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

[astrid]

I finished my year of herceptin in May of 2007. I had quite a few side effects that were not listed in the printed material for the drug. My blood pressure rose from 130 over 70 to 155 over 85. It is back to 130 over 75 at last check. My eyelashes fell out every three months over the year. My hair grew really slow while I was on H. But the worst part was the headaches that I started to develop the last few months. I am not prone to headaches and I would get headaches that put my in bed for several hours, a week after my treatment. Have not had a headache since I have been off. I also had to take my infusion for over an hour every time or the headaches the day of infusion would be bad. I had to have a driver to take me home because I would tire all of a sudden. My drive was an hour and I could not risk it. When I got home, I had to go to bed. The bad side effects did not really start until month 10. We quit my H one treatment short of my year protocol because my reactions were getting worse. I did not realize how bad I felt until I see how good I feel now that I am done.

[Nora B.]

gerri - i've been browsing through this thread looking for anyone who is still experiencing side effects months after finishing herceptin and i saw your post. if you don't mind, what side effects are you still experiencing? i finished in april and my joint aches and pains and swollen feet and fingers actually seem to be getting worse...
nora

[Lani]

Couldn't access your profile. Are you ER+ are you getting antihormonal therapy, are you postmenopausal, have you had your ovaries out?

The effects of chemo are long term and may have thrown you into premature menopause. Estogen deprivation can be hard on the joints and that may not improve for that reason after herceptin is stopped.

Knowing all these other factors helps one put together a picture of how people do on and off of herceptin to help guide others.

Let's see if others "pipe in"!

[kat in the delta]

NORA, Gerri,
Hi ! I've been finished with mine for I think... a yr+( my memory is terrible).
Yes, I am still having some of the side effects,
and a FEW are getting worse!!!

I just read an article in an MD's Journal that gave this opinion(not word for word)..
..as Now more of US are Surviving theChemotherapy & Cancer .Experience..

the researchers are Beginning to see that Dammage from Chemo's,etc.

..may not...even... show up UNTIL...8 to 10+ years AFTER stopping all
chemos,rads,..etc...
No one knew this before NOW...!!..

and......I personally hate to say it ..but most people close to you do NOT understand, nor will Never Understand what this has done to you
...... (( I do feel isolated at times..Thank you for this SITE !!))....
Others may think or Dare to Say:
" NOT HOOKED UP TO AN IV?" Then, "YOU CANNOT HAVE PAIN"!!

Well, I think it is only "AFTER" a PERSON has HAD... ALL ..

chemos, rads, surgery or whatever....
Not until all THIS IS OVER .and the DAMMAGE.. DONE.. IS ..This...
the true..
TIME A SURVIVOR IS STRUGGLING for THEIR DEAR LIFE !!!

This is WHEN almost EVERY CELL IN A PERSON"S BODY HAS BEEN

WRECKED !!! --the DNA or some part of EVERY CELL---SHATTERED !!!!

I think it will take ME YEARS--to build myself back..... if possible I'm trying... to control what I eat.,EXercise.,etc.,
Now STRESS..... is a little hard for me to control..


WHAT DO U THINK .... ???

Yes I have pain.. especially in my lower LEGS!! I think it is Not Only from the Herceptin , but as a result of receiving a combination of Chemo's.,rads.AND Herceptin.... My feet get Swollen...as well as my hands at times... I CANNOT wear any tight fitting socks or other clothing.., my fingers and toes..and feet get numb ..and I feel like I am walking on knubs, my mind seems to wander... and even gropes around trying to find a particular word.... I have a hard time going to sleep .... and really, I just do not look or feel well or LIKE I USE TO Before the Cancer Experience.

I am LIKE I AM>>>>> GOOD and BAD<<< and will NEVER BE THE SAME PERSON AGAIN !!!!!!
NO,, I canNOT do things that were once easily done. I am slower doing and thinking... and I DO NEED MY FAMILY TO PITCH IN AND HELP.

Kat in the Delta

[mabrooks]

Bonnie:
Had my third round of Herceptin last week - still no side effects except a bit of a runny nose. I am not getting any chemo either - just starting Armidex. Good luck.
Mary

[BonnieR]

Thanks everyone. I am posting again in order to include my profile with my signature....

[gin-tx]

Dear Bonnie,

I've had some side effects but nothing I cannot live with. I have driven on the highway with no problems. I had eyes examined in January by a new opthamologist, had big power change, don't know if it was the Herceptin or normal vision changes as we age.

I think my biggest complaint is constant runny nose, drives me nuts, and sleep problems. I am on Herceptin and another drug and have been for a little over a yr. I haven't had problems with fingernails, eyelashes, skin, etc. so far. I guess every person has different symptoms. Keep in touch and let me know how you are progressing.

ginkott1@aol.com

[astrid]

I completed one year of Hercpetin on May 22, 2007, almost two months ago and today I noticed my eyelashes are falling out again and I still have to keep my finger nails super short because they split.

[Andrea Barnett Budin]

My hairline never returned with the 2nd round of chemo. My hair is way thinner and weird, like it's not mine. I want my widow's peak back, or at least I want not to have a receeding hairline, or a *high forehead* all of a sudden. I want to put my hair back with a headband like I used to, only now that isn't *normal* looking.

I have 17 eyelashes on the top of my left lid and 14 on the top right. I have 6 eyelashes on the bottom left and 8 on the bottom right. Not that I'm counting...

I have NO eyebrow! They didn't grow back after the 2nd round of chemo (mean old Taxotere that did the dirty work of annihilating every tumor in my liver, but...).

I now have a mustache.

I never could go without shaving my legs, even midst chemo and being totally bald.

I'm just saying.

Astrid's post gave me a chance to whine a bit. I thank God for the gift of every new day! I live in gratitude and love, elated to be alive. But, I'm just saying...

I want my thick long lashes back that everyone used to ask, Are those YOURS? I have to draw and create eyebrows every morning, another little reminder that cancer's been here. Then I inform my body -- NO MORE CANCER! STAY WELL AND HEALTHY!, with as much passion and resolve as I can muster. All of which is obviously the good news. But sometimes complaining is so relieving...

Thanks for listening. Sending loving, healing energy to all my Soul Sisters, hoping you're hairy wherever you want to be and most importantly STABLE!

ANDI

[astrid]

Andi, I see you said Flushed Tamoxifen down the toilet. Do you think it hurt you more than helped you?? I have spoken to my ONC about my tamoxifen concerns, but she feels it is the standard of care for pre menopausal women. I signed up for a study for pre menopausal women. The arm I got was tamoxifen alone. I feel good, so I hate to screw with it. I am only 17% ER and PR + and HER2 + 3.2.

[Andrea Barnett Budin]

Hi Astrid,

July '95 was old school, different vocabulary and testing. I was ER/PR -- borderline. So what does that mean?, I asked. It means we can try you on Tamoxifen, in the hopes that you will derive some benefit from it. I was 50 yrs old and postmenopausal (after 10 yrs of perimenopause, irregular periods after being ev 28 days betw 10AM and 11AM all my life, practically hemoraghing when I got my period and having it for 10-14 days + hot flashing all day).

My dear, longtime friend Rochelle was dx 4 mnths after me. IDC. ER/PR+. After chemo she was put on Tamoxifen.

In Aug. '98 when I metastasized into liver I was found to be ER/PR- and told to flush Tamoxifen down the toilet. That it could have caused me to recur. I was also at that time, after *asking* to be tested for HER2, hoping to get in to a Herceptin trial if + as it was not yet available to the public -- I was found to be HER+ 80%, as they then put it.

Herceptin was fast-tracked by the FDA for the aggressive Her2's who were in a *lottery system* to try and get the drug and save their lives.
It became available to all Sept 28, 1998. I began taking it, in addition to Taxotere started in early Sept as I could not wait to get in to a trial w/fast growing tumors within wks after biopsy, in Nov '98 and have remained on it -- to prevent the aggressive gene from overproduces, keeping it in line and me STABLE (since '99). I believe going off Vit H would mean I'd have many recurrences to deal w, w/chemo + Herceptin to keep on fighting. Staying on the *easy* chemo, Herceptin (which is a monoclonal antibody) is the path I'm sticking w/. My oncs all concur. My insur co is not complaining. My ECHOs keep me informed re any heart problems. Dr. Pegram told me in Feb '06 out in Calif that if I was going to have heart problems they would have already shown up.

Hope this answers your questions and concerns, Astrid. If I can add anything, just ask. I am here for you, and any one who is in need of information, support and/or inspiration. Sending you loving energy...
ANDI

BTW, Rochelle remained on Tamoxifen for 6 yrs, not willing to give it up at 5, believing it was keeping her alive and well. Has now been off it 6 yrs and no recurrence.

Two different situations. She was lucky Tamoxifen could work for her. Though HER2 is highly aggressive, it is a form of bc that is responsible for 20% of bc. Knowing what causes my bc is a +. Because they've isolated the gene and developed a targeted med (Herceptin) to prevent the defective gene to misbehave. It's the good news and bad news all rolled in to one. But I am grateful for the Herceptin smart bomb with each new day. I personally hugged Dr. Dennis Slamon and thanked him for saving my life. Wow! Was that a thrilling day! For me and for him. He was elated meeting me, seeing the fruits of his labor.

[myraazzopardi]

Hello Lani

Have had about 5 sessions of herceptin after lumpectomy chemo and rads nodes not affected. After first session had 14 hours in bed with god knows what, fever cold just could not funcion just laid in my bed till must have fallen asleep. Next session went with my book " Love Peace and self curation (In spanish which I borrowed now I cannot get a copy in any language) either the book helped odr my body knew what to expect. Must admit I feel no side effects whatsover nothing. Hope that I have not spoken too soon.
I would like to know about sunbathing in moderation and herceptin. Hosp. has said no.

Take care.
Myra.

[Adriana Mangus]

Hi Myra: Beautiful Costa del Sol!! I was there October'06. I did not find your post until now, I would have visited you..:-)

Whos' the author of the book you mentioned? Love Peace and Self curation..

I work with a girl from Madrid, her name is Marimar. Es muy linda!!

Have you ever visited us?? How are you doing with treatment, side effects, etc. I'd like to hear from you...Thanks.

[myraazzopardi]

Hello Adriana. I amso sorry have only just read your mail. Thank you so much so great to see how well you are doing. Please contact me whenever you wish on info@costaadvicebureau.com I live on the beach and though swam with a dolphin a month ago have not been swimming since as has some discharge from my breast a little swollen which seems to have gone down now. I have not had a pet or any scan since before the tumeroctomy in fact dont even know what they are. Please let me know if you visit our area again. Hasta pronto. Myra.

[myraazzopardi]

Sorry Myra again. Author of Peace love and self curation. American author Bernie S. Siegel. He gives talks around the united states. Wish that I would give myself the time to follow the tips that he has learnt from his patients who have cured themselves. ( With all the assistance and medication needed from the medical profession).

[Nancy B.]

Ladies,

I am unclear from reading the various posts how and whether we know certain side effects are caused by Herceptin or earlier chemo drugs. In Oct 05 I was diagnosed with Stage IIIc bc (less than 1 year after a clear mammogram), ER+/PR+, Her2+. Had lumpectomy and axillary nodes removed, did 4 cycles of AC, followed by weekly T+H for 12 weeks followed by 40 weekly Herceptin infusions. Clear PET/CT in June 2006, no evidence of disease since and did four more months of herceptin (once every 3 weeks) until MUGA went from 70 to 52. Stopped herceptin 6 weeks ago.

I have felt great throughout my herceptin treatment, except for extreme stiffness in hands and feet upon waking in the morning, which goes away after walking a minute or two. I believe this actually started on the Taxol. So does anyone know whether this is the Taxol lingering on or the Herceptin, and how long will it last? It doesn't seem to be getting any better. I'm 52 and exercise a lot and eat a healthy diet.

Thanks for your thoughts and suggestions!

[Andrea Barnett Budin]

I had no stiffness in hands or feet (with Taxotere or on H so long). I do get leg cramps at night. Must stand and press toes to floor and the pain goes away. Hurts, but is easily rectifiable.

I HAVE NOT HAD EYEBROW SINCE '98! Now this of all things is ANNOYING. Like losing a breast in '95, the bald head was somehow worse in many ways. I would like my eyebrows back. ANDI

[Nancy B.]

Andi - did you have any symptoms/advance warning of your liver mets?

[Andrea Barnett Budin]

Nancy, After initial dx I got ev 3 mnth comprehensive bld tests. In Jan '98 my doc called and said EVERYTHING IS GOOD. Good, I echoed. Well, you just have slightly elevated liver enzymes, but it is very slight. I wouldn't worry about it. Okay. End of conversation.

3 mnths later -- same exact discussion. What could be causing that?, I asked. It could be a lot of things, your cholesterol med, a lot of things. I wouldn't worry about it. For me, it hung in the air. I do not like any of my #s not being within *normal* range, even slightly off. I question them!

July '98 -- same scenario. I took charge. Can I have a liver sonogram? You mean an abdominal sonogram. (He thinks.) I guess we could substantiate that (was he thinking about the insurance co. paying?!). I'll write you a scrip. Do you want to make the appt or should I have Renee do it. I'll call. I went for sono. Radiologist apologized but said he couldn't be sure what he was looking at. (I think he knew.) I have to send you for a CT scan. I'm sorry. Not a problem, I thought, better to be sure...

CT scan results came a few days after being taken, doc called and said, *abnormal* cells. I was waiting for MALIGNANT / BENIGN. Hanging by the phone. My husband calling every half hour. Why don't you and Paul come in this afternoon and we'll talk. I called Paul and reported. What does that mean?, he asked me. I didn't know. I was guessing *pre cancerous* cells, hoping, ever optimistic. My tumor markers were *normal*.

I was told I had multiple tumors in the liver, most likely malignant. I was already 4th stage metastatic ILC (w/2 nodes out of 18). Liver biopsy confirmed the worst. I CAUGHT IT! Months before tumor markets started to climb. I can't go by tumor markers, onc told me for future.

What you have is inoperable, incurable and you will be on longterm chemotherapy for the rest of your life. Well, inoperable was good, keeping me strong for the chemo. Incurable, okay, ca is a *chronic* condition, must be watched vigilantly, but they have many weapons in their arsenal to *control* it. You just have to find the right recipe for you. And longterm chemotherapy turned out to be longterm *monoclonal antibody* which is a cake walk compared to... So I called a miracle to me, lousy prognosis, less than 15%... Shocked I'm still here. That is *they/the docs* are shocked. I felt confident, full of faith, that I would be in that little group that survived. I believe with all my heart that attitude, and what we think all day, calls our desired destiny to us. I wish every woman on this board NED. I send my Sisters love, compassion, prayers, admiration, gratitude and awe... ANDI

[Nancy B.]

Andi - Many thanks for your thorough description of what happened. I also have been very pro-active with my treatment - even got my ovaries removed so I wouldn't have to worry too much about possible ovarian cancer connection. Your experience is a lesson that we all must very vigilant about anything abnormal. It sounds like Herceptin has literally saved the day for you - congratulations on your excellent (under the circumstances) prognosis!