Please post your two cents on Herceptin "side effects" real or perceived! - Page 8

tousled1 · 09-26-2007, 10:01 AM

Kathy,

I'm so encouraged to read that the Taxol/Herceptin is shrinking your lung mets. I have a personal interest as I too have lung mets and am on Taxol. I'm getting Cqrboplatin with the Taxol though. I noticed that with my first 3 treatments of Taxol that I had a burning sensation uopn urination for about 3 days after treatment. Told onc about it and she did a urine test -- everything was fine. I don't have the problem any more.

Andrea Barnett Budin · 09-26-2007, 02:06 PM

Tomara, I have some brown spots on my calves. Docs don't why, suggest because I take 81 mg aspirin a day??????? They have faded over the yrs. No pain involved. Swollen ankles. And feet. A family trait, but... I am on hydrochlorthiazide (for water retention). Do not add salt to anything. Watch salt. Yet...

ANDI

Kathy S in Tokyo · 09-26-2007, 04:17 PM

Thanks Kate, the burning sensation is what makes me think it isn't a cervical problem and the repeatedness after every Taxol day makes me think it is definitely chemo oriented. It may be mucous membranes acting up, like the insides of my nose (I get a pink tinge when I blow my nose during the same 2 or 3 post Taxol days). I continue drinking lots of water and will ask again next Tuesday when I go for my Herceptin only (yay a Taxol break!). The shorter IV time gives me time for another cardiac ultrasound to test ejection factor too. I expect it will be fine as I feel pretty good in general.

Paris · 09-26-2007, 05:27 PM

Has anyone experienced fatigue that they think is from Herceptin? I've been on it since May and I have these really bad fatigue spells. I'll be fine for a week then crash. It's like I can't get my body back in the shape it was before bc. I exercise, eat right, my scans are clean and bloodwork good. Had thyroid and vitamin d tested and all fine. I'm thinking either it's herceptin or maybe adrenal fatigue from all the stress of diagnosis and treatment. My initial chemo was 4 rounds taxotere and cytoxan, finished in April, and I did okay on it. It's driving me crazy trying to figure it out!

Jamie

Andrea Barnett Budin · 09-26-2007, 05:53 PM

The lingering effects of chemo can last up to a yr or more. The stress from the dx and tx impacts us often after the dust settles. What you are experiencing is *normal* for what you have been through, Jamie. I've been on Herceptin since '98 and fatigue is a reality for me. You can read my experience below. I have good days, and bad. I have good hrs and bad. I have peaks that last for a while, and I get suckered into thinking, I'm sailing smooth finally and then, I fall into a valley for a while. It's the new normal. But each day is a divine gift and I appreciate and revel in each one. I do my best every day. And every day, your best changes. I accept this as my new truth and I work with it, as best I can. Be good to yourself. Be patient with yourself. Sounds like you're doing everything right.

If you can, try to post your signature w/details. It helps for all of us to understand exactly where you are in the scheme of things. It doesn't matter what stage you are -- you are a Sister, welcome and accepted and supported here...
With love, Andi

MAB1943 · 09-27-2007, 03:34 PM

Anyone out there on herceptin that has neuropathy of the feet and fingers from chemo?

myraazzopardi · 09-29-2007, 08:52 AM

Hello girls. Changed hospital and have a really unsympathetic onc here Spain.
I sort of stated that prognosis for Her2 positive was not good. His answer yes that’s why we are giving you herceptin. I then asked what when the herceptin treatment is finishes. His answer “ Would have been better if you were node positive as we would have given you a tablet for five years” Anyone know what tablet and after all is it true that I am worse of being node negative. Second question. Does anyone else have discomfort with the operated breast? It’s now nearly a year and a half and I am sometimes still supporting my breast with my hands. My nipple area very sore to the touch and I am still wearing a constraint on my car seat belt so that it does not touch my breast at all.
Hate being a cry baby but hope someone can answer my questions. Love and hugs to all my hamster sisters.

tousled1 · 09-29-2007, 09:17 AM

The tablet or pill he was talking about was Tamoxifan which has nothing at all to do with node negative or positive. It has to do with whether you are estrogen/progesterone postive. I think you need to get a copy of your pathology report.

myraazzopardi · 10-01-2007, 06:44 AM

Hello Tousled. Thank you for replying. My report is in Spanish and though I speak the language not I think for some medical terms. I am her2 positive I CDI (carcinoma ductual filtranete. 1.5cm. with 10% intraductal Grade 3 with what seems to be hormonal receptors negative B2 3+ Oh dear I really need to see if I can get this all English. All my best wishes. Myra.

BonnieR · 10-06-2007, 09:35 AM

yes, it sounds like he was referring to "hormone" positive, not node. I know you said you speak Spanish but are you and the onc speaking the same language? I mean that in a couple of ways really. Sometimes I dont feel that my doc and I are speaking the same English! I dont always understand what she has told me. That is why I am sure to write my questions and her answers to be able to review them later. And ask for clarification. My husband has been with me during appts and he will hear things very differently than I did. And he is usually right. Anxiety can cloud our comprehension.
And get that report translated into English. Or at least have it explained to you...
Keep the faith,
Bonnie

myraazzopardi · 10-07-2007, 02:26 AM

Hello Bonnie. Than you for replying to my question especially as you are so recently diagnosed and we all know what we go through in the first few months. You are totally correct about the language. I will check out my pathology report. I wish you, your dear husband and all you family all the love and care in the world. Myra.

kat in the delta · 10-20-2007, 12:33 AM

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 · 10-20-2007, 05:12 AM

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.

Kathy S in Tokyo · 10-08-2007, 05:42 AM

Hi Kat,

My newest oncologist always discusses the treatments and lets me know how awful things could be so I can decide which is worse, the cancer of the the degeneration due to the drugs. We carefully watch and decide when to kick in with the heavy artillery (20 Taxol treatments now because I needed to shrink the cancer in my lungs enough to breath a little last June) and when to wait and watch the cancer which will never go away while maintaining the absence of its growth with weekly Herceptin forever or until my heart protests even slightly. He warned that the first Herceptin treatment might cause a severe reaction, even death, and that if I coughed even a little during the first I.V. I'd have to stay at the hospital overnight or for a few days. I had to mentally confirm the status of my underwear before signing the release for that treatment, just in case I ended up in the emergency room. He asks at every visit about neuropathy (here the big deal is not being able to keep one's slippers on dur to numb toes, so culturally oriented to Japan!). I suppose I'd feel differently if I knew I'd ever be NED, but it seems that the expectations for stage IV are that I can probably have a nice long life by living with cancer and striving for "stable." I appreciate the onc.'s concern for balancing treatments with quality of life at this point. It sure would be nice to have a day or two when I forget to even think about cancer though.

kat in the delta · 10-08-2007, 01:16 PM

I got neuropathy from the taxanes..I took Taxol..some take taxatere...(sorry about the spelling--in a hurry)..
The new thing is just going for a
Targeted treatment that fits You..!!!!!.. Now, some people are not getting the old adriamycin and cytoxin... nor Taxol or Taxatere... Only the herceptin... or the Tykerb.
The smaller number and duration of chemo. drugs, etc... you get seems to be associated with the # of side affects one gets from their treatments. Less chemos and duration of them = less side affects you wind up with.... --This is my personal opinion.....
I got it all !!!! After finishing all + surgery at first and rads,too, I was in Bad Shape-- but it has shown up WORSE after I had finished all for a year!!! .OOoo.and I forgot the Zometa ..the Onc gave me every 2 mos. for Osteopenia..which I stopped...after hearing the
Teleconf. on Bone Health from Cancercare or lbbc.org or y-me.org--think it was from cancercare.org... Listen to some of the past and future teleconferences that the MD Anderson and other Professionals. It is excellant for bone METs...but for what I have..only 1-2x per yr is recommended....
. --I have LEARNED a lot from some of the TEleconferences......... Keep in touch.
Hey and I have talked to gals in Stage 4 who are going on vacations to Fla, etc and who have had S.4 for 10 yrs+++ ...............kat int he delta.

gin-tx · 10-14-2007, 07:33 AM

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 · 10-14-2007, 09:49 AM

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

futurefocus · 10-14-2007, 09:10 PM

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.

harrie · 10-08-2007, 11:22 AM

Hello Kat S in Tokyo,
Before herceptin I was getting a little leary because I was reading about all the side effects many were getting. So I opened up a thread asking who was out there that have been on herceptin and got little if any side effects and many responded that they did in fact got minimal effects. I have been on herception since Feb this yr and so far (knock on wood) I have not noticed any side effects. Also, during treatments, from day one, I have been able to wear any type of shoe that I wanted. Neuopathy has never been an issue with me.
Good luck, hope all goes as well with you as is with me.
Maryanne

Kathy S in Tokyo · 10-13-2007, 12:37 AM

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.