SEs from Herceptin???

GramE

Sorry that was an odd message, but the link is the same info inside the Herceptin package.   And it is dated 2005...   

jeanne46

Below is the best description of Herceptin side effects I found that included other things beside the heart function issue.  Another site I found listed depression as a side effect, but research is not definitive on that since there are other factors that can contribute to depression while taking Herceptin.

SIDE EFFECTS: Diarrhea may occur. If this effect persists or worsens, notify your doctor promptly. Report promptly: trouble sleeping, increased coughing, swelling of the hands or feet, bone or joint pain, persistent sore throat, unusual fatigue, pain/redness at the injection site, nausea/vomiting, dizziness, headache. Unlikely but report promptly: tingling hands or feet. This medication can lower the body's ability to fight an infection. Notify your doctor promptly if you develop any signs of an infections such as fever, chills or persistent sore throat. In the unlikely event you have an allergic reaction to this drug, seek immediate medical attention. Symptoms of an allergic reaction include rash, itching, swelling, severe dizziness, or trouble breathing. Symptoms may occur while the drug is being given; in these cases the drug infusion must be stopped. If you notice other effects not listed above, contact your doctor or pharmacist.

Anonymous

Hi, Moody.  Rhonda and I were both staged 2B; I had 3/16 nodes positive, she had 4/21. We (at the time) were both ER and PR-, and HER2+. We both took part in a clinical trial in which I was able to get the full 52 Herceptin treatments. Rhonda started having problems early on. I don't remember all the details, but she had to be hospitalized several times at near-death, because of heart complications. I believe her onc. tried Herceptin several times in several ways, but she did finally have to discontinue the treatment entirely. The cancer metasticized to her hip, spine, liver and lungs. About 3 weeks before her death, Rhonda had a series of really severe setbacks and finally passed in the hospital.

 Even with surgery, radiation, standard protocal ACT and a full year of Herceptin, my cancer came back this summer. Lucky for me, it was a local DCIS and precancerous material in the other breast. I had 'em both whacked off.  Despite my oncologist's reassurance that with mammo's and MRI anything suspicious can be biopsied and removed if necessary before it has a chance to invade, I have no intentions of going through that crap every 6 monthes for the rest of my life - I have other things I want to do.  All that being said, I still feel truly lucky and blessed to have been able to take the Herceptin. Knowing what they know about HER2+ positive cancers, I really believe it's probably saved my life. I can get along just fine without boobs!

My heart goes out to all who are suffering through treatment. I can't pretend to know how bad it is for anyone - I just hope and pray for you all that you can bear it out til treatment is complete and you can get that cute "graduated" certificate from the oncology nurses. Blessings.

 Connie

mamakaren

Moodyk13~ Yea I had to take a break and it  was the nicest month 1/2 ever! When i said cloud nine I meant you were asleep while i was awake ( had trouble sleeping). I do get depressed sometimes but it doesn't last for long. We share the same wish! I can't wait to put this behind me even though you only have 9 more to go. I'm right behind you. Have a goodnight

My big toe is also half dead it looks horrible! It looks like those fungus commercials on TV (eww) the darkness on hand nails have gone away but my feel look nasty. The black hasn't gone away either.

                                                        "QUESTION"

Do you gals think that getting Herceptin every 3 weeks is harder on our bodies then every week??Since there is a difference in dose? I want to know what you gals think, I want to try every 3 weeks because it hard to get blood work every week and then get poked every week for treatment. I thought that if i did it every week it would be less hard on my heart since i only took it 2 months and it weakened my heart muscle that fast.

ladybug22

I have been on herceptin every 3 weeks for a year now. i am do great. good luck

moodyk13

Thanks Conniefor your sad and "eye opening" story.  I am so sorry about your friend, I know that was devastating for you to go through.  I pray you and her family are doing ok.  It is stories like yours and hers that have convinced me not to chance it with 9 tx's and I am starting back up with them Tuesday.

mamakaren I have always gotten Herceptin every 3 weeks.  I actually wish I could get it more often so I could be finished quicker, but my onc has never given me a choice, just says "every 3 weeks".

jeanne thanks for posting the side effects, it helps to be reminded so I will know they are not always a "figment of my imagination!"

GramE

I had my first usual every 3 weeks dose of herceptin only yesterday.   Dec 18 I had the load dose and will continue to August or so.   I see the onco every 9 weeks and only then do I need blood work.    Do you have a port, mammakaren?   

I do not think that getting it every week will be quicker, as it is meant to be taken for a year total, or even longer.   Good luck to everyone and have a good weekend. 

carlag67

MOODYK13,

I am with you.  Tell him to report it to SOMEONE because we are not all crazy!!!!  All that showed up on my bone scan was some mild arthritis on my feet, hands, and neck.  I am 41 years old and that is normal.  But I think it has worsened.  I have not had abone scan yet since then. 

You are right about the SE's. They are easier to deal with than the chemo.  That is why some of us say "Oh there are really no side effects"  because we compare it to chemo.  The doc's say it can't be from the chemo. It can't be from the herceptin. BLAH BLAH YADDA YADDA YADDA

MAMAKAREN,

I can totally relate to you too!  I hurt at night.. My hands and feet and my back.  When I wake up in the mornings, it takes a while being up before I can walk without limping.  I have hot flashes all night cause I am now in menopause, which has caused a whole set of other SE's like my pooker has dried up like a PRUNE!!! 

I am glad to know that I am not being petty like the doctors make you feel.

flyrzfan

oh...it's always so nice to find a thread that reassures you that you are not crazy, losing your mind or a hypochondriac (made up spelling). I have vomiting, headaches, bone/muscle/joint pain, wicked tiredness, rash on my face, blah blah blah. My onc doesn't discount the SE's -she was just surprised at the number and degree of issues. After a second bout of vomiting after my last infusion we are stopping treatment long enough for me to reschedule a surgery and complete it...then I will start back up with weekly doses. I will still have to go until August, it will just be a 30 minute infusion every week instead of a 90 minute one every three weeks. I seemed to tolerate the Herceptin better when I was on weekly with the Taxol...then my primary issue was fatigue and joint pain-but joint pain that didn't leave me in tears -unlike what I get now. THANK YOU Connie for sharing your personal story with this...it does reinforce the need to stick with it unless its just absolutely impossible to do due to the side effects.

Good luck ladies...

mamasarah

Hello -  I'm joining the bus!  I had my first H treament on Tuesday and had bad chills, so they had to stop the infusion for an hour.  I'm glad to read about the "lack of focus" SE, not because it's a good thing, but I lost my laptop the day after, and that, BY FAR, had been the biggest side-effect I am also getting Taxotere and Carboplatin with Nealasta shot, so who knows why I'm feeling the way I do.  I had headache and jaw pain yesterday, so far so good today. 

Take very good care,

GramE

I discovered that I need a saline drip along with my herceptin.   Hydration is one key to flushing this through the body and I try to drink something every hour I am awake but not alcohol...   I keep a bottle of water in the bathroom.   Drink, drink it helps flush the drugs through your system.   

My worst side effect is the constant neuropathy in my ring and little fingers.   Have to keep going back and checking my typing and I had been an 80 wpm touch typist.  And the drippy nose - someone needs to invent a nose diaper.   Overall, a small inconvenience for me.   HUGS,  Nancy

Anonymous

I got my AC every 3 weeks, Taxol weekly and Herceptin weekly, too. This was the schedule dictated by the trial study I'm part of (they are tracking all participants for 15 years). Along with the Herceptin, I was given Benedryl before and saline during - maybe that's why I coped so well. Just had the weird nails. I agree, the Herceptin is so much easier than the chemo.   I also had a port. I swear, we should all be born with these things.  I didn't want mine removed because getting at my blood is so hard to do.  Hang on, ladies - this won't last forever. I know I'm repeating myself, but I really believe Herceptin may be the best weapon we have to fight our Her2+ cancers.

Mocity

I have two more tx's of Taxoll and Herceptin and then will just be getting Herceptin.  My nail beds on my fingers and toes are so tender, turning colors and the big toe nails are about to come off.   My Onc told me it is the Taxol.  I am praying it is that and not the Herceptin.

Ejlj, Did it hurt when your toe nails came off?  Mine are going to come any day now.  They really hurt.  Any tips for dealing with this.  My fingernails seem to be following suite.  I am praying they will stay on... but boy are the tender.

Sassa

mamasarah,

I always had chills with my herceptin treatments.  Because I live in Florida, I looked upon them as my personal air conditioning.  I would sometimes go shopping after my infusion with goosebumps in humid 90+ degree weather.   

GramE

My toe nails lifted almost off the nail beds and I was afraid of snagging them or some fungus getting under.  The onco said it was ok to cut the dead part off but to soak the snippers in rubbing alcohol before.  That worked pretty good, but from time to time they do hurt.  That was in August and they are beginning to grow again.  When I wear shoes, they are round toe type and plenty of space so toes are not crushed.  Otherwise I wear Crocs around the house.   

Finger nails did not all lift, but 2 on each hand are  half dead.  I use an emery board to file them down to the end of finger tips.  They are very tender and hard to button buttons or open rip offs or pull tabs.  I cannot put in post earrings either which is not all bad.  Some of my lever backed ones are pretty snazzy !!!   

snowyday

Just noticed this as I was reading up on another medication, why don't we all call in our SE's once and for all and maybe they won't act as if we are crazy or hypo's.  Just a thought, I'm Oh and one other thing, I read about a women using listerine on her finger and toenails to stop the peeling, it's seems to help her.  I have made a soap in a pump with three equal parts of Rubbing Alcohol, Green Dish washing soap and liquid dove, no problems other than breaking and nothing on my toes' yet!  Report Problems to the Food and Drug Administration

 

You are encouraged to report negative side effects of prescription drugs to the FDA. Visit the FDA MedWatch website or call 1-800-FDA-1088.

JudeBB

Hi everyone,

I didn't really have bad side effects from Herceptin, abdominal pain but only for a day or so.  I still can't taste anything!  Everything tastes like cardboard! And I still have the neuropathy in left hand. Finished my herceptin in May 08

MareJo426

Hi,

I was wondering if anyone has the side effect of a blocked ear.  I don't know if this is caused by the remains of the chemo, the herceptin or that I just may have a blocked ear.  I do have the numbness in my little finger on my left hand and the runny nose.  If any one has had trouble with your ears could you let me know, please.

GramE

Adding what may or may not be a side effect:   I have always needed reading glasses for newspaper and typing/computer work.   In the past few weeks I realized that I no longer need them...   Whoo Hooo !!!   

My distance vision was always excellent, could read the label on a shirt at 20 paces !!!   BUT,now I can't tell the difference between 395 and 495 on highway signs. And I cannot read street signs while driving past them.   Phone call to the onco and she says she never heard of a reverse in eye sight such as I seem to have...   Will schedule an eye exam and see what happens.    

Sassa

lefty, what you are experiencing is a normal part of aging that is called presbyopia or "loss of accommodation " in the eye (see attached website)

http://www.3-rx.com/presbyopia/default.php

For some of us, the changes causes visual changes that are sometimes beneficial.  In my cause, I have always been extremely nearsighted.  As the loss of accommodation started in my eyes in my forties, the changes in the lens curvature worked in my favor and I didn't need bifocals until I was 50.  At this point, I find that I can not wear my glasses to read or do close needlework; I can see better without them at near distances.

fightinhrd123

Im wondering if herceptin is making my legs hurt again.  I suffered through really bad leg pain during taxol.  I had surgery after chemo and the pain went away and then started up again.  Reading this thread has made me realize that it started up again right around the time i started herceptin!!   Does this sound plausible?  Ive been walking and last week my lower back hurt after i walked 3 miles.  I have a lower back xray scheduled as it feels like ive trapped a nerve, but also my legs always ache!!!!  Anyone else?

TIA,

Laura

GramE

Thanks Sassa, but the opposite has happened to me.  I always needed glasses for close work, but not do not.   

Laura:  I have had achy legs from Herceptin.  Stiffness and feel like I need some oil in the joints like the tin man in Wizard of Oz.   

snowyday

Jeanie36, thankyou for posting that list of side effects, it's more than I've found.  I really am upset that my SE's aren't being taken seriously.  The insomnia is driving me crazy, when I'm awake I'm half asleep boy I'm sick of it.  I am going to show the listing se's you posted and make my onc read it. Oh and since my last treatment I've had the hiccups at least 5 times a day drives me nuts.  So I will mention it as well and probably get that " your nuts" look again.  But I'm going to phone in everyone.  I wihs I was as lucky as thewomen that have herceptin with no problems.  Guess I have to keep plugging at both,  Thanks for listening ladies.  Good night nwo.

snowyday

Oh yeah a stupid thing happpened this morning I'm wondering if it's happened to anyone else. I was doing laundry opened the cap and somehow bruised my right hand ring finger, It's really blue it stung for about five minutes and I didn't look at it right away but it hurts and still hurts it's weird.I have a doc appt tomorrow but she is a family doc and doesn't know alot about this, so just wondering if I'm the only one.  Oh and it hurts to type, its so stupid.  Appreciate any info. Thanks in advance.

GramE

snowy, I opened my car door one day and dropped my keys.  Somehow I had this big blue lumpy bruise on my inside wrist.   It may be that we are more suseptable  to bruises - or however it is spelled.   I put ice on it and the lump went down quickly.   

GramE

This is a link to the full disclosure included with Herceptin.   When you get meds from a pharmacy, you can ask for the "insert", but since Herceptin is given to us via IV, we do not have access to the "insert".   

http://www.gene.com/gene/products/information/pdf/herceptin-prescribing.pdf 

hiker

 I've had 6 Hercetin, in addition to the six TCH and rad.  I thought I had no SE's until I read this thread. Now I can see that my headaches, nails and insomnia might be due to this drug.  I get the infusion in 30 minutes, but sometimes have to wait at the hospital an hour or more for them to receive it from the pharmacy. How do they Drs. decide that one year is the right amount of time to take this drug?

moodyk13

hiker, that is the "magical" question!  How DO doctors decide the perfect # of treatments???  I did TONS of research on this very subject and spoke to my onc in depth about it, because I wanted to stop after 9 treatments.

The only two "organizations" (for lack of a better word) that have "declared" the correct number of treatments are bias.  One is from the drug manufacturer (the ones who make $$), they say "18", however, now they are investigating 2 full years.  The other is the universal insurance agency in New Zealand (the ones who pay the $$) say that 9 treatments are enough and won't pay for women to have more than 9.

The biggest problem is that Herceptin has only been used for adjuvant therapy about 5 years, which means there is no way long enough to gather concrete data.

The second biggest problem are the two company's touting this info have monetary interest in the # of treatments.

Where does that leave us???  Excellent question!

jill323

Hello all !

I have been reading this with interest because I started my first Herceptin treatment on January 14.   I finished chemo in December, and they held up giving it to me with the chemo because the chemo regimen I was on took so long to administer.    However, the 90 minutes I am there for herceptin is quite an upgrade from the 5-6 hours chemo regimen I was on previously.

Anyway, after my first herceptin infusion I got severe chills (never been so cold in my life) and got a fever that hit above the magic 100.5 number for which you have to call the on call oncologist.    Wouldn't it figure.. make it through 3 months of chemo without having to call once, get to the "easy" stuff and THEN have to call.   However, the fever was easily knocked out by Tylenol and lasted a little over 24 hours.    I called my oncologist the next day and she says I am evidently "hyper sensitive" to this drug.   I see her again on Feb. 4 when I am supposed to go in for my next infusion.   Not sure what she is going to do.   I actually chose to go the chemo route to be able to get this drug (herceptin is not yet indicated without chemo).   So.. if it means getting a fever for 24 hours vs. not getting this drug - I will put up with the fever (Happyme's post above goes a long way to explaining why).   

I am assuming the doc will adjust my pre-meds due to this, but am not sure yet.  So.. I guess my question is.. did anyone else get this fever/chills thing, and if so, what did you and/or your docs do about it ?

As for other SE's - the only other ones I see so far are the runny nose for a couple days and my face has broken out (feel like a teen ager).  

Jill

nobleanna007

Hi Everyone,

   I am so freaking mad right now. Why I had not seen these posts before. I really want to scream at my Onc. She has consistantly dicounted all my bone pain being caused by Herceptin. Not only have I had severe SE from all the meds they give me and she knows this. Had to stop Herceptin for a month due to low Muga but I never put it together cause I was going threw rads at the same time. She has come right out and said these bone aches are not a SE of herceptin or the nerve issues I have. I have been driving myself crazy trying to figure this out. I have been to a neurosurgeon who then sent me to a neurologist and yes I do have slight neuropathy, but is not the full cause for the pain. I then went to a rheumatologist thinking maybe I had Fibromaylagia or something which I didn't. Then came the scary thoughts Bone Mets. I live on pain meds have tried everything from neurotin to lyrica and now I am on cymbalta. tried physical therepy which made it worse. Had to give up my job the list goes on. And in one hour I just learned I am not crazy this is real. And how do I get my oncologist to believe me. I will suffer through this cause it will save my life and I only have 6 months to go half way there. I am just so fournate to have you guys and know I am not crazy. I am wondering if they give me saline with it if it would help me. I just don't know how to go about suggesting it to someone who does not believe these problems come from Heceptin. You are all right in we need to get this documented someone needs to know this is happening. I know I am ultra sensitive to meds so why wouldn't she take that into account instead of knowing how much this has changed my quality of life. I am very thank-ful I am getting it and I know and hope the SE won't be forever. Gosh I feel good I have been going out of my mind with worry, having scans next week and the thoughts in my head were not good.

    All I can say is thank-you thank-you for this thread!!!!!!