Just found out I'm Her2 positive

snowyday

I'm uspet in the above post I'm asking for any info about herceptin and it's SE's could someone let me know what to expect.  I'm hitting the floor right now. BOOM.

mke

I'm surprised that you didn't find out you were Her2+ before, did they run a more sensitive test on the tissue sample or what?

However for me herceptin was as near a walk in the park as this stuff goes.  The infusion time is relatively short - about 30 minutes, only on the first round did I have any significant SE - flu like symptoms and then only for the first 24 hours.  The biggest SE was a runny nose and it seemed like I had that for most of the year.  I had to have MUGA scans every 3 months because it can be hard on the heart but my heart function actually increased while on it.  Some people do have problems with the 3 week infusion and go to a 1 week one, but most don't find it a problem.

There is a HER2 support group, I'm sure you can google and find it.  It sucks to have to go through more treatment,  and I can sure see why it would be discouraging.  I don't think that you should be afraid - what you've done is likely far more difficult.

jerseymaria

i had herceptin for one year and have started it again...tomorrow will be my 3rd since i started the 2nd time.  i can honestly say i don't really have much of anything in the way of se's.  i do feel a little washed out that day and the next.  i did have shortness of breath when i first started BUT i have severe asthma.  so i always get a strong steroid prior to infusion and that pretty much takes care of that.  i really think that any effects i do have are from the steroid and not the herceptin.  example...i get very little if any sleep night of infusion but that's the steroid.  sometimes the 2nd night i don't sleep real well but again that's steroid related.  this is the reason i jumped on the chance to try herceptin again before trying tykerb and xeloda...because i know it's an easy drug for me to live with and the others have some nasty se's from what i read here. good luck. maria    ps. i get it every 3 weeks.

mimi1030

My mom is on weekly herceptin with her Taxol and gets monthly zometa.  She has no side effects from Herceptin, once in a while she will get a runny nose.  Other than that she has nothing.

My mom's gets a heart study every 3 months and her LVEF has not changed since the beginning, she is still at 65% so far so good.  And it has done wonders on her mets.

Hope Herceptin is good for you too.

Hugs

Michelle

coonie

I've been on Herceptin since February. The only known side effect for me is a runny nose. I go every 3 weeks and it takes about an hour from start to finish. I catch up on everything that's been going on with the chemo nurses:) Good luck!!

Analemma

I read a news article recently, that said that even though her2neu cancers are considered to be more aggressive, that with the advent of herceptin and tykerb, the prognosis is actually better than her2 negative cancers, especially triple negatives (which I am).

I'll post a link if I can find it.  This may actually be good news.

TenderIsOurMight

Thinking of you Snowyday. I'm not HER2 positive so can't help as to Herceptin SE's.

 

Good luck,

Tender 

snowyday

Thank you everyone and to answer your question mke, they apparantly filed a pathology the surgeoun requested about a week after my surgury and it was filed before being signed off so they treated as triple negative now I have to have the herceptin for a year. Yikes.  But is does sound easier. I'm going to check out the Her2 positive section and find out what's new and how the ladies are dealing with it.  I just hate the thought that it's going to take a year and to me it seems forever.  Thanks again all.

Traci-----TripNeg

(((((((((((((((((((((((((((((((Pearl)))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))

swimangel72

Hi Snowy - I responded to your other post, but in case you miss it, be sure to ask your oncologist if your tumor was sent for the FISH test. You can also ask to have your tumor sent to another laboratory for a second opinion (my onc did that for me, since so few Her2+ tumors are Stage 1 and Grade 1 like mine.)

 Check out the information here concerning testing for Her2:

http://www.breastcancer.org/symptoms/path_report/the_cancer/her2_status.jsp

 You can also find tons of information and support at the following web site:

http://her2support.org/

Don't worry about the Herceptin - it doesn't have many side-effects and it's supposed to work very well. Good luck!

GrammyNancy

Snowyday,

I've taken Herceptin weekly since July of last year.  I really dreaded the thought of going every week but I must say that the time as passed quickly.  Infusion is only 30 minutes and the only SE I've noticed is an occassionally running nose.  I only have 3 more treatments and I've got to say I'm a little nervous about stopping them as I've come to consider Herceptin as a lifeguard.

Hugs,

Nancy

otter

Swim, I hope Pearl/Snowyday doesn't mind if I offer this explanation.  Her tumor was HER2 "equivocal" by IHC, so it was sent out for FISH testing.  The FISH test came back positive--it wasn't a strong reaction, but it was unequivocally positive.  She wasn't told about the FISH results until very recently, and all this time her BC has been treated as if it was triple-negative.

So the opportunity to go on Herceptin is very good news.

otter 

Yogi70

Pearl,

I'm on taxol/herceptin right now and so far so good.  I do get the runny nose every now and then.  It's very doable.  (((Hug)))

Zzap

Herceptin - piece of cake compared to everything else.  I didn't have any adverse effects.  A year will be over before you know it.  Sometimes I wish I was still on it, at least I felt like I was proactively keeping the beast at bay.  Now I've just got Tamox. 

NED so far, I'll take it!

snowyday

((((((((((((((((((((((((((Traci you made me chuckle))))))))))))))))))))))))))))))!

snowyday

Otter thank you for explaining what happened for me.  And everyone thank you it does make me feel better, I'm very scared, in my mind I'm going to be going through the crap I did before. But it's loooking good now. Thank for the support.  Gosh took me three times to write support properly reallly transposing today, think I better read instead of typing right now. Gosh I love you gals.

lisettemac

I agree with the others that the Herceptin is good news for you and also that it really isn't that hard to tolerate.  Herceptin is one of the big biotech "miracles," for lack of a better term.  My onc showed me studies that indicate that when you take into account all of the other treatment you've had, Herceptin cuts any remaining recurrence rate in half.  That's great news!  Plus, it's a short infusion, with few side effects.  I sometimes felt flushed afterwards or a touch nauseous.  I didn't realize the runny nose was a side effect, but that explains why I seem to have one ALL the time!  No heart damage here, either.  Good luck with your treatment.

snowyday

Thanks lisettemac, good to no, will carry tissues at all times. 

anneshirley

Snowy,

I had some side effects but they were relatively mild, and also went for my infusion once every three weeks, so at least for me it didn't take up that much of my life.  I'm sure you know that you must get heart scans every three months.  I did have a lot of swelling of feet and ankles during the year, particularly towards the end, but it's completely gone now and it's hard to remember the herceptin journey--long gone from my mind.  

In some ways it's good to know you're HER2 as herceptin is supposedly very effective.  Good luck. 

Forgot to mention the runny nose--definitely keep tissues on hand.  It's still a problem for me, but much improved. 

snowyday

Thanks Anneshirley and Otter and well everone, and swimangel for the site info.  I was wondering what the difference between Tamoxifen and Herceptin. Okay and I know you all are telling me it's a walk in the park but I ended up going into a panic attack Friday afternoon, I called the hospital and asked them if they took out my ovaries would that help me with not having to take Herceptin. I went online and read everything I could about Herceptin the se's the clinical trials, the heart problems and literally scared the heck out of myself, now I plan not to do that again as it took me a few walks around the block to get my common sense back.  But then of course I started wondering what about taking out my ovaries, the genetist told me if I am BRAC 1 or 2 I should have it done no matter what, But would it make a difference!  I'm babbling again.

anneshirley

Snowy, so long as you get your heart monitored frequently, if you are one of those, and there are not that many, who have heart issues, you can stop in time and give your heart a chance to recover.  I am wondering what chemos you have had in the past.  That could be an issue with herceptin and heart issues.  For example, did you have adriamycin?  I had taxol and my heart was fine; I ended up where I began--60.  And definitely check to see if you're eligible for herceptin every three weeks; that made it very easy for me, as it was only an hour out of my life every three weeks.  I don't think there is any relationship between taking tamoxifen and herceptin, although if I'm wrong, someone will correct me.

Now a days I only read cancer site threads if I'm having a problem--political thread excepted.  They helped in the beginning but when I read too much it put me into a panic, so I stopped.  Not sure if this applies to you or others, but I had far fewer moments of dread when I stopped reading the HER2 site threads.  Now, I go back occasionally to see how others are doing.  

I don't think removing your ovaries has anything to do with changing the biology of your cancer.  I would say no. 

kathi07

I had a course of herceptin in 2001.....

Then in 2007, had a recurrence....now I have metastatic disease and am back on herceptin with xeloda.  I have  been on the herceptin for 18 months.....worse side affect is runny nose and watery eyes.....   I have been on other chemo regimens that were very difficult.....herceptin is  easy.  I have been going for echocardiograms every 3 months for the past 18 months......NO problem with my heart!  It has kept my disease in check for the past 18 months... long enuf to let me see and spend time with my first grandchild.  Don't fear herceptin!!! (tamoxifen beneficial for ER+ disease)

snowyday

Hi Shirlanne, I was on 5-Fluorouracil, Epirubicin, Cyclophosphamide and Docetaxol. Plus Rads to the left side.  I was aske to take part in a study about 5-FU and when I asked for the results I was told by my rad onc, " Oh didn't you get a letter in the mail".  And he then got the heck out of the room.  Thats when I was still going after my post surgury path reports. 

So in light of the fact that they misdiagnosed me, I'm not started my Herceptin until I see the 5-FU study results,  They were promised to me and I want them. I'm just plain worried about the heart and the damage Herceptin could do, want to make sure that everything and I mean everythin is checked thouroughly this time.  Thanks for your advice, again. 

And Kathy thank you, I hope that a runny nose is my biggest concern and I'm very pleased that your doing well   And a big congratualations on your grandchildren !!!