Chime in please! Has herceptin (or tykerb)affected your eyebrows/lashes,fingers/toes/

[Lani]

heels?

heard two fascinating lectures today--one by the man who discovered breast cancer stem cells, Dr. Michael Clarke, the other by a researcher, Howard Chang. who is discovering how the cells in the body know where they are and what they should turn into.

There were disturbing slides of chick embryos whose" skin" from the lower limb buds during development was exchanged with that from the upper limbs and vice versa--with the chicks that developed having scales on their wings and feathers on their legs.

Dr. Chang has found groups of genes which seem to do this and epigenetic ways(by altering the way the chromatin--interweaving of chromosomes--is "read" by blocking the ability of the "reader" to get to the gene by having something sit on it and block it (think of an old casette tape with honey dripped on it intermittently) in which the cells which end up on the back vs front, close to the trunk vs fingertips and toes, etc seem to know what to become.

I remembered in my thread regarding side effects of Herceptin several mentioned that they lost the "outside" arc of their eyebrows and had much thinner, shorter eyelashes as well as cracking of the fingertips, heels and toe problems. I also remember that even those on Tykerb alone (xeloda tends to cause hand-foot syndrome it seems) have developed problems with the tips of their toes and toenails.

The genes he has identified don't seem to control things on the head and/or few people are willing to have a biopsy done voluntarily on their fact, so he remains perplexed about how facial features and hair niceties develop and are maintained.

I would appreciate if all would chime in regarding:

1)were you ever on herceptin alone

2)how long after chemo were you on herceptin

3)was anyone on herceptin without chemo

4)were you also on antihormonals

5) a)did you notice any problems with you eyebrows ?b) eyelashes?c) did they preceed herceptin, d)did they get better/worse on herceptin.e) did they get better after herceptin stopped?

6)a)did you have cracking of your finger tips, heels, toes, ingrown toenails-- b)similarly did they preceed herceptin, c)did they get better/worse on herceptin, d)did they get better after herceptin stopped?

7)Similarly for those on tykerb alone (or on teach and pretty sure they are not getting the placebo because of rash, etc)--are you having eyebrow, eyelash, toe, finger, heel issues and how long has it been since you had chemo (and whether you are on antihormonals as well)

There have been many popular threads here on hair and nail issues and perhaps we could help provide this researcher some direction regarding where to look in his research without his having to put scales on more chicks' wings or feathers or more chicks' legs!

Anybody?

[Mary Anne in TX]

During all of the chemo I took I had no heel problems. Since being just on herceptin my heels peel off in chunks. My lashes are much shorter and thinner as are my eyebrows. My fingers aren't very peely (is that a word?), but my nails bend. I always had super healthy nails, so this is really different. The nail thing began while on chemo and herceptin. The heel thing must just be a herceptin thing for me.

[Mary Jo]

Well, I was on herceptin with taxol and also on herceptin alone. I started herceptin with taxol. When my 4 dose dense taxol treatments ended on Nov. 30, 2005 I continued with the herceptin, alone, every 3 weeks, until Oct.11, 2006. I was not on any antihormonals as I am hormone receptor negative.

I did not notice any eyebrow, eyelash, hair, cracking skin issues on herceptin. Only some weight gain which dropped off nicely when herceptin was finished. My eyelashes and eyebrows are much thinner since the chemo AND herceptin. But, that started with the chemo so can't really blame on herceptin. I wouldn't say they got worse when on herceptin alone.

So, there are my answers. Next.

Mary Jo

[Julie2]

Lani,

I don't have any of the symptoms you described while on Herceptin except the runny nose.

Julie

[Margerie]

Lani-

I was on herceptin alone for 21 months. During that time I experienced thinner eyebrows, eyelashes normal, brittle finger and toenails, cracking fingertips. I have also been on Arimidex for the same time period. I just finished herceptin 4 weeks ago, so hoping things return more to normal. (I must say my chief complaint is insomnia- not sure if Herceptin/Arimidex or both.)

[Becky]

I started Herceptin 4 months after my last Taxol (4 DD AC then 4 DD Taxol). Started Arimidex 3 months after Herceptin. I did not notice much except a runny nose until after Arimidex was started. Then my finger and toe nails began to thin and split. My toes did not recover as nicely but I began running again and have "runner's toes" BUT I did not get the cracked toenails (where you lose half the nail) and black toenails prior to cancer. However, I still have a bit of neuropathy left in my toes from Taxol and I think I don't feel as much as I should (and have since purchased new running shoes with a wider toe bed). I attributed the thin nails to Arimidex (or perhaps the combo) as my fingernails are still thinner than before cancer but not as thin as on the combo (but I am also almost 4 yrs older now and had ooph to be fully thrown into menopause).

[Karen W]

Hi lani,

I started Herceptin two weeks after I completed DD AC & T... three months after the completion of my DD chemo I started Aromasin.

During chemo, I am not too sure what I suffered from because everything seemed wrong. But I can tell you that during Herceptin, I had all kinds of sinus, ear and balance problems. I also suffered from ocular migraines which caused pain and blurred vision. I completed Herceptin in August of '06 and will continue on Aromasin for 3 more years.

The residual problems I am experiencing now (from who knows what) are thin cracked nails, toe nail problems, cracked skin by my fingers, thin eyebrows and short thin eyelashes. Also, my hair (bangs) did not grow in very well. My hair is extremely thin in the front.

Karen

[tousled1]

I had neoadjunct chemo and after my surgery started Herceptin. It was approximately 2 months after chemo that I started Herceptin. I was on Herceptin only for the year and noticed that my fingernails would crack and peel, I lost a toenail, my finger tips were always cracked no matter how much lotion I used and I was never on hormonals.

[hutchibk]

I was on Herceptin alone for 14 months post chemo, and I did not have the side effects you are talking about, that I know of. My eyebrows have always been naturally light and almost non-existent, so I wouldn't really know if I lost them ends of them.

I have not been on Tykerb alone, but I have been on Tykerb/Xeloda for the last 8 months. I do have really bad fingernail and toenail issues. My nails are shot, shredded, thin eggshells, on both my fingers and toes. Toenails break easily and are like broken bottles unless I clip or file them every other day or so. My fingernails barely grow at all and break instantly if they get any length on them. It seems that I don't have any classic hand/foot syndrome from the Xeloda. I do have an occasional open crack on my left heel if I don't keep my feet well moisturized.

[Jean]

After I completed chemo (TC) I experienced neuropathy in toes.
It has improved, but I still some neuropathy.
Did have cracked finger tips and thin nails while on herceptin and Femara for the remaining year. After I completed Herceptin the skin on the heels
of my feet would peel in thick layers. This lasted for a few weeks.
Eyebrows have not fully grown back in the arch area and eyelashes
are thin and short. The hair on my head is much finer.

I remain on Femara.

Jean

[R.B.]

Omega 3s.

One of my repeated questions is what impact does Herceptin have on the fat pathways?

A trial suggested one of its legs does work through the fats pathways but more than that I do not know. Does Herceptin block or intervene in the body's ability to make DHA from the mother fat?

If it does then the mother omega three would not get converted and DHA and EPA would only be available from food sources, primarily oily fish and fish oil.

Cracked skin is on heel or finder tips, soft nails are signs of fatty acid imbalance according to a book called Smart Fats.

Please discuss dietary change with your doctor.

[dhealey]

I took taxol with half dose of herceptin for 2 months then herceptin alone, was on arimidex, then aromasin, (stopped these due to bad side effects) now just starting tamoxifen, just ended herceptin this week. During this time my eyelashes have fallen out 4 times ( grow back and then fall out again) My eyebrows are now very thin and the skin around my fingers are cracked and peeling, but I am a nurse and wash my hands alot. Nails are not soft but have horizontal ridges on them. Hoping all this subsides soon as I am only on tamoxifen now.

[mts]

I started Herceptin after being off of Taxol 3 months. Stayed on the Herceptin 1 yr.
Because I was in "chemopause" I figured that the crackling heels was due to lack of estrogen.... but when that got better when my period returned 2 yrs later.
I also figured the lost little bit of arch in my brows was from the chemo and my new short length of lashes too. I had very thick lashes and brows before chemo and well, now they are skimpy... My nails did crack/split at the tips but that too has gotten better (although not as healthy looking as before cnacer).
I did not take anti-hormonals.

maria

[DonnaD]

I started Herceptin with Taxol in Jan. of 07. All hair was gone on my body, I think from Taxol and Nuelasta. I finished Taxol in March and my hair started growing slowly. I am not on hormones.

I finished Herceptin in Dec, a one year treatment. My eyelashes are very slow to grow and are very thin. My eyebrows are also the same except as you mentioned from the highest part of the arch back they are not there. Nails are paper thin. I did loose one toenail in Jan of 07 but that happened when on A/C.

Let us know what you find out.

[Gerri]

I started weekly Herceptin with my second dose of Taxol. After Taxol was done I continuted on Herceptin every three weeks until March 07. I am currently taking Tamoxifen.

I lost my eyelashes twice while on Herceptin alone. They are now all back and reasonably thick. My eyebrows are thinner than before with my right one missing the outside arc. My fingers and heels continue to split at times. I have had to have both big toenails surgically removed on the sides because the nail bed was growing into my flesh (ouch!). My other toenails have split, fallen off and are thick and discolored. My Podiatrist just filed them all down and they are doing/looking much better.

[Kim in CA]

I was on Taxotere and Herceptin for about 8 months, and that's when my fingernail, eyelash, and brow problems began. I have been on Herceptin and Femara alone for almost 6 years, and those problems have not gotten any better. I actually think they are getting worse.

My eyebrows and lashes are very sparse and also very unruly! The hairs in my lashes and brows stick out in every different direction. This makes it very difficult to apply mascara, which is a must as I have no features without it ( I'm a redhead, think Sissy Spacek in Carrie!). Also my nails are paper thin with big ridges on both thumbs and and long lines, that look like they want to split open, on three of the fingers on my left hand.

I was contemplating stopping the Herceptin for awhile to see if it improved things, but have since chickened out after reading a post here, by Becky I think, that one shouldn't stop taking H after having had brain mets.

Luckily my toenails aren't too bad. They are thinner, but because they don't do dishes (thank goodness), or any other chores it's not an issue.

[Mgarr]

I was the opposite during Herceptin - My always dry skin was much better my heels were softer & no problems with fingernails. The only thing I can say is my eyelashes are much thinner than they were prior to treatment. I believe the other answers to your questions are in my profile.


Mar

[Becca]

While on herceptin, plus other chemos, my nails were always shredding off at the ends--had to keep them trimmed low. Now I am on tykerb with xeloda--still lots of nail problems, like cracking down the nail. Recently discomfort with both heels even though I keep them well lubricated. They feel dry with a pressure or throbbing feeling. It helps me at night to place a small pillow under my ankles to keep my heels off the mattress.

[Andrea Barnett Budin]

'95-'96 Chemo. Bald. No eyebrows or lashes. All grew back.

Sept '98 - May '99 Taxotere, Bald. No eyebrows or lashes. Nails turned black and lifted off nailbeds w/oozy stuff presenting. EVERYTHING DRY. Eyes, nose -- yet severe and constant tearing and runny nose. Fingertips, heels severely dry and burning. Neuropathy.

Overlap w/Herceptin Nov '98 -- to present. Hair did not grow back as after 1st chemo. Very thin, frail, dry, like fried hair. Receding hairline as in male pattern baldness camouflaged w/ right *do*. Eyebrows did not return. Eyelashes did not return as before -- some came back but most did not, now very sparse, shorter and not equal (meaning right and left upper and lower are not evenly distributed). Still dry eye but not as bad at all. No tearing. Still slightly runny nose. Very slight, especially when eating??!! Nails remain thin and splitting, frail. Cuticles very dry. Heels dry but not burning. One toe nail has a vertical split that grows out and returns. Toenails better than fingernails in genl.
Andi

[Diane H]

I started a year of herceptin with two months of taxotere, my eyelashes and eyebrows (which used to be exceptionally bushy) are very, very sparse. Am now on Femara, do not know if that contributes to it.