Herceptin and Side Effects

BubblesMom · 12-19-2005, 08:26 AM

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

RhondaH · 12-19-2005, 08:50 AM

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

BubblesMom · 12-19-2005, 10:02 AM

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.

Maryanne · 12-19-2005, 10:56 AM

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

Gina · 12-19-2005, 09:40 PM

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

Sheila · 12-20-2005, 06:26 AM

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.

12-20-2005, 08:48 AM

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.

snoopy · 12-20-2005, 10:08 AM

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.

MCS · 12-21-2005, 12:36 PM

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

BubblesMom · 12-24-2005, 05:10 PM

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

dskdrive · 12-26-2005, 06:17 AM

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+.

Susan · 12-26-2005, 09:30 AM

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

Cathya · 12-26-2005, 10:00 AM

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

lu ann · 12-26-2005, 10:17 AM

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.

Susan · 12-26-2005, 10:36 AM

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

Lolly · 12-26-2005, 03:31 PM

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

al from Canada · 12-26-2005, 04:15 PM

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

Lolly · 12-26-2005, 05:01 PM

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

Joan · 12-26-2005, 06:56 PM

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

Joan · 12-27-2005, 05:11 AM

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