Herceptin and Side Effects
 

Help!

I am in need of some input. I'm currently receiving herceptin every 3 wks and will continue to do so until next Nov 06. I had some concerns but after reading so many positive postings and receiving encouraging feedback I took the plunge.

I have received only 2 treatments and am noticing some minor (and unexpected)side effects. My eyebrows are thinning out (in a week or so they'll probably be a mere memory), fingernails are growing extremely slow (almost imperceptibly), hair on some parts of my body really thinning (not on my head...knock on wood). I've talked to my onc about this and she in turn emailed the other oncs at the cancer center and no one seems to have seen this before. Is this earth-shattering? Probably not, but a little disconcerting since (a) wasn't expecting this reaction and (b) after the whole alopecia experience w/chemo I was really digging having hair on my head, eyebrows and eyelashes. ;>)

I'd also like to take the time to thank each and every one of you who help to create such a supportive and knowledgeable cyber-community. Joe is an angel right here on earth for all of the blood, sweat and tears that I know he puts into maintaining this site/board. I hope you all enjoy the fellowship, love and family (not to mention good food) of this holiday season!

Denise

I've read and if you do a search...
 

you will find that others have experienced a slower growth of hair (ie. underarm, legs etc...not head hair though). I too have no leg or underarm hair (not a bad thing you know, saves on shaving:) Happy holidays and good health.

Rhonda

You're right
 

Rhonda,

I've seen various posts about slowed hair growth on underarms and legs but nothing regarding loss of eyebrows/eyelashes. My eyebrows were always rather dark and had fully grown back after chemo. Now they are quite light and thin almost non-existent on outerbrows. Same is true for my eyelashes...normally thick/long (even post-chemo) now noticeably thinner/shorter.


...and the beat goes on.

Hi Denise,

I have read that herceptin can cause some hair loss, and did question my onc nurse who agreed. The hair growth you got after chemo might have been true hair growth, seems my eyelashes and eyebrows grew in heavy as well as very dark facial hair along the sides of my face non of which I had before. The eyebrows with time have thinned considerably, the facial hair I Naired off and has not grow back in. My hair is growing back but slow and now have a receeding hair line! But the one consolation...no hair under my arms and only slightly on my legs.
Maryanne

Wow...your symptoms are very interesting..
 

Hi, Denise and welcome to the board...are you ONLY taking Herceptin???...usually, you lose the eye lashes and eye brows with either taxotere or some taxol chemo used WITH the herceptin. I have just taken herceptin alone for many years and I have the exact opposite problem...dark hair growth everywhere...even on my head..it is longer than ever..can't keep it trimmed and even waxing the legs and underarms doesn't keep it at bay. However..I use a good bit of vitamin D (with A in fish oil) and take the olive leaf..and I have suspected this extra hair growth is a side effect of MY supplements moreso than that of the herceptin. If you want to grow hair...usually Vitamin D will do the trick. For strong nails...you must take PURE magnesium....I know that is counter - intuitive, but it really works...builds bones back too...to learn more..google Calcium -Magnesium homeostasis.

Keep us posted,
Gina

DeniseWelcome!!! I too have had the fingernail problem...they seem to not grow at all and when they do, they split and peel. As for the eyebrows, mine are thinner also...I thought it might be age, as i am 53,, never thought about the Herceptin...I have been on it 2 years, every 3 weeks. I don't think they really know all the side effects yet...but all of us on this board who are on it can keep them up to date. Have a beautiful Christmas.

I have a question for those women receiving adjuvant herceptin. How long does your infusion take? How much of the drug do you receive each treatment? What premeds do you receive? Thanks.

Herceptin
 

I've had a "loading dose" of 8mg/kg which has been followed by 6mg/kg every three weeks. I get no premeds, the line is flushed well with saline before and after the herceptin infusion, which is set to run in over approx 90 minutes. There has been a previous thread (last week or so) on premeds that people receive.

currently in Taxol w herceptin for 4 treatments and then to weekly herceptin for a year.

After four months without hair on head, I was hoping that during herceptin, it would grow back. Jus a bit of vanity here!

I will ask onc nurse again on this. she previously said no side effects. Obviously, this is not the truth.

thanks for the info

MCS

Gina,
Just had my 3rd treatment yesterday and spoke w/some of the nurses. One of them pretty much stated that anything's possible given the various cocktails I've received this year. And yep....I'm only on herceptin. Go figure...

Denise

I have been on Herceptin since Sept. 05. I also have thinning eyebrows, eyelashes are OK. My toenails are growing with ridges in them and fingernails grow slowly and break easily. I have plenty of hair on my leges but none under my arms. I have plenty of hair on top of my head. I am also on Arimidex and Fosomax. I am 52, Dia. Sept 04, Stage2, Grade 2, Her2+++,er,pr+.

I've had two treatments of herceptin so far, and both times i've had terrible headaches. The first time, I thought it was like a bad sinus headache, and had it for about a week, and just thought it was a coincidence, but this time it happened again. It's like my head is going to explode! Has anyone else have the headache problem?


Sue

Susan;

I am given two tylenols with every herceptin treatment. Perhaps without this I would get a headache....I just don't know. Perhaps you could try it. My eyebrows and lashes are thin but I have taken to using an eyebrow pencil and think it actually looks very good. I had never done that before. Also my nails split and break but I believe it is from the taxol/AC. Each chemo treatment left white lines on my nails and as they grew my nails would split and break at the lines. I think I'm just about through with it...I hope. My question is about the hair on my head. It's quite short....and very curly. I have never had curly hair before and I quite like it. It's also very short which is convenience. I'd like to keep it this way if it stays curly. I wonder if it will. Any ideas.

Happy holidays,
Cathy

My hair started growing back after 4 months of taxol, carboplatin, herceptin, and zometa. My nails have been thin and splitting the whole time I have been on herceptin. I just finished 4 months of gemsar along with herceptin and zometa. I did not have any hair loss anywhere on my body with this cocktail. Blessings, Lu Ann.

Yes, I get two tylenols before herceptin, so that doesn't work, so far, my nails are fine! My hair is starting to look good, my hair was wavy before, but it's still too short to tell, if it's the same. I'm hoping by Feb, I can ditch the wig!

Sue

Hi Sue,

It's possible you're having an allergic reaction to the dilutant being used; here's a quote from the Genentech web page regarding dosage instructions for Herceptin, along with a link to the page:

"...If the patient has known hypersensitivity to benzyl alcohol, HERCEPTIN must be reconstituted with Sterile Water for Injection (see PRECAUTIONS). HERCEPTIN WHICH HAS BEEN RECONSTITUTED WITH SWFI MUST BE USED IMMEDIATELY AND ANY UNUSED PORTION DISCARDED. USE OF OTHER RECONSTITUTION DILUENTS SHOULD BE AVOIDED..."

Genentech/Herceptin Page
http://www.gene.com/gene/products/in...administration

side effects
 

I think it gets very difficult separating the trees from the forest, case in point is where for years herceptin was solely blamed for the cardio side effects and not until much later, have we been able to reduce this to concurrent herceptin and adriamycn and the presence of a gene. Most survivors on this board have had dose-dense chemo which are really dose-dense immunity killers. I think about the shingles post and know that shingles does not occur that often when one has a healthy immune system. Has this virus been activated by chemo or herceptin? I don't have the answers do question, "how we are to separate the individual drugs from past and present drug coctails and assign them to one particular side effect"?
Happy holidays
Al

Good point Al. Also, the Genentech web page I uses above lists headache as one of the side effects, regardless of the dilutant being used.

But Sue, bottome line is if you continue to have these headaches you should ask to have them checked out by brain MRI to be safe.

<3 Lolly

To Snoopy & MCS
 

I will have my 3rd Herceptin on the 28th.
My hair is growing back on my head quite nicely - although coming in grey. My hair eyebrows, eyelashes and alas facial hair came in quickly after finishing chemo.

I am on Herceptin alone.

The actual dose take about 90 minutes to administer and the pre-meds offered are Benadryl and 2 Tylenols. After my 3rd dose of Herceptin, I will elect not to take the Herceptin.

Hope this helps.

Cheers!

Joan

Ooops!
 

Sorry, Snoopy/MCS & Bubbles Mom,

In my post I meant to say that my cancer clinic offers Benadryl along with
two Tylenol as pre-meds to Herceptin and that they want everyone to take
the Benedryl for at least the first two or three times to ensure that there are no reactions........what I meant to say was that after my 3rd dose, I will elect not to take the Benadryl and instead I typed Herceptin. Believe me I will take the Herceptin for as long as it is recommended.

The reason I will try to take the dose of Herceptin without the Benadryl is because I heard that Benadryl weakens the effectiveness of the Herceptin.

I should also add that although my hair is coming in just fine, my fingernails are in a poor state as I got bumps and ridges, splitting ends etc., with the chemo and they still have not recovered - I think perhaps the bumps are growing out. My nails look as though I bite them and some kind soul gave me
a gift certificate for a manicure and pedicure for Christmas.....I think it will
be awhile before I can use it.

Cheers!

Joan

Ooops!
 

Sorry, Snoopy/MCS & Bubbles Mom,

In my post I meant to say that my cancer clinic offers Benadryl along with
two Tylenol as pre-meds to Herceptin and that they want everyone to take
the Benedryl for at least the first two or three times to ensure that there are no reactions........what I meant to say was that after my 3rd dose, I will elect not to take the Benadryl and instead I typed Herceptin. Believe me I will take the Herceptin for as long as it is recommended.

The reason I will try to take the dose of Herceptin without the Benadryl is because I heard that Benadryl weakens the effectiveness of the Herceptin.

I should also add that although my hair is coming in just fine, my fingernails are in a poor state as I got bumps and ridges, splitting ends etc., with the chemo and they still have not recovered - I think perhaps the bumps are growing out. My nails look as though I bite them and some kind soul gave me
a gift certificate for a manicure and pedicure for Christmas.....I think it will
be awhile before I can use it.

Cheers!

Joan

I just finished taxol/herceptin weekly for 12 weeks and hated the taxol. My skin got lots of rashy patches and spots, thankfully little on my face. My hands were so dry I lotioned them constantly wore those thin gloves at night sometimes with oiled hands. Although my nails peeled and chipped and some got black and blue, I found the constant lotion and oil helped as well as keeping a coat of natural polish on them. It seemed to help the sensitiviity I had. The same with my feet and toenails. Still have a lot of foor numbness. I have a pair of ugg type boots that even here in southern ca I wear constantly at home as my feet are so temperature sensitive. Had my first dose of Herceptin only. Had a mild fever 2 nights and felt really dragged out. I also noticed more pain in some of my breast surgery scars from last May and aching ribs. Had free tram bilateral reconstruction so do not know if it is the herceptin or more numbness wearing off and nerves regenerating. I do think the fever and excessive tiredness is the Herceptin. Did have one bad headache, rare for me. Am interested in anyone having similar side effects.I have been reading this site since last March but just signed on formally.

Hair loss with herceptin.
 

I am taking herceptin only, weekly. The nails are slow to grow and also split easily.

I used to have very thick hair. After chemo I got about half of it back. Now with "late" herceptin, the hair seems to be thinning even more. We have drainage problems in our shower, so we keep a screen in there to catch the hair. After starting herceptin, we noticed more hair collecting in the drain.

At my last herceptin treatment (#29) I asked the nurse if she has seen hair loss in other herceptin only patients. She said not usually; hair loss is uncommon.

I wonder though.....some patients don't say much unless they are questioned; maybe it happens but doesn't get documented.

Barb

hair & nails
 

Ciao! My natural hair is light brown / dark blond, with copper highlights and I'm on my 2nd experience with cancer.
I had 6 taxotere and have had yesterday Feb. 8 my 9th herceptin (I go every three weeks). The hair fell after the first tax/her treatment, right after three weeks. Now it's growing back, a bit slowly actually, but it's growing. People who notice say so ;o) eyebrows, though, it's a different story.
The first time (4 years ago -28yo) my eyebrows AND eyelashes fell almost completely, and my nails and toenails got black stripes - I sometimes wore a red hair wig, usually a turban, and always used a very light eyebrows pencil and colored nailpolish, which I changed frequently, and managed to get off with it that way. This time (34yo), my eyelashes stayed on, but eyebrows fell almost immediately and are not back yet - sometimes I wonder if they will ever be. I have worn a short, brunette wig, alternating with my beloved turbans, and always a medium brown eyebr. pencil. Nails are a sore point, since they have split and detached almost to their half, and they hurt a lot. And on my left thumbnail, a nice black stripe... I sometimes wear fake nails, preglued, in different lenghts and shape, and feel ok
Hope to have helped somehow.
lots of love, and good luck, Attilash

Thanks to all for the input! When I saw the thread today when checking the board, it took me a moment to realize I was looking at my own posting!! How's that for slow? ;-)

My eyebrows and eyelashes have grown back in (not as thick as pre-Herceptin) since I last posted. Herceptin seems to really slow the hair growth process to the extent that the hairs that fall out are not replaced as quickly as pre-treatment.

Now on to the symptoms of early menopause. Does the fun ever stop?

My thoughts and prayers go out to all of you, caregivers and survivors alike.

Denise

My expericne with Herceptin alone
 

Hi,

I have had 4 tx of herceptin alone, I get it every 3 weeks in a 30 minute drip. I have had no side effects at all. My hair on my head is growing in very nice, no curls though, my eyebrows had to be waxed a few weeks ago, and my lashes continue to grow.

I pray that this stays the same as I have 8 more.

I hope you all well.
Randi

My hair came back in very curly, darker and with streaks of gray where before I only had a few grey hairs. Even as it got longer the curls got tighter onto my head. So I went and had it cut as low as I could to cut off the curls which were very unmanageable. Whenever it starts to get a little length to it the curls come back. My fingernails also split, peel and break off. I look like I've been gardening. Keeping a hardening polish on them helps. The menopause symptoms are fun too. Hot flashes especially.

Cathy, I had AC and my hair came in gray and curly! Don't know where that gray came from! ;) I loved the curls and kept it short. Everyone loved the grey/white color of my hair and I have not colored it since. The curls are gone though! I'd give anything to have them back. It was wash and wear and I looked like a new person. Skinny, too!

Hi Buibbles Mom, I have been on weekly Herceptin since 2001 and my hair seemed ok till I got a perm after all these years and it got brittle and broke off ugg still dealing with that...answer no more perms) but my nails are thin split and very short... I stopped Herceptin for 3 months in December last year.. and I got beautiful nails??? go figure.. Back on and the nails went back to being split, short and thin... I have tried nail food lol from Sally's all kinds of strengthening polishes.. non worked so I just live with it... and use gloves when cleaning.. Hugs Marilyn

Hi Susan, Yes...I have had sinsus problems after each herceptin infusion...and super BAD headaches. And I am one to not have many headaches at all. So this has been new to me. They are killer headaches. I take advil and it helps a little bit...tylenol does nothing for them. But I sure get a crusty, and bloody nose after the herceptin...not sure why...but I do know it IS the herceptin.

I lost my eyelashes and all but about three hairs of my eyebrows while on A/C. I'm pretty much hairless at this point in time. Justed started taxatore Wednesday (will have 4 rounds) then surgery. Don't have any more hair to loose.

I lost all hair with the chemo's....including eyelashes and eyebrows. Now for the first time I have curly, still thick (as before) hair but very thin eyebrows and lashes from the herceptin. I use eyebrow pencil and think I look pretty good for it....not attractive but normal sort of looking...lol. I enjoy not having to shave my legs or under my arms....well maybe twice a year at most. I have a very runny nose from the herceptin as well but nothing else that is really a problem....well except for the low MUGA score of 48. I am taking Magnesium, CoQ10, Vit A and D in fish oil and am looking for some Omega 3 fish oil capsules to take for the heart. Will find out in a couple of weeks if this is working. Also gave up taking calcium and Vit b. Oh yes, my nails are a mess!! short, break all the time and split and tear as soon as they start to lengthen at all. I just keep them cut short and try to forget what it was like to have nice nails.

Cathya

to GUEST
 

I will let you know for sure in a couple of days about the details of infusing Herceptin--going tomorrow 3/20/'06-Mon.
Kat

What tests for the return of the Big"C"& my RX
 

I am 51 yrs. old and have had a partial Masc.,portacath.put in,4 Adrimy/Cytoxin followed by 12 weekly Taxos,(6Taxols with herceptin upon approval of drug followed by 6 more wkly alone to make 12 herceptins weekly). Now, I am taking 8mg.IV(60 min) every 3 wks. with an injection of benadryl and 2 tylenols beforehand. Fingernails are brittle and some acheyness(sp?), but better than the alternative. WHO OUT THERE KNOWS THE Survival rate statistics of taking/not taking the herceptin. and How long have you all been on it??? MY ONC. has been in the USA for only 7 yrs. and will never give me detailed info.-just says "Don't worry--You are fine", even when asking about factors on blood tests,etc I had my surgery in Apr.'05 and started Chemo. in May '05,then rad. and now herceptin. WHAT TESTS, and how often do you check to see if the Big "C' has returned???? RSVP KAT asap

to Catlin et al
 

I haven't had reconstruction yet, but I do notice that my RIBS have a burning ache---hard to describe--and I do NOT want anything tight on my Ankles,especially-- well, just about all over my body. I also have a hard time sleeping. I canNOT get anything done as far as organinzing or housework--I was not good before chemo., but I am ALOT WORSE now. MY feet and joints are achy(sp?) I have to take a pain pill to go to exercise, but I think the exercise helps me. I am 51 yrs old and have always been an avid walker and exerciser, even aerobics. ARE THESE SYMPTOMS LIKE ANYONE HERE ???
I am having a tough time now because we have sold our house of 20 yrs with 3 now-halfway-grown 22,24,26 yr.old boys, and have to empty the place by tomorrow, which is when I also take Herceptin again----HELP!!!! Men do not want to hear complaints, you know----glad you are here--KAT katcdale@yahoo.com

Kat, I did all my chemo first also since my cancer was so aggressive. This is the time you need to let your family know you are not like you were before cancer and need to stop and rest. You are still Healing! Do things like pack the box not carry it.. A hard time sleeping seems to be one of the things we "enjoy after chemo along with achyness. The pain near the rib cage may be still from stretching the muscles during surgery, and nerve endings coming back after the surgery.. I have had to have some Physical therapy (I was lucky and found a therapist who works with breast cancer survivors) Also a great help is messaging that area any cream will do it is the message that helps!
Organizing goes out the window along with short term memory... but after the chemo some of that does get better lol... It took me 5 years to be able to really get hepped up and dig out the corners in my house so .. Don't be so hard on yourself... give it time girl! You have been through alot! Your body has taken a BIG HIT.. Do keep on with the exercise... but don't push you don't have to touch the floor, at first, just touch your knees... I have changed from jumping stuff like aerobics to walking Chi Gong and Healing Tae Chi... there is also healing yoga lots of stretches to keep us limber and Chi Gong for Health is a great aerobic exercise..I lost my sense of ballance and this helped me alot in getting it better. With Chi Gong you actually can sweat.. lol. The More you put into it.. the more you get out of it...This exercise has been a lifesaver for me... and walking is at your own pace and amt... you will feel better continuing but be easer on your body taking a pain pill to exercise is not good... pace yourself give yourself time to heal.. and you will build back up... I know ... everytime I overdid.. I would pay for it the next week or the next two days... Get some loose sweats for awhile and enjoy being loose.. you do get back to the good looking stuff again.. or if you have to, put it on only for a short time. I have been working with cancer people since my cancer dx, since I am a nurse I do alot of patient advocacy and teaching. So I have seen alot. Especially with Herceptin girls.. We actually developed a club for just Herceptin ... and they call us the "Ya Ya's" at chemo.. A good support group or friend to talk to is really important.. you say things you may not tell others when you share the same thing. I am 57 and still here.. lots of things have happened but I am living loving and laughing... and always allow miracles! Hugs and best of luck in the move.. your family will understand.. they care and have gone through lots of fear for you... don't be afraid to tell them how you are doing, and if you need help... they have been waiting to be needed through this... this gives them a feeling of being helpful too in your recovery... Ps write anytime, love Marilyn

Kat,

I was diagnosed Stage IIB 6 years ago. ACT. Herceptin was discussed, but we decided against it at that time. I had a recurrence 6 months ago. Started Navelbine and Herceptin.

My dr. watched me like a hawk during those 5 years. Dr. visits every 3 months with tumor markers tests. Mammogram on the remaining breast every 6 months and scans on a yearly basis.

On a monthly basis, I did self-exams (I found the original tumor). Checking remaining breast and lymph nodes.

Survival rates are very difficult to determine and not very useful (in my opinion). Because Herceptin is so very new, they are really just now learning how to best use it. It is very frustrating that we are just now creating the statistics, but it is wonderful to realize that we have the option to create new statistics.

We are not only helping ourselves, we are also helping those who are coming up behind us.

Your family needs to understand that you need time to heal. I think that this is so hard on our families, that it helps them to minimize our need for healing. Especially when we continue to exercise and trying to carry on normal lives. It's important to try to be normal; but also important to take the time you need.

Hang in there.
Susan

katcdale@yahoo.com
 

Marily,
You have really helped me. I just let my boys move everything. It was too tough on me physically and emotionally (packing up a house full of 20 yr.memories). They got rid of most things that I may have kept. They wouldn't let me even go to the house at first. Now, we are living in my deceased inlaws older home with too much clutter, & NOT enough bedrs. My husband is the head pharmacist at the local hospital. My oldest son has garduated from college and is the Director of Finance(pinched every cent)at the hosp.). I have one son in Law School(spends my every cent), and one who thinks he finally knows what he has to do & in college(he started composing classical music about 2 yrs. ago, altho he cannot read nor write it--it is beautiful and very complex!!) The bad thing is that my husband sleeps in one bedr.& I in another. I go to bed too late and we each have a favorite dog.( excuse??,but).. He treats me like his father did his mother--they slept in separate bedr.,-- I keep telling him I'm not HER--I have felt so distant from him and other people. That's why finding you et al. HERE means so much to me. I taught highschool and had degrees in French, English, Math, and Sp.Ed. The public schools here are pretty bad--gangs, fights, ethnic fights,etc... Now, well, I'm not teaching and just trying to did out of this mess and trying to survive. Has your cancer come back?? Are you still working?? Kat in the delta

katcdale@yahoo.com
 

Susan2, How do you feel?? Where are you in your treatments? Where did your cancer reappear?? How old are you?? Do you have a family?? How have they reacted to a 2nd bout?? The onc.nurse at my clinic said that the drugs you are getting with the 2nd appearance is the usual. They only approved people with 1st x occurr. this past yr. Herceptin was only used to treat reoccurring cancer until now. Glad you can get it now--I have heard of people on their last end, completely getting better because of HERCEPTIN. I wish I had bought alot of STOCK in the company last yr. How's the weather is CA?? Kat in the delta p.s. Morgan Freeman has 2 resturants here and I bought the boys tickets to hear and see Willie Nelson at one Sun.26th. Willie has ties to Morgan and an atty. here to start a new fuel and fuel co. 2 tickets were auctioned yesterday for $300 each---my boys may need to sell/raise $ for the ACS. Kat in the delta

katcdale@yahoo.com