Please post your two cents on Herceptin "side effects" real or perceived!

[Kathy S in Tokyo]

Hello Maryanne,

I should have been more specific, my neuropathy is from the Taxol and not the Herceptin :-). We added taxol to the weekly treatments (3 weeks on, one week off w/herceptin only) last June to shrink lung mets and I've managed well enough on the first 13 of 20 treatments. I notice how much better I feel on the Herceptin only weeks so I feel that the side effects are from the Taxol and not the Herceptin. The plan is to stay on Herceptin for as long as it continues to work (hopefully years and years). I haven't had any ejection factor decreases so far.

[dhealey]

I have experienced the vaginal dryness also. Onc tells it is from the chemo and now on aromasin. All of these have interfered with the production of the estrogen which causes the dryness. I have tried the k-y vaginal capsules, these helped some. There is also a product out called replense, works the same way as the k-y. Just another annoying side effect of this disease.

[sandy truett]

I was on herceptin weekly for one year. I had some upper teeth pain (sinus?) about the 11th month but it disappeared 2 months after finishing the herceptin. No weight gain or any other pains.

There's an extensive post somewhere on this board that discusses vaginal dryness with lots of good advice. You might try a search. It may have been started by Brenda or Becky, and it's worthwhile reviewing.

[rinaina]

do you have dryness anywhere else besides your vaginal area? I have extreme dry eyes and dry mouth too. my skin is also dry and never use to be. It does get better after treatment, at least for me it has, but i still have dry eyes and mouth.

[rinaina]

do you have dryness anywhere else besides your vaginal area? I have extreme dry eyes and dry mouth too. my skin is also dry and never use to be. It does get better after treatment, at least for me it has, but i still have dry eyes and mouth.

[gin-tx]

Dear Kathy,

I don't know why your onc scared you so about side effects of Herceptin. It is one of the best drugs around for treating bc. I've been on it for 15 months with no problems. Just had an Echo and am waiting on results of that. One time when I was in treatment I began to cough, the nurses came running, they had it dripping too fast and that's the reaction, slowed things down and I was fine. Yes there are some side effects, the day after treatment I'm usually wiped out, sometimes two, and I have some back pain but that is another issue with my Stage IV bc. I have no neuropathy and am fortunate in that regard.

Keep in touch and let me know of your progress.

ginkott1@aol.com

[Andrea Barnett Budin]

Hi, Kathy! As you can read I'm a 9 yr Herceptin honey. My plan is to stay on it forever, or until they come up w/the cure. I am on maintenance. Fatigue, yes. Dryness (which began w/Taxotere in '98) is rampant. Severely dry eyes. Dry nose. Dry skin (I'm Shisidio's best customer for moisutizers and cleansers). It seems gentle exfoliation gets rid of the dull dead cells. My cuticles are dry. My nails are thin, like when I was a little girl, and they peel. My hair is dry. I *used to be* in my former life, before bc -- oily. Skin and hair. Hair is thinner, thank you Taxotere. Oh, and thank you Taxotere for putting me into remission. Guess my multiple tumors got all dried up too.

I get my Vit H (thank you Dr. Dennis Slamon, Dr. Mark Pegram and Genentech's team) in a 1/2 hr infusion. Began at 2 hrs. Moved to 1 1/2 hrs, then to 1 hr, finally am good at 1/2 hr. BUT I have it mixed w/500 ccs saline vs standard protocol of 250. I find I feel less shaky and spacey that way.

All these many yrs after Taxotere I still have residual and rare pains (like deep in muscles of legs) and am a bit cloudy-headed. Maybe that's just the new me. Does chemo totally alter your DNA???

One weird anecdote I'd like to put out there and hope for responses from the panel. You ladies rock! I am a perfume addict. I generally wear Angel. I walk in the street and strangers say, Is that Angel? I love that smell. It's so clean! Waiters ask, Who is it that smells so good? Friends kiss me hello and say, You smell so good. You always smell so good. WELL -- NO MORE! At first I thought the Flea Market sold me a watered down version. I've tried a batch of perfumes. As of October '06 -- my skin no longer retains the scent of any perfume! And I really miss that. And all the nice comments I received DAILY. Every day. DOES ANYONE ELSE HAVE THIS *SIDE EFFECT*??????? What's that all about anyway???

Be well! Feel well.

With hugs,
Andi

[Kathy S in Tokyo]

Gin-tx and Andi,

Thanks for the comments. When I learned that I could have Herceptin I did the math after seeing Andi's history in her signature and was greatly encouraged. Gin-tx, I'm glad that you don't have neoropathy. Is your back pain from bone mets? I had this year's bone scan last Friday and will get results tomorrow at my pre-treatment visit with my onco. It's a little hard to type with my fingers crossed :-).

Every time anything ever hurts I jump to cancer or drug side effect conclusions when lots of stuff is probably from getting older (the goal of the treatments) and overdoing things (playing softball with the PTA or jumping on a trampoline at a park with the kids). I guess I should act my age a little more or work out more often so it isn't such a shock to the system when I do excercise.

I think my oncologist just wanted to make sure that I was really aware that some patients have reactions the first time as I was fairly laid back at the appointment when he may have expected me to be more tense about starting a new drug. I'd heard from members here and on another site about what to expect and hadn't been sitting at the edge of my seat during the appointment. I had no infusion reaction that day and have been on weekly Herceptin since March now. Dryness wasn't so noticeable in the humid summer months but now that it's cooler and more dry, I broke out the Vaseline intensive care healing skin lotion this week and do notice a big difference when I use it after bathtime.

I'm more fatigued after the lengthy Herceptin and Taxol dual treatment days than I am after the Herceptin only days. Some of the fatigue I have may be from the train commute through Tokyo and back once a week as I tend to stay around home and only go where I can cycle or walk. I'm sure that the weekly Taxol which was added to the treatments in June is a big cause of the fatigue too. I have 7 more treatments to go until I reach the magic number 20 and will return to Herceptin only in my maintenance mode. Some of the lung mets are still there, but most of them have disappeared completely thanks to the Taxol. I'm very glad that I haven't had any signs of ejection fraction decrease and that I can remain on the big H for a long time.

Having a weekly (or more if I can't get various tests scheduled on treatment days) expedition downtown has made this year fly by very fast. It seems like I just had a CT scan and it's already time for another. On the Herceptin, the results showed that the cancer was still there but in check. On the Taxol, the results have shown much shrinkage. Once I'm back on Herceptin only, I'm counting on it to keep the reduced mets in check.

Best,

[Lani]

your currently being on an antihormonal

Just be aware of the ingredients of Vaseline Intensive care lotion --including methylparaben, lecithin (often from soy) and "soy sterol"

If you are on Faslodex, which causes the Estrogen receptor to fall off all the cells in the body that it gets to (still unclear to me if that includes the brain),
these may not be a problem. If you are trying to minimize Estrogen and similar compounds (phytoestrogens) you might want to check with your oncologist if it might be. The degree to which these compounds get absorbed varies from what I understand.








Brand Information
Brand Name: Vaseline Intensive Care Lotion, Aloe & Naturals
Form: liquid
Product Category: Personal care/use >> Skin Care >> body/hand moisturizer
Customer Service No.: 800-243-5804
Date Entered: 2001-02-23
Related Items: Products with similar usage in this database



Manufacturer
Manufacturer: Chesebrough Ponds USA Co.
Div., Lever Bros. Co.
Address: 33 Benedict Place
City: Greenwich
State: CT
Zip Code: 06830
Telephone Number: 203-661-2000
Fax Number: 203-625-1602
Toll Free Number: 800-243-5804
Date Info Verified: 2007-02-07
Related Items: Products by this manufacturer



Health Effects
Enter text or highlight term...
The following information (Health Effects, Handling/Disposal, and Ingredients) is taken from the product label and/or the Material Safety Data Sheet (MSDS) prepared by the manufacturer. The National Library of Medicine does not evaluate information from the product label or the Material Safety Data Sheet.
Warning from
Product Label: Keep out reach of children. For external use only, Not to be swallowed. Avoid contact with eyes. Discontinue use if signs of irritation of rash appear. If irritation or rash persists, consult a doctor
MSDS Date: MSDS was not available, or issue date was not indicated on the MSDS.



Handling/Disposal
Handling: No information
Disposal: No information



Ingredients from MSDS/Label
Chemical CAS No / Unique ID Percent
Fragrance(s)/perfume(s) 000000-00-1
Glycerin 000056-81-5
Stearic acid 000057-11-4
Methylparaben 000099-76-3
Triethanolamine 000102-71-6
Butylene glycol 000107-88-0
Glycol stearate 000111-60-4
Glyceryl stearate 000123-94-4
Disodium EDTA 000139-33-3
Aluminum magnesium silicate 001327-43-1
FD&C (or D&C) Yellow #5 001934-21-0
FD&C Blue #1 003844-45-9
DMDM hydantoin 006440-58-0
Tocopheryl acetate 007695-91-2
Water 007732-18-5
Lavender oil 008000-28-0
Eucalyptus oil 008000-48-4
Sunflower seed oil/extract 008001-21-6
Lecithin 008002-43-5
Almond oil 008007-69-0
Orange oil 008008-57-9
Sage oil 008022-56-8
Carbomer 009003-01-4
Dimethicone 350 009006-65-9
Titanium dioxide 013463-67-7
Cetyl alcohol 036653-82-4
3-Iodo-2-propynylbutylcarbamate 055406-53-6
Aloe barbadensis/vera extract/gel 085507-69-3
Soy sterol 999999-32-6
Stearamide AMP 999999-34-6


Note: Brand names are trademarks of their respective holders.
Information is extracted from Consumer Product Information Database ©2001-2007 by DeLima Associates. All rights reserved.

Hope this helps you ask and get the best information possible. I don't have the answers.

[futurefocus]

It may be possible you are allergic to the reconstitution solution that comes with the Herceptin. It is a perservative for the drug not for you! You may want to have it reconstituted with sterile H2O. It helped me and I have and had servere problems -neorp muscular, pain etc. Hope this helps.

[futurefocus]

Andi,
You are an inspiration to me....I imagine you have gained a great deal of knowledge over the last 12 yrs. I noticed you are "borerline ER & PR"...Did they put you into menopause? My cycles returned after chemo and it scares me. In days past they couldn't determine the specificities of the disease and the chemo or the onc automatically put BC woman into menoopause...Why don't they do this today? ANy help is appreciated.

[futurefocus]

I wonder if essential oils from which perfume is made would be an alternative? It obsorbs...one can even bath in very small amounts with warm bath water ....I personally like the essentials as they are the purest of pure.

[Kathy S in Tokyo]

Hi Lani,

You're right, I'm not doing anything about the hormone side of this cancer right now. I had recurrance while on Tamoxifen so I stopped and blasted with CEF then Taxotere last year. The next attempt at hormonally controlling things was Torimifene but my new onc. decided that Zoladex to stop the menstruation that had not been stopped by chemo and daily Tamoxifen should keep the hormone hungry tumors at bay. This was based on both the original cell work and my new onc.'s lab's examination of my tumor cells. We tried this for 3 months during which the tumors in my lungs basically tripled in size and multiplied so I stopped and got ready to start Herceptin.

The Herceptin stopped the growth in its tracks and I was walking around doing well enough in maintenance mode while I had my weekly IVs. When I caught a cold in June though, my onc. decided that the cough was a symptom that could justify blasting away at the tumors to make more room in my lungs for oxygen so Taxol was added. Unlike the previous chemo regime, my periods have stopped with the Taxol.

I will ask my onc. about the Vaseline Intensive care and other Japanese brand lotions and see if he has any brands and products that he can recommend. Thanks for the advice.

Hugs,

[MAB1943]

was put on herceptin w/taxol and finished taxol in June started herceptin @ 3wk

[MAB1943]

@3 wk intervals for 90 min infusions.
here are my side effects
muga down to 53% in Sept. they want me to cont w/herceptin thru March 08
runny nose/sinus swelling/nose bleeds.
terrible knee joint and muscle pain also in hands and fingers
terrible taste in mouth
foggy brain focus ability bad memory not too bad but decreased and yes I too
stop in the middle of a sentence and forget what I was saying and can not get the proper word out at times.
neuropathy is worse at times and insomnia after treatment for few days
sluggish and very tired. urinary track irritation. and dryness. hair stopped growing back. hope it will start when I am finished my treatments.
that is all I can think of presently.
Mary

[Andrea Barnett Budin]

Did I mention that I have recently discovered, on my own, through a friend who was describing why she went off Effexor -- that my terribly spacey, shaky, foggy brain could well be NOT from my low red bld cell counts, but from Effexor! I called my onc immediately and told him I wanted to go off, knowing you need to wean off.

When my friend described her symptoms in detail, I realized that was exactly how I was feeling. I JUST READ THE POSTS SINCE 10/14 ON THIS THREAD AND AM AGHAST. WHERE HAVE I BEEN? It's like that. Whole segments of my life disappear and when I discover them, I am appalled! I kept thinking what is happening to me? Is it 9 yrs of H? Is it my HGB? Never put the Effexor in question, nor did my onc, who has heard my *complaints* for the last 5 mnths.

I was put on E to help my hot flashes. 37 1/2 mg, then 75, then still flashing up a storm, we added an addl 37 1/2 to nail it. Well, after a while I asked to go back to 75 as I was somewhere OUT THERE. I am now remembering... Slowly... So I got put on 37 1/2 for a wk. Felt better in a day. Even better after two. Now after a wk, I'm on 37 1/2 ev other day for a wk, then 37 1/2 ev 3 days for a wk. Getting better and better.

Now I'm reading these posts, and I am floored. May I say how delighted I am to hear I have been an inspiration. News to me. Also, I wanted to chime in here.

I get H ev 3 wks w/a half hr infusion. I get 500 ccs of saline vs the standard protocol of 250 ccs and I believe I do better this way. It was just the way I always got it since '98, then new pharmacist and I saw this little bag and questioned WHY, and he came out and explained. I felt dizzy and disoriented and wobbly after that infusion and now insist, through my onc, that I return to the old method. I know some do the infusion over an hr and feel better. Every one is different. Find YOUR best niche, I say!

Future -- to clarify -- I was borderline in '95 at initial dx. I was put on Tamoxifen after Adria4 and 8 CMF. When the bc recurred in '98 in my liver, I was told I was ER/PR- and to flush the Tamoxifen, it wasn't for me, could have caused the recurrence in my case. I was in peri-menopause for 6 yrs (age 40-46). My last period was '91. I was dx at age 50, post menopausal for 4 yrs.

I'm intrigued by the essential oils post, as I mentioned that for the last yr perfume does not leave any lingering scent on me as it always has. I am wondering about this annoying new thing and what it means.

Mary, I sent you a PM, but returned to the thread and see you were on Taxol, cousin of Taxotere, which I was on for 9 mnths ('98-'99). I had terrible deep muscle PAIN from the Taxotere during tx and long after. It even occurred at intervals yrs after. My onc confirmed that other patients reported the same thing, yrs after. The same was true of the foggy brain and memory thing, but worsened w/Effexor! I had neuropathy on Taxotere but not w/H. Insomnia across the board, no matter what, as friends who never had bc or chemo are experiencing at this age.

I am sluggish, but take supplements for this that help enormously. SEE *GAINING CONTROL OF YOUR LIFE* THREAD for my list and other important details, please! It's 12 yrs of gathered knowledge and experience I feel compelled to share w/all who'll listen.

Dry eyes started w/Taxotere. I'm talking severe! I had to use REFRESH+ saline drops every hr for wks before the eye pain went away (like ground glass was caught in there). Dry nose, use vaseline at night. Slightly drippy, annoying, mostly when I eat, which is inconvenient. A dab of tissue is good. During Taxotere I had to clutch a tissue every waking hr. I had to keep a ziploc in my bag to gather all the soaking wet tissues from constant tearing running down my face that tickled and drove me nuts! Pp kept thinking I was crying. So many were so kind, even the guy behind the counter at the Motor Vehicle Bureau when I moved from NY to Fla. IT'S OKAY. DON'T CRY. He felt terrible. He thought I was having an emotional reaction, like every did.

My eyebrows never grew back after Taxotere but did after Adria and CMF. My lashes hardly grew back. My hairline is pathetic, like a receding hairline. My widow's peak is gone. My thick wavy hair is gone. Replaced w/someone else's thin, bodyless excuse for hair. But it's hair, and I'm not bald, so I won't complain. Much. Still have dry skin. Use moisturizer lack crazy.

Metallic taste w/Taxotere. Not w/H. NO joint pain and no more muscle pain -- usually, which I attribute to my supplements (listed in detail in GAINING CONTROL OF YOUR LIFE) for those interested.

Nose bleeds w/Taxotere. No more w/H. Echo EF at 50 and holding. Supplements listed keep me from plummeting further I believe. Have doubled my PERFUSIA, explained in my list from nutritional oncologist. The fog is lifting going off Effexor. Who'd have thought that was the culprit?

Onc sent me for Brain MRI the other day. ALL IS GOOD, NORMAL, STABLE. That's a big relief. So -- Effexor. And I may decide to continue on 37 1/2, we'll see because it is supposed to contribute to hot flash relief and because I think I need some anti-depressant to feel more like ME, and because it weirdly has stopped my IBS (which I got from Taxotere, and has stayed w/me all these yrs till Effexor). So that's the good news and the bad. And it's really good to be back on the planet again with all your fabulous Warrior Women whom I've grown to love so.
Andi

[kat in the delta]

I just read in our local newspaper about someone at Duke Univ. doing a study ...and it mentioned also a DR. Slamon or Slaom-spelling is not correct from UCLA..CAlifornia.
Anyway, he said with a genetic test if you had the TOPELL(sp) then Herceptin could or could not help an Her2 + person... Help me look that up... It should be written in the Oct. issue of the Journal of Oncology... How Adrimycin damages the heart..then, if you add Herceptin, you are 5x's more likely to get heart damage.
I am sure that is what is wrong with me. I have never had the genetic test but I feel WE ALL NEED to TAKE it.....or we may be getting too Many chemos ..making the drug companies richer.. Insur. and Medicare(gov) would SAVE a LOT of MONEY if we all had TARGETED TREATMENT(s). My ankles swell ....and look like a diabetics or worse !!! I need to walk more to get my circulation going.. My OLD ONC.. gave me Herceptin when my Left Ventricle Output was just 47.... I just read the INsert of Herceptin..and the WARNINGS--do not give if less than 50 !! On a teleconference earlier I taped the ONC saying that 60 was really Normal....so you know if they say do NOT give HERCEPTIN if less than 50 or if it dropped 15pts score.
My New onc.. gave me a Circulating Tumor Test... and he was looking at my only 3 heart scans I had for ALL my TREATMENTS which lasted almost 2 yrs... Well, at least you don't have CANCER now... with a bit of a grin..as he was walking out..(like/ as if to say in MY words: THAT OTHER ONC.. GAVE you so much..s__t you did not have 1 CTC ..but the guy bout blew up your poor heart..)
the New onc is sending me to a good group of Heart spectialists, and I looked at that CTC test..and for now it said I had 0 circulating tumor cells in my body..... but like someone said ..you never know when it will Flare back out full force......... and I HURT --lack of circulation and some lymphedema in arm and chest..etc.. ??? Hope the Cardiologists can help kat in the delta

[kat in the delta]

I had a masc. in Apr. of 2005. and I am in PAIN.... my new Onc. said my chest was very tight...,my New Onc also asked me if I had been doing my EXERCISES,,?? ,( no one told me to do Exercise for chest..) Anyway. after going to the cardiologist to check out my Heart..&if it was O.K., he said HE was sending me for some physical therapy....
Remind your Spanish Onc. to test your Heart every 3 months while you are taking HERCEPTIN. You do NOT want it to fall below 50. (LVentricle output or Input "score"). Have you all had a genetic test ??
Anyone hear of the gene Topel or Topell...only 8% of HER2+ have it. I do not know if that is good or bad... rsvp,
kat in the delta

[myraazzopardi]

Hello Kat. Thank you for responding to my email. I am having the heart tests every three months. I will take note of your advice and see that I do not fall below 50. Reading a book by Eckhart "THE POWER OF NOW" Its not religious. It really helps girls. I also stated a couple of months back that I had no side effects from Herceptin. Well now my 7th treatment and yes knee joints bad sometimes (could have been that I was shopping in Marbella with some lovely high heels and unstead of walking like a cripple as I felt the pain and difficulty I strode proud till i got to the car and kicked them off. Will still put on my heels now and again. No other symptoms that I am noticing. I feel for all of you great girls that are suffering so many side effects. Kat let me have a private email and I will send copy of the book. The Power of Now has a simple immune booster. I use my mind as much as poss. Health to you all we will fight this and show that Her2 wont win. Love ya all.