even though my recurrence happened on Herceptin there may be synergy when given with Taxol. So I'll end up with 1yr 3mos. worth of Herceptin

I had joint pain that is improved because of Glucosamine & Chroniditin. Also had elevated blood pressure that seems to be going down. Maybe exercising again is helping.

- Anna

[gin-tx]

Joint pain from Herceptin.

Yes I have lots of back and leg pain plus am dealing with other back issues. I told my onc nurse that I feel like I have flu type ache all over my body. He gave me a printout of the medicaiton, side effects which also listed uncommon side effects. I hope going thru this is worth it. My dr wants to send me to a pain mgt dr, don't know if I'm willing to go that route, tried similar treatment before and it did not work, plus very expensive.

Keep me informed of your progress. We have to be supportive of each other.

ginkott1@aol.com

[hutchibk]

gin - check out the thread about Neurontin on the main board from last week... I wonder if that would help you with the joint pain?

[harrie]

I was having some muscular fatigueness. Kind of hard to discribe. Like when you workout your muscles hard, but it seemed to linger. Not exactly sure if it is from the chemo (TCH) or herceptin. But I found eating more bananas made it better. Maybe my potassium was being depleted.

[hutchibk]

I eat a banana EVERY morning - and often in the middle of the night if I have a really bad leg cramp. It relieves BAD leg cramps for me within about 5 minutes. Bananas are amazing!

[kat in the delta]

Sometimes I think these Oncs. are afraid of their own mortality and death so they do not answer any questions...and then again, they also may not want to weigh the pros and cons because there may be more Cons vs a chemo. Then, they wouldn't make any $$. I think we all need to be proactive in listening to teleconferences and looking into our treatments and --like here--talk to others going thru similar treatment of their c. By the way, there is a conference on the internet tonite or evening at 7-ET, 6-CT....at HeathTalk.org...Someone is answering ?'s on the aftereffects of Chemo. It may be HEALTHTALK.com,or org.....check it out...kat in the delta

[Andrea Barnett Budin]

Boy, can I relate to deep muscle pain! Arms and legs. Like you've been beaten with a bat and left in the street. I even had it years after finishing Taxotere. I read that some of you wonderful ladies had only slightly running noses and drippy eyes and splitting nails. Some have known the incredible fatigue I had, and still do to a degree. When I mentioned to my onc that I KNOW IT SOUNDS WEIRD BUT I STILL FEEL THAT DEEP MUSCLE PAIN IN MY ARMS AND LEGS AND I KNOW IT'S BEEN YEARS SINCE I HAD CHEMO, he said, Not at all. A number of his patients make the same comments. I decided OKAY! Maybe that means the Taxotere is still beating the hell out of any lingering cancer cells.

You've got to put a positive spin on it. I would do the "freight train" drug again, since it stomped out every one of my multiple liver tumors in '98/'99 and I am still NED. Of course I didn't know the aggressive chemo was so named because you feel like you were hit by a freight train when you take it. I just thought I have a highly aggressive cancer (4th stage, 9 cm in the breast to begin with, in '95) and HER2+ into the liver and moving fast (according to CT scans and such) so -- hit it with the strongest tool they have in their arsenal.

I would hold on to the bed and move carefully to the wall, then to the next area to grab a hold of. I would put one hand on the shower wall, just to psychologically keep myself from collapsing to the floor. I'd only shower when my husband was home. I crawled up the stairs. I sat when talking to people, feeling my legs giving way. I held on to posts or pillars while waiting, or my husband's arms if available. But I got some makeup on, blush and lipstick and some eye shadow, my wig, my earrings and rings and a nice, neat, comfortable outfit and flats. I looked great. Or so I was told. You can't be sick. You look too good. That made me feel "normal". I had a smile on my face, because I KNEW I was going to survive, despite the odds. The joy and harmony of that knowing was apparently visible to all I encountered (when I managed to venture out of my bed, or out of my house). I met friends for dinner with Paul, to get him out with people. We'd talk and laugh and hug and give each other I love yous. That was all very healing! Laughter, love, hugs, people you truly care about -- that's so therapeutic!

Focus on healing and see yourself far into the future. Be good to yourself. You deserve that. Love yourself, and live with your heart full of kindness, generosity and gratitude for your many blessings. That's my best advice.
I was fifty when first dx and now have lived to greet and know 5 grandchildren! When I turned 60 Paul and I went to Hawaii. I had it in my head for a year that I would go parasailing. ME! Terrified of heights, bridges, driving into the city, spiders and palmettos bugs. I wanted to get as close to God as I could to shout THANK YOU! Thank you for my life. For my husband, two daughters and grandchildren (I had 3 at that time)! And I wanted to say loud and clear my personal mantra that I kept repeating (mostly as a goal) -- I AM STRONG, BRAVE AND DETERMINED!!! The guy in the boat that pulled me (and Paul) along, in tandem, took a picture of us. I keep it in my "brag" book that I carry with me of my children and my children's children. I was full of bliss and serenity.

So, I don't know when you count from, initial dx in '95 or mets in '98 -- I AM A SURVIVOR, a walking miracle -- and SO CAN YOU BE. BELIEVE.

Much love,
ANDI

[bailey]

Ladies - I am overwhelmed with what I'm reading about everyone's reaction to herceptin. I am Stage 4 mets BC - I started my chemo, second time around in 2003 for mets to the lung and liver. With the chemo I also was given herceptin. Once off the chemo at the end of 2003 they kept me on herceptin and my last one was last Wed. I would go for herceptin every 3 weeks. At no time did I have any side effects. I just turned 54 in Jan., I have always had nail growing problems so I just keep them short now, the dry eye syndrom can also be from menopause and there is a eye drop product called Soothe which I use about 4 times/day and helps keep my eyes moist, for any dry skin I always moisturize my body after a shower with body cream, not lotions as they are not as hydrating, I work out in the gym each morning - 5 days/week which includes spin classes 3 days/week. Yes I'm tired at times but I push myself to workout because I know I'll feel better when it's over and also I have the joint problem but that's from the Arimidex and that's why I continue to work out to keep my joints moving. I had gained weight after chemo but have since lost it - 18 lbs. by eating 3 meals a day and 2 little snacks - I eat healthy and stay away from alot of carbs like breads and pastas but eat alot of salads and fish and grains but of course with Italian my favourite food I eat it at least once per week. I enjoy a good glass of red wine each night and sometimes 2 on weekends. I guess in alot of ways I just didn't even want to know about the side effects because when I know about them I get them so I just say I will not have any. I wish I could have stayed on the Herceptin, it was easy for me but now will be starting tykerb/xeloda next week. Alot of the weight gain can be caused from the craving of carbs but I truly believe that the exercise has helped me so much. I do an hour/day and before I go to the gym I get up at 5:30am to walk my dogs then off to the gym. Like I said, I am tired but afterwards I feel great and have done something wonderful for my body. I also take 4000 milligrams of fish oil/day - spread out 4 times/day - a good high quality fish oil - helps with the immune system and keeps the skin moist. Along with that I take 1 400 mg. of Folic Acid but I divide it up into 4 pieces and take a 1/4 with each fish oil. I feel great!! I hope this helps someone.

[Chrissy]

I have just started Herceptin along with Taxol. Had bone/joint pain for about 3 days, but it has gone away. Have a drippy nose continually. Have second treatment this week.

[bailey]

Chrissy - not sure why you have the drippy nose maybe from the Taxol. I had no problem with that on Herceptin - could it be allergies at all? Just a thought?

[skye]

Hi, if you look at the official Herceptin side effects, a "flu-like" condition and or drippy nose is very common for the first week of Herceptin. I didn't know it at the time and thought I was getting a cold that just never developed, then I looked it up and went A-ha! It disappeared as the week went on but can recur at times from what I understand. Keep those Kleenex handy! - Skye

[gin-tx]

Dear Judy,

I think every person has different side effects. I have insomnia, body aches, constant runny nose, headaches, but no problems with nails or cuticles. I have been on Herceptin almsot a yr, this is my 2nd episode of BC, first in 1995, had lumpectamy and radiation. This was much more aggressive, Stage IV metastatic with tumor on spine, have had radiation to spine, lungs, now in holding pattern. Due for CT in a couple of weeks. At this point no spread to lungs or liver but tumor not decreasing either. Keep in touch and let me know how you are progressing. I hope you continue to do well and some day there will be a cure for this dread disease.

Hugs,
ginkott1@aol.com

[bailey]

Good luck with your scans - stay positive - you have done so well.
When I was on Herceptin they told me I would have aches etc. - I found the one thing that really always has helped me was working out and I do it at least 5 times/week in the gym, eliptical, spin classes, weights, but I keep by body moving as much as possible. As for the drippy nose, I have bad allergies so I'll just go with that but it's nothing I can't deal with - it's always going to be something I guess but different for everyone.

Stay positive and full of life everyone.

[Nora B.]

Thanks so much for doing this, Lani! I am so happy to read these posts and find I am not alone and not a hypochondriac! Are you going to try to synthesize the data and publish it somewhere?

I am Stage IIIb, finished chemo in July of 2006, and finished my year of Herceptin in April 2007. Received my herceptin every 3 weeks. My side effects started while still on chemo and my onc attributed them to Taxol, but they continued after I was well over with Taxol and they continue to a lesser degree still, a month after I've finished the herceptin.
Major complaint has been joint pain, particularly shoulders and knees. Some nights if I sleep on my side I can barely lift my arm in the a.m. for the pain in my shoulder. Legs cramp/hurt when I get up in a.m., or after have been sitting for awhile. Walk around like an old lady some mornings. Also alot of rib pain (so much that I insisted on a scan, thinking it was mets) that sort of comes and goes. Also it has turned my pre-existing acid reflux into a nightmare (constant heartburn/burping no matter what I eat). I know my vision has gotten much worse since this whole thing started, but that might just be age (I'm 44). Menopause brought on by the chemo in Feb. 06, have had hot flashes that I thought might be due to the herceptin. Have been very fuzzy-headed, too - attributed that to chemo brain. Slow growing hair and nails. Cracking skin on my finger tips. Mouth sores and bad taste in my mouth. Yeah, I do sound like a hypochondriac, don't I?! Really, the worst side effect for me has been the joint aches and pains. I know it's a small price to pay for this wonder drug!

Nora

[Lani]

Have you tried asking to have your oncologic nurse mix up your herceptin with normal saline instead of with the benzyl alcohol-containing vial that comes with it? Several on this board report less joint pains when that is done.

As I don't know your weight, and therefore not how many vials you use, this is easy if you use only one vial's worth. Otherwise, some have asked to have one vial mixed up with Normal Saline and the other with the normal diluent
(this is because the rest of the vial must be used by someone else due to the high price of herceptin, and if the rest of the vial is not used immediately some bacteria could grow in it because the purpose of the benzyl alcohol is to be a preservative and antibacterial I believe.

Not yet sure who I might pass along the info from this thread to...

[Nathan]

Lani,
I've learned so much from this site and I've only found it today!! Thanks for posing the question. I currently work for Genentech and although Herceptin can be a life saving drug for many, there are a few side effects to it. My wife is Stage IV with mets to her liver, lymph nodes in her neck and chest and her bones and has been on Herceptin for 3 months now.
Her side effects are nausea and vomiting, exhaustion, dry mouth and slurring of speech from time to time. She also shakes sometimes which I think might be seizures. I don't know if this is from the chemo, she's on two currently, or from the Herceptin. What I have witnessed personally, is the fact that this drug has saved many lives and that although the side effects of the drug can be bothersome, if given the choice, I'd rather be alive than dead.

[gin-tx]

Dear Skye,

So glad you have done so well with Herceptin. I too have drippy nose, constantly. I sometimes forget about it. When I think of it it seems to start in again.

I too have some side effects but feel lucky I have things I can tolerate. No itchy feet, by end of day I am just exhusted though. I come home and try to sleep for 30 min. Some days I wait too late to lie down, get busy with phone calls, etc. I'll be glad when I'm done with treatment, am getting real sick of it since it's been a yr.

Keep in touch and let me know of your progress.

hugs,

ginkott1@aol.com

[skye]

Hi Gin,
Yes, the nose is still dripping. The only other symptom seems to be a general sluggishness but I still feel much better than I did on Taxol. Feet have stopped itching too. I think I can do this! And I did get my onc to switch my schedule to every three weeks instead of weekly, thank goodness.
Glad you are doing ok, too! - Skye

[mabrooks]

I just started Herceptin on May 22nd. I finished mammosite radiation in mid April. I will start Femara in a few weeks my tumor was ER+ and Proges.+. I was lucky enough to not have to have any chemo. Due to my Her2neu 3+ status my onc recommended Herceptin 1 every three weeks for a year. The only side effects I have had are a runny nose and I seem to bruise easily. No nausea, no achy muscles.