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

[cath52]

I had a year of herceptin after 4 treatments of a/c. Have been off meds since July 07. Haven't really noticed my eyelashes or brows being any different but my finger and toe nails are a mess. Both big toenails are black and fingernails have ridges in them and continue to split and breakoff. Have to keep them filed down. Also my heels are dry and spliting. My hair has come back in with areas of it being real coarse. My nose still runs like sugar water. Sinuses were a mess for a while but I haven't had them bother me lately.

[TriciaK]

This thread has been interesting and surprising to me---I didn't realize herceptin could cause problems as well as chemo. Since my third BC mets (and first her2) were discovered in 2004, this has been my experience: I only had six months of chemo (navelbine) along with herceptin, and then just herceptin and femara, about 15 months all together until I was taken off herceptin because of a very low ejection fraction. I have been on femara for 3 years now, nothing else for cancer, but am also on several heart meds. My once thick wavy easy-to-manage hair is now thinner, dry, frizzy, breaks easily and is totally unmanageable, although I didn't lose much of it. In fact it is so unmanageable that I just bought a wig for special occasions, because even when I have my hair "done", it won't last overnight! The picture on my posts is about 2 years old now, and that is how my hair used to look! My always long eyelashes got thinner but have grown back fairly well now;however, my left eyebrow never did grow back and the right one is almost non-existant, so I have to draw them on. And I now have extremely brittle fingernails with vertical grooves and ridges. They break constantly no matter how short I keep them. No toenail problems so far. I kind of thought all this was just from getting older, but I see from your posts that I'm not the only one having these problems. I am sure that a lot of the worst side effects, these we've been looking at and others we have mentioned earlier, are also caused and aggravated by lack of estrogen---in my case, 5 years on tamoxifen and 3 years on femara. (And all after menopause!) Destroying all our estrogen may help keep BC at bay, but at what a price of femininity! I know all these things may be somewhat trivial compared to all the other horrors of BC, but I hope someone will give us some ideas of what, if anything, can be done to improve the situation. In the meantime I guess all we can do is keep a sense of humor and share our ups and downs with each other! I learn so much from all of you, and it helps so much to know I am not the only one going through these frustrations! I am so grateful for this website which allows us to "be there" for each other through thick and thin hair and eyebrows! Hugs, Tricia

[StephN]

Goodness - the chick testing is heartrenching. Hope the researchers have what they need now.

1)were you ever on herceptin alone - YES, almost 6.5 years now

2)how long after chemo were you on herceptin - got Herceptin for mets and stayed on it ever since.

3)was anyone on herceptin without chemo - Began herceptin WITH Taxol and Navelbine for mets, then continued the Herceptin

4)were you also on antihormonals - NO, I am hormone neg/neg

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

Had a lot of chemo and went "manekin" twice. Hair grew back pretty normal on my head, less on my legs and underarms, and lashes and brows are not the same. Lashes are thinner and shorter and left brow is missing back half and they are thinner. Only stopped Herceptin for 3 months last year and nothing changed. Back on indefinitely.

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?

Some cracking of mainly index fingers in the winter or when gardening a lot, heels and toes OK, only have right great toe nail that took forever to grow back and still lifts off its bed. Fingernails are more brittle at times, then grow in OK. These things are all better on Herceptin alone than on chemo or chemo/Herceptin.

[Leslie304]

Has anyone experienced the facial rash asssociated with Tykerb/Xeloda and if so is there anything that can be done to help clear it? Topical Cream??

[Henny]

I was on Herceptin alone for 8 months after A/C (2 months) and then T/H (2 months). Hormone negative
I had splitting nails and cracked thumbs near the nail the whole time I was on Herceptin. My eyelashes and eyebrows would all fall out and then grow in again also during that time.
Now that I've been off H for over 2 years I still have very thin eyebrows, tiny eyelashes, split nails and ocassionally split thumbs. Also have a numb tongue (totally strange but doesn't stop me from eating-too bad)

[Barbara H.]

Herceptin has not been much of an issue for me. I have been on both Herceptin and Tykerb since October 2009. The Tykerb has caused cuts on my finders similar to paper cuts. My nails are thin and break. If I do not moisturize my feet, the heels crack. I had an infected toenail for about 6 months. It is now almost back to normal. My hair has been fine for the most part, but I currently seem to be shedding more than usual. Perhaps it is a seasonal issue. I sure would like some advice to help be deal with the cuts on the fingers. I wear gloves, and moisturize my hands, but I find it very difficult to keep on top of it. I work in a classroom and have to wash my hands more than when I am at home.
Barbara H.

[Joanna J]

I took Herceptin for a yr. I noticed fingernails flaked off in layers,and had to have one fingernail( ingrown down in the flesh surgically removed on the sides) I have ridges & raised up lines,a couple fingernails look yellowish.fingernails seem thinner now,no hormonals.

[rinaina]

One year of herceptin following chemo and radiation. Still have problem nails, lashes and brows almost 5 years later.

[Mary L]

Happy Christmas Eve Day!!! I have been off Herceptin for 3 years this past Oct 2010. My nails have really improved in fact they grow too fast. My eyebrows grew back but are thin. My hair is baby fine and it had been thick and had alot of body. I still have and probably will always have bad neuropathy in hands and feet. But, we are still here!!! We can deal with it. Mary L

[Nancy L]

1)were you ever on herceptin alone--yes, from Mar 2005-Feb 2009.

2)I have been on herceptin continuously since Dec 2004

3)was anyone on herceptin without chemo(see #1)

4)were you also on antihormonals-no

5) a)did you notice any problems with you eyebrows ?yes--very thin
b) eyelashes?--yes, especially lower lashes on left side where I had BC
c) did they preceed herceptin--I lost my eyebrows and eyelashes during AC
d)did they get better/worse on herceptin---grew back after chemo but not they way they used to be. Plus I am one of the unlucky 1% of Taxotere patients who never got my hair back.
e) did they get better after herceptin stopped? have never been off Herceptin

6)a)did you have cracking of your finger tips, heels, toes, ingrown toenails--yes to all of these. Plus my fingernails split and peel. When I was on Taxotere, all of my fingernails broke off about halfway down and both of my big toenails feel off. They grew back after chemo but have never been the same and have gotten worse on Tykerb.

b)similarly did they preceed herceptin, no
c)did they get better/worse on herceptin, worse
d)did they get better after herceptin stopped? never 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)

No antihormonals. Been on Herceptin/Tykerb combo since 2/2009.

Lani, hope this info helps. If the researcher needs more info or nail samples, I would be happy to provide. Most oncs see these as nuisance side effects, but they do affect our quality of life. It is nice to see someone looking at why this might be happening.

[DiDi70]

Began Herceptin in conjunction with first Taxotere last February. Hair had already fallen out 3 months prior due to Adriamycin/Cyclophosphamide therapy.

Finished Taxotere in May. Remain on Herceptin every 3 weeks until Feb. 22nd, 2011.

These are the issues/symptoms I have at present:

Hair is growing back very slowly. It is now very fine, like baby hair. Prior to chemo and Herceptin it was very thick and very coarse i.e. each strand was very thick and strong. It used to grow very, very quickly.

Hair at my "widow's peak" or bang area is the slowest to grow and is still very sparse and very fine.

My eyebrows are growing back in the original shape, but are thinner. They thin further in the week following each Herceptin treatment, grow in a bit in week 2 and 3 after treatment and then thin out again with next treatment.

My eyelashes are finer and sparser than prior to treatment.

My finger tips are dry and wrinkled looking. One fingertip split open in the cold air the other day. This has never happened to me before and didn't happen last winter while on Adriamycin and Cyclophosphamide.

My heels are very dry and develop several layers of dry skin over a period of a few days if I don't keep up with the heel file and thick moisturizer.

My eyes are dry - I wake up with the sensation that my eyelids are stuck to my eyeballs. I use drops each day and night to help with this.

My nose drips a lot, but also, in the week post-Herceptin treatment, my nostril near the tip of my nose splits. It actually looks like I have a cut at the tip of my nose. This has happened every single time I have had a Herceptin infusion and I just had Herceptin # 15 on Tuesday. Nostril has split.

My fingernails are very soft, pliable for the most part, but break off with any kind of slight impact. I keep my nails very short and wear rubber gloves when doing housework. Nails were super-stong prior to treatment. My toenails are fine.

Here's what may seem to be a very odd side-effect, one that my Physiotherapist and I note in the week post-Herceptin infusion: My affected arm (mastectomy and 30 nodes removed) becomes very, very stiff and I develop adhesions which are actually painful. My Physiotherapist works on stretching out my arm and improvement is gained, then I have Herceptin and we are back at square one again. Very odd and very frustrating.

Weight gain. Could be from menopause.

Gums: Seeing some gum receding since May despite good oral hygiene and dental care.

Joints: All very stiff, especially in the morning. Some pain. Notice that my knuckles "crack"easily as does my wrists, knees and ankles. Can actually hear my knees crackle and pop when going up stairs.

Hoping that all of these issues resolve when Herceptin is finished.

[Mary L]

Hi Didi, I read your post and I had to respond. I was on Herceptin for almost 5 years. I had the dry, red eyes, brittle nails, neuropathy in feet and hands [feet worse]. my hair is now baby fine and I can't do anything with it. It was thick and had alot of body. I am trying to get ready to go to 2 Christmas Eve parties and my hair is a mess. I am just about ready to start wearing a wig. Now that makes me mad!!! I am 3 years off of Herceptin and the side effects I still have are, my hair, my neuropathy, my face turning red on and off during the day,[I have no idea why but it happens] and I have a severe problem with chemo fog. Chemo is made of all kinds of chemicals and we have to except the fact that there will be side effects. I wouldn't be here today 7 years after being diagnosed with IBC stage IIIB. I am happy to be here to celebrate Christmas and I will deal with the side effects I have. Best Wishes for a Merry Christmas. Mary L

[sarah]

Hello Lani, and a thought for R.B. also:
1)were you ever on herceptin alone - Yes for 5 1/2 years

2)how long after chemo were you on herceptin - Had Taxol and Herceptin for 6 months then Herceptin alone - with Femara for 5 1/2 years

3)was anyone on herceptin without chemo - Only after having Taxol with herceptin first see answer 1&2

4)were you also on antihormonals - Yes I took AIs, Femara for the same time I had Herceptin alone -- 5 1/2 years

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

Ok - lost head hair, legs, etc during Taxol/Herceptin. after stopped Taxol, head hair grew back thicker but still hardly any hair anywhere else, except some eye lashes but basically very thin or no eyebrows on side.
During chemo, heavy skin problems, toenails loose and discolored, extremely dry skin, skin rashes, cataracts started (but I'm old so....), broken fingernails, fatigue
on Herceptin and Femara: still no hair or little, brittle nails particularly on hands, extremely dry skin, itchy rashes.

6) Off Herceptin and Femara for 4 months, no changes - same problems

Note for Lani: I stopped all supplements during chemo but started them after I stopped chemo.
Among the supplements I take are Tumeric/Curcurmin and Omega 3 - recently a friend who takes these (has Her2 bc) developed an itchy bruise like patch on her arm, her GP, who's an internist said it was due to these supplements and I happened to have dinner with him recently and he re-confirmed that these supplements can cause rashes - often itchy pinprick size spots which is exactly what I have. I thought it was a sun allergy or to plants in my garden and cover up totally outside but - it's now cold here and my arms are rarely exposed and it still persists.

Hope that covers all of your questions.

Thank you Lani for keeping us so informed and researching these things and understanding them!
health and happiness
love sarah

[MJo]

It's been 5 years, but as I remember

1)were you ever on herceptin alone - After chemo and radiation ended, I was on Herceptin alone for for about three months.

2)how long after chemo were you on herceptin - I think I got Herceptin and Taxol at the same time

3)was anyone on herceptin without chemo - No. I had chemo

4)were you also on antihormonals - Yes. Started on Arimidex during radiation

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

Lost the hair on my head with A/C. Then, with Taxol, my face and the rest of my body went bald. For me, losing eyebrows and lashes was worse than losing my head hair. My hair grew back quickly after Taxol ended, even while I was geting Herceptin.

My fingernails turned black.

6. Switched to Femara after two years on Arimidex. Fortunately I have a thick head of hair, because I definitely think that it falls out a lot more than in the past and I think it's the Aromatase Inhibitors.

[fauxgypsy]

Peeling nails on hands and feet. Heels cracked. I had about a year of Herceptin (after 6 mos. of Taxol and Carboplatin, along with Herceptin) and during that time I was on Tamoxifen, was switched to Femara, then to Arimidex (side effects were the reason for the changes). My eyelashes and eyebrows are not as thhick as they were but I thought it might be getting older.

[1rarebird]

I can attest that some of the side effects being reported on this thread occur in males too. My TCH regimen left me with fragile nails (they are now ridged and split at just the slightest provocation), and my hair came back in at only about half its pre-chemo and Herceptin density and thickness . The soles of my feet are still are numb and tingle and my bones were weakened as well. I won't get specific about what the Tamoxifen has done to me; suffice to say it has seriously affected quality of life.

But despite all of this, I am thankful that my Her2 positive breast cancer was and is being treated in 2009, 2010 and 2011. It wasn't all that long ago that the treatments available were so much less effective than what we have today--side effects not withstanding.

bird

[chicagoetc]

Only to add...Herceptin left me with thin/vulnerable fingernails that seems to crack at any insult and really don't grow back where this happens. My hair is many times thinner and, something I think, keep getting thinner. I have toenail problems which seem to be trying resolve themselves but suspect these are from Taxol.

On the positive side: I am glad to have treatment and be functioning as well as I am.

Melanie

[Mel3]

I am currently receiving daily radiation and Herceptin every three weeks. My fingers are dry and cracked, nails are brittle. My hair is slowly growing in but not enough to comment about. My nose drips when I get tired or stressed, so then I take a break for a few minutes to recover. I've had a few sinus headaches and my right ear makes a strange sound that's like a stretched rubber band that has been touched, if that makes any sense. I can live with this and am thankful for Herceptin.

[Emelie B]

This is my second time on Herceptin and I have now been on it for 11 mos. The first time was with Taxotere and this most recent time was with Taxol. After my first round with Herceptin, all my eyebrows grew back, my lashes came back, my nails finally got strong and I did not have any problems with my toenails.

This time round I have gotten my hair back slowly ,and it is as thick as ever, just more coarse. A lot more gray hair.
My eyelashes keep falling out and my eyebrow on the right side is non-existent in the middle of the brow. Thank God for brow pencil.
My fingers crack all the time.
My nails split badly so I keep them trimmed as short as possible.
My toenails peel in the middle of the nail and come off.
I also have more fatigue than last time, but then again, I am 55 now so that could be the reason.
Hope this helps,
Emelie

[Laurel]

Eyelashes were thin and continuously falling out while on H. I could not grow my nails to save my soul while on it. After a few months post Vit H everything returned to normal.