Herceptin

[dede]

I have been having a horrible problem with diarrhea. I am on Herceptin every 3 wks, stage 4 ,her2+++. Has anyone else had this side effect?

[Christine]

Dede,
Are you taking any other chemo besides Herceptin? or any premeds?

Diarrea is not a usual side effect of Herceptin.

Hugs
Christine

[Annamarie16]

I've been on weekly Herceptin for a year now and have just the opposite problem. I don't believe herceptin causes that problem. Are you on anything else?

[Ann in Boston]

I have had similar problems both when I was on Herceptin alone and now that I am on Navelbine & herceptin. I am on no other medications and my onc says it is not a normal side effect either.

[Lolly]

When I was on Herceptin/Navelbine I had the opposite effect, along with extremely acid stomach.

[nikki uk]

Hi

Had my first shot of Herceptin on the Hera trial yesterday, so far so good, had slight fluey feeling but otherwise ok....i spoke to my oncologist who has recently been on a conference about Herceptin with "Roche" the European suppliers of the drug and he said that according to them Herceptin is not as toxic on the heart as originally thought and about 1% or less of the women getting Herceptin eventually had heart problems, i'm rather confused now as i have been reading everywhere that Herceptin is very toxic on the heart and i don't know who to believe, i do realise its more toxic when used with a Andrimycyn based drug (i had Epirubicin, andrymicyn's younger sister!!) but i did it before Herceptin so would the results still be the same?
I am concerned as i do want to continue with the trial (2 years of Herceptin every 3 weeks), but at 32 years old i don't want to end up with serious heart disease either, do you think my oncologist is just trying to ease my fears or am i worrying unneccessarily.
Hope you are all doing well today!
Love and big hugs across the waves
Nikki x x x x x

[Sheila]

Nikki
You may be watched closer because of your previous chemo drugs, but your risk is very low when receiving Herceptin alone. I am sure you will do fine. Sounds like the first treatment went smooth...I think they all will for you.
Hugs
Sheila

[jessica]

Hi Nikki-
Thank God for Herceptin! I get the flu-ey symptoms too, but if I take Tylenol during my treatment I can prevent the on-set.If I wait too long & the symps start setting in, I'll take a couple of Tylenol & that stops them in their tracks!
Re:cardio-toxicity...As I understand it, Herceptin reacts to any Her2 receptor present in the body-on Her2+ tumor cells AND Her2+ receptors on CARDIAC cells-that's the reason for the cardiac toxciticy.I'd suggest that you have a baseline MUGA or echo & follow up every 6 or 12 mos.My MUGA shows my Ejection Fraction has decreased by 21% in 2 years, but I don't have any symptoms & remain very active.
We are the changing faces of breast cancer survival!!
Keep the faith & take good care!
Jessica

[Ron]

Nikki,

I only wanted to tell you how happy I am to see your post lately. It is good to see you change from a victim into a survivor. Your initial posts were so depressed but now I see a much stronger person, a person with a determination to fight and survive.

I am happy you were accepted into the Hera two year study, I think most HER2 people would agree that is exactly where you need to be for this time. Who knows what new or different treatment may be available in two years? Try to stop worrying about the “What if’s� of the Herceptin and heart problems, the effects on the heart are reversible.

Worry is the demon of tomorrow who steals the joy of today. Enjoy the celebrations of today, relish the antics of your son, too soon he will be all grown-up and you will be asking “Where did the time go.� Laugh and giggle, it confuses the devil….. Again, I am just happy to see the emergence of the survivor in you!!!

God Bless You,
ron

[Lolly]

Nikki,
I've been on Herceptin for metastatic disease for over 3 years now, after Adriamycin/Cytoxin for primary disease. I have an Echocardiogram every 6 months to check my heart, and it had fluctuated up and down a little depending on how soon after a Herceptin treatment I have the Echo, but it has always been well within the normal range. Odds are you'll do fine, and I presume you'll be watched closely with heart scans so if you start to develop problems it will be caught early, in which case you can decide whether to continue on the study or not. Go for it!!!
Love,
Lolly

[Linda in Calif]

Hi Nikki: I am one of the few unlucky ones who experienced heart problems while taking herceptin. This was because I took it very closely after A/C chemo. I never experienced any symptoms that would have made me suspect there was a problem so be sure to keep up with your MUGA heart scans just to be sure everything is OK. The heart is a wonderful thing and mine recovered in only 6 weeks after I stopped taking Herceptin. So even if you DO experience problems with your heart it doesn't have to mean the end of the world. Also, many of the women that have posted here at the HER2 site have recommended a suppliment called CoQ-10 which can be purchased at health food or drug stores that is suppossed to promote your hearts health. I haven't taken it myself but many swear by it. Best of Luck, Linda in Calif. USA

[Nikki]

Take the herceptin. I have been on it for the better part of two years. I did have some problems that were probably unrelated but it did effect my heart (the ejection fraction). So I had to go off of it. After 2 mos, I was back on and am doing great. I just had a muga done and my ejection fraction was 69% (thisis VERY good). In Dec. it was 52%, so I was taken off the drug.
You will be monitored the whole time, so your risk is very very low.
el

[eleanor]

OOOPS

[eleanor]

I just keep getting ahead of myself.
that last post was from me to Nikki, not from Nikki. Then I went to fix it and hit the wrong button.
Guess I need a shot of caffeine.
el

[Kristen]

Hi Nikki,
I was on study having Herceptin every week and chemo every 3, now I am on Herceptin every 3 weeks. I just had my first triple dose. You may want to check with your study guide, they had me in for a base line muga and echo and after rx4 i had a muga and after 6 and 2 weeks post my first triple,which will be next week. I hope this helps. Kristen

[lauren]

Are you going to have it? Read this board and you will see why many of us would probably think you should....

[Barbara]

Lauren:

I have discussed herceptin with my oncologist. He is a little reluctant but ordered the muga scan and EKG for this Monday and I see him again on Wednesday of this week. He had told me that most patients with HER2 as agressive as mine develop Mets so I do want to try Herceptin. I think my insurance company will not pay but my husband and I have the savings to cover it. Thanks for responding.

[Annemarie]

Has anyone gone on just Herceptin when stage IV and NED? I asked my oncologist and he says w/o active mets I would have to go into a trial where they double blind him as well as me. I have had brain mets and he said Herceptin would not help anyway. I am positive for FISH, her2+++, ER+/PR+. Should I keep pushing my Dr.? Or should Herceptin be saved for active mets? I am thinking let's kill it before it gets here! I would appreciate any sugguestions. Don't mean to be a message board hog.

[Lisa]

I have absolutlely no answer for you since I haven't been in your shoes. My response is to your "message hog" quip. Hey, we all go through times when we have MANY questions. So don't feel the least bit concerned.

Love and light,

Lisa

[Kitty]

I am stage IV and NED and am continuing weekly Herceptin for the rest of my life. I have just recently been declared NED and my mets were to my liver. I was on weekly taxol/carboplatin/herceptin which completely cleared everything up. While it is true Herceptin does not cross the brain barrier and may not be helpful for brain mets, it is something that would be very beneficial to someone who is an overexpressor of Her2 such as you to keep it at bay and going to any number of other areas (such as liver, lung, etc.). Herceptin is approved for stage IV cancer so I don't know why he would need to do anything out of the ordinary to put you on maintenance Herceptin. Perhaps you should seek a second opinion.
Kitty

[lolam]

I would say insist on herceptin. It is just a matter of time now that anyone with HER2 will be on herceptin from the get go. Since you already did get mets to the brain you have a cancer that is on the move. What is to say it will not attack an organ of the body? You can get on herceptin somehow, others have. Be insistent. YOur onc. can find a way if he wants to. HUgs, Lola

[Steph N]

Hard to push those med oncs sometimes!
But, I agree with Lola that you have a cancer that is moving and it is probably just a matter of time before it pops up someplace else.
Herceptin may NOT be enought to stop it if it wakes up and gets going (could slow the process and keep tumor size down), but I think I would want it if I were in your shoes. I am glad to get it now! So far, so good. Still NED.

[Christine]

I had herceptin before and after brain radiatio and continue on the triple dose every 3 weeks with no sife effects. I have been NED ALSO FOR 4 YEARS. It is recommended for stage 4. My Onc encouraged me to contiue, thinking that there may be some leakage in the blood brain barrier from edema and perhps it will go through or maybe it already has, especially during radiation.

[Peggy]

Does anyone know why herceptin stops working in some cases? Why does the cancer progress? I'm looking for detailed, biological info. Can anyone help?

Thanks,

Peggy

[Dolores]

I have noticed that Herceptin doesn't work as well in SOME women that are er/pr+ besides being Her2+ or were given Heceptin after being diagnosed with mets to vital organs.

Hugs & God Bless

[jojo]

Peggy, that is the million dollar question that we all would love to know its answer!

When I had recurrence, my med onc told me: "MAYBE non-hormonal cancer spreading whilst Herceptin holding hormonal cancer at bay...."

I'm on Faslodex (hormonal therapy) and Herceptin of course. I have brain mets, nothing else....

Who knows??????

[celina]

wow...hope that really isn't the case for my sister, who is both - received Herceptin after organ mets; also, ER+/Her2+++.

[Annemarie]

Just a follow up. Last month I had posted a question about strong urine smell and herceptin. It was not the herceptin but the decadron they gave me at infusion. This time they cut my doseof the decadron and it is not nearly as bad. I was taking decadron oraly as well while waitng to get sterotactic surgery.