Herceptin and Side Effects

[BubblesMom]

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]

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]

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]

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]

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]

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.

[BubblesMom]

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 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]

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]

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

[katcdale@yahoo.com]

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

[katcdale@yahoo.com]

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

[dskdrive]

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+.

[Joan]

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]

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

[Joan]

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

[catlin]

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.

[Barbara2]

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

[katcdale@yahoo.com]

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

[Marily]

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