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-   -   Please post your two cents on Herceptin "side effects" real or perceived! (http://her2support.org/vbulletin/showthread.php?t=23696)

Andrea Barnett Budin 06-06-2007 05:15 PM

Herceptin Side Effects Vs Taxotere
I have the feeling the Taxotere side effects I mentioned (in post #188) is being confused by some as side effects from Herceptin. A HORSE OF A WHOLE DIFFERENT COLOR, or however that old saying goes. Herceptin is a walk in the park.

PLEASE NOTE -- I posted today on WHY STAY ON HERCEPTIN -- and -- CONTROVERSIAL SUBJECT. It seems impossible to find where these messages landed, even for me, intentionally looking for them. If you are interested, please look for them under SEARCH at the top of the page, or under my signature and find all postings. (I am still trying to figure out how to post a NEW THREAD. Dumbfounded on that one!)

ALSO PLEASE BE AWARE -- there is a Soul Sister who posts under the name Andi and her signature is simply Andi. That is NOT me. I am Andrea Barnett Budin (called Andi by Friends).

Andi, not me, has posted today and is in dire need of all our prayers. She has chosen to go off all treatment as the ca is everywhere and docs have nothing but bad news. I respect her wishes to live the time she has left in peace. That is a personal choice. Andi is a fighter, like me, and hopefully you. I have asked if it is okay to pray for a miracle to come to her. Andi can use all the prayers we have to offer. So please do what you can for her. She needs all our support.

Sending loving, healing energy to All my daring, darling Soul Sisters... ANDI BB

gin-tx 06-06-2007 05:51 PM

Herceptin side effects
I have been on Herceptin and Aredia for almost 1 yr, have constant runny nose, muscle aches, but feel very fortunate I have only those problems. I have dealt with insomnia, which I had before I started treatment. I'm sure there are others but can't think of them at this time. My dr said I have 'chemo brain'. This is my second episode of BC, first 11 yrs ago, had radiation and lumpectomy, this time is more aggressive and also have a tumor on my spine that I had to have treated with 18 radiation treatments before they could start the Herceptin. I feel blessed for each day I have, still working part time, and am thankful to have a job with good benefits.

Keep me informed of your progress. We have to support each other to fight this battle.


kat in the delta 07-05-2007 01:16 PM

kat in the delta
I have been off herceptin for nearly a year after doing 12 weekly treatments(6 with taxol and 6 without weekly), then a larger dose of Herceptin every 3 wks for a year....MY MEMORY IS NOT BETTER !!! It only gets worse...and worse...... go to healthtalk.com and listen to an talk a few months ago... with some radiologist..and MDs.
What is your MUGA score.... My onc would not give me my last 2 heart scans----- which were called"rested-gaited"(MUGA?) Heart scans....
The last score on mine was a 48....--
I saw that 55+ was normal

kat in the delta

kat in the delta 07-05-2007 01:20 PM

I also forgot to mention that I have brown spots that go up my ankles like socks... appearing since being on Herceptin, and that my ankle swell even tho' I am thin and taking a fluid pill.
My Dermo. said it was from poor circulation..and the brown spots were iron deposits..anyone want to comment on this..?? please rsvp Kat in the Delta

MagsB 07-05-2007 01:48 PM

Hi All,

I have been on this site before, but for some reason, I missed this thread - which was exactly the thread I was looking for!

I was diagnosed in Sept 2005, HER2+, ER/PR+, Stage II, age 27. I've had a mastectomy, reconstruction, AC & Taxotere chemo, am a year into Tamoxifen and recently started Zoladex injections to stop my ovaries. I started Herceptin in Oct 2006 and should have been on it for a year. However, I had my last infusion on the 29th May, as I was my Onc thought that quality of life issues prevailed over the benefits of completing the full year of Herceptin.

I've had a number of side effects that I thought I was imagining! I had complications with my reconstruction and it took a full year after my surgery for the wound to heal. 2 weeks later I started Heceptin and the wound opened up again... Now that it's been 5-6 weeks since I had my last infusion, I think the wound is starting to heal again. I have also had severe fatigue; severe cracking of the skin in my hands (I've have contact dermatitis for years - but it's never been this bad - so much so that I found it difficult gripping the steering wheel or holding a pen); generally my skin healing from minor cuts is very poor; I have a lot of back and shoulder pain; I have the runny/crusty nose; I get a lot of blood blisters and ulcers inside my cheeks and lips; within 6 months, my eyes changed prescription and now need glasses to drive and watch TV - I never wore glasses before; Ive had 6 months of acid reflux, which as almost gone now that I have finished Herceptin. I also get leg cramps, hot flushes, vaginal discharge, have difficulty sleeping and my memory is as bad as it was during the chemo, but I think these last effects are Tamoxifen/Zoladex side effects?

When you read back though all these effects - individually they are all minor, but all together, its been a nightmare. As Herceptin is so new to be used in early stage BC treatment, the Onc was no help in preparing for these issues. You know chemo is going to be awful, so you are prepared for it... However, with Herceptin, I thought I should be fine and went back to work part-time, which has been really hard. I'm glad that I was able to get Herceptin, but equally, I am glad that I have finished. I just hope that the effects start to decrease soon - I seem to be keeping the plaster companies in business with the amount of plasters that I go through each week for my cracked hands!!

The other thing I have found difficult throughout my Herceptin experience is the fact that no-one seemed to listen to me... You would think that with such a new drug, the doctors would listen more carefully to us, even though, intellectually, they believe that we should not be experiencing these effects. It took 9 months to get my Onc to listen to me

Anyway, I'm off the Herceptin, so hopefully my quality of life will improve...?

Thanks for reading my rant!

Andrea Barnett Budin 07-05-2007 02:59 PM

I AM ON HERCEPTIN SINCE '98. I get ev 6 mnth ECHO cardiograms. You must be over 50 (Ejection Fraction). I take many supplements to help w/the memory thing and boost the imm sys. I fnd 8 mnths of Taxotere stayed w/me for yrs. I wld say to my onc, I know it sounds crazy, but I still have dp muscle pain in my legs and arms just like when I was on Taxo. Not crazy, he said, other patients have reported the same thing, w/lingering side effects. The end of chemo is the end. The gd news being, I pray, the lingering eff on the bad cells remains.

My onc has put me on PERFUSIA (WHICH IS ARGENINE 380 -- ONLY 1 PILL A DAY, to keep my EF up). You can buy it cheaper, but he prefers the quality of that particular brand. My admittedly long supplement list and to which I attribute much of my "success" -- is in VITAMIN D thread, I think. Otherwise check my posts in general -- for Spiritual upliftment and more.

Docs should listen to you, despite what you'e ON! No side effects are minor or worthy of being ignored!

I had tram flap reconst w/mastec and never had a problem -- Taxotere and Herceptin, Shingles and all the nastiest of side effects aside (from the Taxo and Shingles NOT from the Herceptin). I do have a lowering of my red bld count (HGB) and when it gets 11ish they give me Aranesp. (Used to be under 12, but new rules.) That $7000 injection makes me perky again and keeps me up for mnths. Again, read my supplement list mentioned above for some real ENERGY BOOSTERS + improved brain function from my onc/supllement expert.

MOISTURIZE, MOISTURIZE, MOISTURIZE. Head to toe, including hair, 2X a day, every day! Makes a world of difference. Vasoline, or Ayr oitment for nose dryness. I use CUREL on feet, body. I use Clinique Deep Comfort for hands at least twice a day! Occasionally Sudafed for drippy nose, but generally only when eating and a tissue is needed. My immune sys and energy have improved w/the onc's suggestions --- Phyto Formula, NADH (see list under other post). Could be in 11.3 HGB and shaky thread! Poor healing for me too. No back or shoulder pain. That could be stress. I do take Effexor (anti-depressant). Used to take Zoloft. This helps tremendously. Though never was a pill popper, bc changed that. My doc tells me YOU SHOULDN'T HAVE TO SUFFER. You don't get extra points for suffering. So I decided to love myself and be extra good to myself.

I take 1 Ativan a day, at night (mood elevator, relaxes the 100 mph brain). I deserve a good night's sleep at the very least. Aids in healing (studies show a good night's sleep is essential to good health) AND in functioning the next day! Otherwise I'm useless and miserable. Use sleeping pill as well. Sounds like a lot of pills, and I wish I didn't need them, but w/them my QOL is vastly improved. So seems like a no brainer to me. YOU MUST TAKE GOOD CARE OF YOU, without overdosing, of course, under the guidance of a medical professional.

Leg cramps have gone. Used to have to jump up and press on the ball of my foot for a few seconds and it went away. Hurts a lot, but easily omitted. I do take a muscle relaxant (Flexerol) nightly as well. Maybe that's why that's vanished. No more reflux, but did take Prilosec and it helped that issue. No bld blisters in mouth (except from Taxotere). My eyes do get worse but I'm a lot older, and others on chemo have reported this. I had excellent eyesight until around 42. Then needed glasses, like most that age. Dx at 50 -- 12 yrs ago. See my signature for my med hist.

Yes, Tamoxifen can and does have many side effects. Those who tk it for 5 yrs and stopped only then noticed how much better they felt. Address ea side effect one at a time and try, w/a gd, caring onc to remedy ea one! You owe that to yourself! You've been through hell and back and you deserve a heap of respect for not crumbling ino bitternss!

Herceptin is not a chemo, and doesn't get enough respect, but I tell my docs that -- I'M IN UNCHARTED WATERS HERE. NO ONE KNOWS WHAT COMES FROM WHAT WITH THIS MONOCLONAL ANTIBODY, SO DON'T DISCOUNT ANY THING I REPORT. I'm a guinea pig, writing the books that will come out on this. HELP ME. IF YOU DON'T HELP ME, WHO WILL.

I did see Pegram (and Slamon) on a trip out to Calif. They're the developers of the drug and Slamon discovered the misbehaving, defective gene that is responsible for 20% of bc. The SMART BOMB they developed targets only that messed up gene, leaving other cells alone, letting us keep our hair, BUT... Potential heart problems -- so ECHO every 3 mnths, then 4 mnths, then 6 mnths, NOW I've graduated to annually. Due in Aug. Herceptin is mostly a cake walk. A highly tolerable chemo/monoclonal antibody. When my doc gets snippy and says You're not on chemo, I say, I know -- I'm on a monoclonal antibody. Where exactly is the monoclonal antibody room? I keep winding up in the chemo room with all the other chemo patients. SOMETHING TO THINK ABOUT, DOC.

The energy thing is the major prob for me w/Herceptin and now that's been greaty improved w/ the supplements!

What are "plasters"???????????????

If your onc won't listen to you, I'm sorry to say -- you need to find another, more compassionate doc! You owe that to yourself, with or without Herceptin, just in general. Anything less is just inexcusable behavior. Where's their humanity for God sake????

Glad you felt free to rant. Any time. We're all here for one another.

Sending loving, healing, happy energy your way... ANDI :)

I hot flash since I'm 42 and hate it. Take a # of things to relieve it. Ea contributes a tad. If I stop any one, they get worse. Went to endrocrinologist finally who said could be indication of high bld sgr, and so it proved to be so. Now on med for that, caught before becoming diabetic, but clinically high -- in normal range now w/med. Memory way better w/supplements recommended.

Heart Sutra 07-05-2007 03:06 PM

I have also had side effects from Herceptin. When I discussed them with my onc. he said no it's from the Taxol. My last Taxol treatment was April 17th and I am still experiencing these side effects:

1. Joint Pain!!! (Hips, Thumbs, Feet heels only, Shoulders)
2. Fatigue
3. Eye site changed (needed new prescription)
4. Depression
5. Weight Gain
6. Hot Flashes (Bad at times, maybe 20 or 30 a day)
7. Chemo Brain

Not complaining. I'm glad we have this treatment available. Just wished my doc didn't look at me like I have ten heads when I tell him about it.

bailey 07-05-2007 03:25 PM

Ladies - I'm sorry to hear about your Herceptin side effects. I started on Herceptin in 2003 so it's not a new drug but I am now on Tykerb as they found spots on my lungs but I'm doing fine. With Herceptin you do get muscle and joint pain but for me it was not too bad and I attribute that to my exercise routine. I am in the gym 5-6 days/week and do 3-4 spin classes/week. I don't always feel I want to go and work out but I know it helps with the joints and overall health. I also drink tons of water, eat alot of protein and good healthy carbs. No butter or alot of fats and sugar although I do splurge and enjoy wine. Not sure about the spots around the ankles but if it's circulation you need to get out and walk 3 miles/day or do something active for at least 45 mins/day.
As for the memory loss, that also comes with menopause if you are in it but you need to keep your mind active so I"m not sure what you do for that - read, crossword puzzles, whatever but it does get better.
Kat - Your Dr. HAS TO GIVE YOU that info. He has no right to keep it from you and I would push very hard for that into or just go to wherever you had it done and request a copy from them but it is your right and your Dr. needs to be reminded of that.
If your skin is dry go and buy some vaseline petroleum jelly and after your shower or bath put it all over your feet and then put socks on - do it every day, do the same for your hands at night and put cotton gloves on - again every night. Get pedicures every 4 weeks. Use creams instead of lotions as creams are higher in moisturizing.
I know what you are feeling - all of you. I was first diagnosed in 2002 with BC, 2003 spread to lung and liver and okay till this March and now on Tykerb and Xeloda which are pills and doing great! There will always be side effects with everything to some degree but you can do it.
Another great thing to take for dryness, 4000 mgs. of good quality fish oil pills with EPA and DHA - get the 1000 mg. each tablet and spread it out throughout the day - take 4/day. It's amazing for your skin and just overall health. I live in Arizona and have been through alot of treatment and my skin is as soft and smooth and moisturized as can be - I am 54 and always get comments on my skin so if I can have it living here in AZ you can too.
I hope this helps you all - keep me posted and send more questions and hopefully I can help again.
Sending positive energy and prayers to you all

Andrea Barnett Budin 07-05-2007 03:48 PM

OMEGA 3 EPA 800/DHA400 X twice a day
EPA & DHA NEED TO BE BALANCED. That's what my onc/supplement expert says. He also pushes Neuromins. + I take E 400 X 3 -- good for skin, heart flashes, ummune sys, inhibits metastases, decreases tumor burden. This amnt of E does not interfere w/my cholesterol #s remaining gd. That's important. So cardiol says fine.

ENDING CHEMO DOESN'T MEAN THE SIDE EFFECTS END! Docs say within 3 mnths tops you should be gd as new. My exper -- yrs later after shocks. May therefore be a bit confusing what's coming from what. But, please keep that in mind. My typing in above post may not have made that clear.

Yes, Vasoline/socks helped heals. Clinique helps hands. Curel body. Then the face, of course, whatever works for you, be it baby oil, or Sheisido or whatever works for you. Day and night.

kat in the delta 07-06-2007 12:11 PM

kat in the delta
It's not that my Onc. didn't give me my last 2 or so scores.. HE just REfused to have the HEART SCANS even DONE on me !! -He never ORDERED THEM !!!--just wanted me to get the HERCEPTIN....even when I asked him over & over..
Now, I have poor circulation and swelling ankles and these horrible brown spots/patches running up both ankles !! IF I get a scratch.. I feel like I am on FIRE on my legs.....
ANYONE ELSE WITH THE BROWN SPOTS or patches on legs....?????
Did any of you have a Muga or Heart scan when finishing Herceptin ??

I use aveeno and also Aqua4 creams --esp. the legs..

Kat in the Delta

Andrea Barnett Budin 07-06-2007 01:22 PM

Kat In The Delta
Honey, I think you may need t get advice from a CARDIOLOGIST. Swollen ankles AND you're on diuretics, poor circulation -- these need to be addressed! Your onc should have recommended you follow up w/these symptoms! I don't know about the brown spots, but -- how are your red blood cell counts?????????? (In *normal* range?) Get a copy of your last two blood tests.

Do they do an every 3 mnth comprehensive blood work up as follow up? ANYTHING not within NORMAL range needs to be discussed further. Please do not let swollen ankles slide. It could be a sign of a problem.

When was your last MUGA/ECHO? The cardiologist may want to do another, along with an EKG. You must be proactive and take good care of yourself. If you have an onc who is oblivious to these important matters, you need to move on. These symptoms are very concerning, not to be negated in the least. Call today for copies of all your reports. Fax a signed piece of paper, if need be, to free your records, which you are entitled to legally.

And make an appointment with a well-regarded, highly recommended CARDIOLOGIST. Please, Kat.

Sending loving, caring energy your way... :) ANDI

kat in the delta 07-06-2007 01:36 PM

kat in the delta
Thanks andi,
Will call for all records/go there now....you are right..kat

harrie 07-06-2007 10:18 PM

For a brief time after my chemo treatment ended and I started the 3 wk herceptin regimine, I was getting slightly swollen ankles. To ensure it was not my heart I had a echo done which turned out normal. It could have been capillary leakage syndrome from the chemo, but the edema was on the slight side so all I did was watch my salt and elevate my legs and then it cleared up. I have not had it since. I have been off chemo for almost 2 months and have had several treatments of triple dosage herceptin alone.

Andrea Barnett Budin 07-07-2007 01:31 PM

Please stay close and let us all know what's happening with you. You are very much in my thoughts. So glad you've got a mission in your head, and are tending to business for your wellbeing! Sending loving, healing energy... ANDI :)

BonnieR 07-14-2007 06:24 AM

side effects
I have not read this entire thread. Not sure that I want to scare myself too much prior to beginning Herceptin! But at the same time, wanting to be prepared. My question is, despite the side effects, have you mostly been able to go about daily life? I have travel plans that involve my driving and wonder if that is a good idea if my mind may be cloudy or my vision affected. Do the symptoms show up right away or gradually? I realize everyone is different. I would be taking H solo, no chemo...

harrie 07-14-2007 11:59 AM

Bonnie, I have been on herceptin only for 2 months now and it is a breeze. I am really good and pretty much back to normal from chemo. I, like you, was worried about the side effects from chemo (oops...I mean HERCEPTIN) alone after reading about all the problems other people had encountered. So I started a thread a while ago asking for those who experience little to no side effects at all from herceptin alone and there were quite a few who responded.
So far, knock on wood, I have also experienced little to no side effects from herceptin.
Good luck.

BonnieR 07-14-2007 12:10 PM

thanks Maryann
I appreciate your message. Very encouraging. IF I take Herceptin (the jury is still out!) it will be my only IV drug. No chemo at all. Only Femara.

Gerri 07-14-2007 06:21 PM


Herceptin was a walk in the park compared to chemo. Since you are not going through chemo I can only tell you that the side effects are annoying more than anything. You should go ahead and read the posts to see what you may experience. I finished my year of Herceptin in March and slowly but surely the side effects I experienced are subsiding.

Good luck! Believe it or not, the time will fly by!

astrid 07-16-2007 05:26 AM

Year over
I finished my year of herceptin in May of 2007. I had quite a few side effects that were not listed in the printed material for the drug. My blood pressure rose from 130 over 70 to 155 over 85. It is back to 130 over 75 at last check. My eyelashes fell out every three months over the year. My hair grew really slow while I was on H. But the worst part was the headaches that I started to develop the last few months. I am not prone to headaches and I would get headaches that put my in bed for several hours, a week after my treatment. Have not had a headache since I have been off. I also had to take my infusion for over an hour every time or the headaches the day of infusion would be bad. I had to have a driver to take me home because I would tire all of a sudden. My drive was an hour and I could not risk it. When I got home, I had to go to bed. The bad side effects did not really start until month 10. We quit my H one treatment short of my year protocol because my reactions were getting worse. I did not realize how bad I felt until I see how good I feel now that I am done.

mabrooks 07-16-2007 08:50 AM

Had my third round of Herceptin last week - still no side effects except a bit of a runny nose. I am not getting any chemo either - just starting Armidex. Good luck.

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