***Request for those of you finished with/finishing one year of Herceptin***
 

Could you fill us in on which, if any, of your symptoms on herceptin improved when you stopped (please also let us know how long it has been since you had chemo , as some of your symptoms may have lingered from that) and whether you are ER+ or ER- and hence if you are still on tamoxifen or an AI
(which might also contribute to your symptoms) as well as your menopausal status (in or out)


This is ground-breaking pioneering stuff--neither Genentech nor your oncologists have probably started a study of this type.


I am sure many who are nearing completion of their Herceptin as well as many just starting are curious...


Among the questions:


is your vision improving? are your bowels improving? headaches? loss of words? dry eyes? aches? dry nose/nose bleeds? exercise tolerance? eyelashes or eyebrows? ...


Perhaps putting down your date of last herceptin and updating this every 3 months would be useful, as Herceptin antibodies are supposed to stick around and be measurable for 6 months after finishing the last dose.


Now this is information you can't look up!!


THANKING EVERYONE IN ADVANCE

Rhonda

Hi Rhonda:
I think this is a great idea, and I share your curiousity. So, I'll start...I recently finished my year of herceptin, so I'll need to update in a few months.
My last 3 week herceptin was August 8, and I finished chemo the end of October, 05. I'm hormone neg, post menopausal (I'm 53), so I'm not taking anything now.
I had few side effects with herceptin, mainly a mild runny nose, post nasal drip, which seems to be going away. I'm also starting to feel ever so slightly more energetic (I've been running and working out since finishing rads) and clearer in the head. And it seems that my hair is already starting to grow a little faster (my hairdresser will be able to confirm this when I see her next.) So maybe all this is in my imagination -- I'm not sure. All I know is that herceptin was a very easy drug, and yet, I'm feeling better and better now that I'm off it.
Linda

Hi Rhonda: My last herceptin was July 14. I think I have maybe a little more energy but not a lot. The runny nose is better. I haven't managed to lose any weight yet but I haven't really been working on it like I should. BERTA

Hi Rhonda, I have only been off my Herceptin for a week now, so not long enough yet for any symptoms to disappear.

I finished my last chemo last year August 15. I am ER/PR--

Rhonda, I will finish my year of Herceptin next month so I will check back in on this message later and put in my experiences. Linda

I finished chemo on 9/23/05 and finished Herceptin on 7/24/06. I'm on Tamox.

So far, I've lost the runny nose.

Jen

Hi Rhonda, this is such a good idea! I finish next week, so I will be checking back in the future to let you know how things are going.

Rhonda,
I finished 3 weekly Herceptin 7/11/06. Finished A/C 7/5/05. My worst symptom was diarrhea. Biopsy of colon showed "micro colitis" possibly secondary to "drug effect". I think this meant the Herceptin. I lost 13 # in 3 months from persistent diarrhea. However I have gained that back and the diarrhea has stopped. Other than the diarrhea my major complaint has been the horrible condition of my finger nails. And that has not improved. The skin around my finger tips splits and are extremely painful.
However, I have "no evidence of disease" and I can put up with a lot of side effects to maintain that status. Oh, the runny nose is getting better.
Marlys

Hi,

I finished Herceptin on June 20, 2006 after weekly infusions for one year. My post nasal drip is much better. I still have insomnia, not sure it was from the Herceptin. My energy level is better but I do tire easily. I need to exercise as I think this would make a world of difference on how I would feel. Now that the weather is cooler I plan to start walking again. My vision is no better. I find myself wearing glasses all of the time now for any kind of close up task. My joints ache mostly after not moving around for a long period of time, sleeping, reading, etc. I find if I keep busy and moving I don't experience the pain as much and don't think about it. I think Femara has alot to do with the joint pain. I started with Arimidex and switched over to Femara to see if the pain would get better. Not much difference. I think it is something I will have to live with and if the Femara keeps the cancer from returning I will gladly do so.

Being off of the Herceptin has been nice but it was my security blanket. I worry more than ever about the cancer returning. I am trying to stay positive and my faith is strong. Having breast cancer has changed my life in so many ways. I definitely have a different outlook on life and I thank God everyday for "Herceptin".

I will post again in a few months regarding being off of Herceptin.

Susan

I finished cmf chemo a year ago in June. And i had my final herceptin June 21, 06. I was stage 1, er/pr-. I am chemopausal and not taking any other breast cancer meds at this time. My blood counts were still down in August when my family doc checked my cholesterol again. My vision has improved, but it's still not as good as it was before. I had ibs before this, so nothing changed there except a little more sensitive now. Headaches are fewer and farther in between thankfully. I'm still at a loss for words a lot. People are just used to it now though. Most of the aches are getting better except in my ankles. They are worse in the mornings. Didn't have a problem with dry eyes or dry nose, mine ran all the time which isn't so bad now. I still have a problem with my energy level, but doc says blood counts could account for part of that. And i still have problem with my right hand swelling, cancer was on the left side so all of my treatments went in on the right hand. I never lost my eyelashes or eyebrows even when I did tac with the first onc and lost all of my other hair. My fingernails aren't peeling as bad as they were and are finally getting harder. Still have insomnia, but doc says menopause can do that. I will post again on this in about three more months.

I agree, this is a great idea...my last treatment is 10/4 it has been every 3 weeks. I am also on Arimidex. Will keep checking back to see everyones progress...Rhonda...start writing the book!!!

Here's my experience...
 

My last treatment [was on a three week dosing schedule] was I think in June. I am ER+ PR- . My eyes have stopped watering as much but my vision seems much worse. Still very sparse eyelashes and eyebrows. Energy level is much better but I do not seem to heal and recover as well from colds as I used to. Pretty constant muscle and joint/bone pain but I attribute that to Femara. And I am very happy to report that memory functions are getting back to a reasonable level! Will check in again in three months.

After three months...
 

I finished Herceptin (one year) in June (5th I think). My last chemo was Oct, 05. I am gaining energy and blood counts are coming up. I still haven't lost weight, but my body shape has gone back to normal...I have a waist and don't look like a football linebacker. My runny nose is gone but I still have very thin eyelashes and eyebrows. The chemobrain is gone but I still sometimes search for words, mainly nouns (hope that changes soon). I am having more days where I feel "good" so I am very hopeful!

Peggy

I had Herceptin weekly for one year. After my reaction to the first one (which I got with Taxol) I did not have any reactions that I can recall. In fact I opted not to have any pre-meds with it after that first (or maybe 2nd) time. In retrospect, I am wondering if I may have had some Tylenol just before it, but I don't think so. One thing, though, I asked if it could be given over an hour instead of half an hour. It gave me time to do a nice power nap and relax. I asked for that because I think, again if I remember correctly, that I had read that it may be more effective if given at slower rate.

Just bringing this one back up
 

I thought that it was getting buried in all these newer messages and I think that alot of us want to know how everyone is getting on post herceptin.

This is all so good
 

Hi,

I finish with Herceptin in early Feb. 07 and I'm anxious about what all our results will be post Herceptin. I've been told that with the Chemo it could take a year for our bodies to come back to it's full potential with energy levels. But seems no one knows what to expect from our bodies after we're all done with Herceptin, so with all of us keeping track on one another is such an excellent idea. Congrats to all of you who have finished your herceptin treatments (even though it makes us feel like our security net is gone). Hugs to all.

Sue

This is a great idea, and I hope there continues to be lots of response and info shared. Most of you know my story but I will add it here as part of this research. I was diagnosed with stage IV her2 mets to my lungs in July, 2004. It was totally unexpected, being 14 years since my last mets in 1990, and almost 20 years since my first BC diagnosis in 1985. I finished 15 months of herceptin in Nov, 2005. My onc would have continued it except that my last MUGA showed my ef had dropped to 30. You may remember that I started out immediately after a heart attack, so we kind of expected the ef would drop. I had navelbine too the first 6 months, and have been on femara from the first and will continue. I had triple bypass heat surgery in May and am now recovering well from that. My main complaints with herceptin--and I really didn't have much to complain about even with the navelbine--were very soft fragile fingernails, no eyebrows and diarrhea. Marlys, you will be glad to know the nails do get better! I do a french manicure myself now using lots of clear polish, and my nails have never been so long and strong. Only one eyebrow grew back, though! and the other one is sparse---but a little makeup fixes that. Everything else is back to normal, and I never did lose any hair. My last PET/CT showed NED again for the second time. I lost 55 pounds in the first few months after going on herceptin, and am still very slender. Had to buy all new clothes (bummer!!) I have moved from Az and my 21 years with the same onc (THAT was hard to leave!), and am in St George, Utah now. I will find a new onc soon, and cardiologist, too.My Az onc said I could go back on herceptin if I ever need it, but he expected that I would do fine---just be vigilant! It has been over 21 years since my first BC diagnosis, and I am 76, so I feel greatly blessed and very, very thankful for herceptin. BC is a beast, but it has never been more manageable , and there has never been more hope! This website is one of the greatest blessings! I have gained so much from it, and I hope to always be available to anyone I can help in any way. Hugs, Tricia

I finished my last dose of every three week Herceptin in mid July so I am now about 3 months off of it as next dose would have been first week in August. I only had it with Taxotere. I did not have A/C as recommended. I was diagnosed stage one in December of 2004 lumpectomy, node negative, ER/PR negative, Her2+++. Had radiation and did not start Herceptin until a few months later and the doctors would agree to it.
I have noticed improvements. Normal bowel movements being one. Beginning to fall asleep a little better, a little more energy and just feeling a little more normal. My mind seems to be functioning a little better. Short term memory better.
I would suspect that I would be doing better still if I hadn't had trouble with having my port removed--1.5 weeks feeling yucky from the Morphine. A strenuous, vacation, (strenuous for me many others would not consider it bad. Long plane ride and no sleep didn't help) And now I have had rather major dental surgery and have to recover from that. That will take a while for me as I sure do react to about everything.
My hair and eyebrows/lashes have returned. They seem to like my not being on Herceptin. I started gaining weight right after I finished the Taxotere/steriods and stopped gaining when I stopped Herceptin. I wish I could say it was easy to lose these 10 pounds and hope to report that at my next three month check in!
If anyone has any questions please ask and I will plan on checking in in 3 more months.
Janet

Good Morning Everyone,

I am 2 weeks and 2 days out of my last herceptin which ended October 11th. I received herceptin for 1 full year, every 3 weeks. I was er/pr negative. Her2neu positive. I was 45 at time of diagnosis. Did 4 A/C and 4 Taxol dose dense regimen (bi-weekly). Chemo put me into menopause.

Anyway, herceptin and I got a long pretty well. I had one muga at 4 months into herceptin and was told it was fine. I never felt fatigued while on it and had only a little tummy trouble. Nothing major - never affected my appetite or anything like that (unfortunately - hehe). I did experience some left rib/side pain sporadically - some diarehhea and gas pain - also sporadically. Sometime the symptoms would be worse after certain infusions. Not sure why. Anyway, this last one now, being 2 weeks and 2 days out I feel great. The rib/side pain is hardly there - no diarrehhea this time - stool color back to normal (that happened too a couple times during the year - had a lighter - more yellow/tan colored stool).

Overall though, feel great! Is exercising like I was before chemo - 2 - two mile powerwalks a day. (during chemo usually managed a 2 mile walk almost every day) Just recently started jogging during parts of my first 2 mile walk.

Take care and God Bless.

Mary Jo

Finished 1 yr in July '06. Dx'd Aug. '04

Crusty nose - Gone
Sinus drip - gone
Rosacea - gone
Itchy skin - Almost gone
Fingernails & toenails - not splitting anymore
Hair - looks better than ever, growing like "the good 'ol days"
Water gain - still lingers, swollen feet by noon and have gone up in shoe size.
Vision- need glasses now; could have been the chemo?
Mood - much better now that I no longer have the queezy feeling


Maria (MTS)

wow thaks to all of you for keeping us updated. i will be finishig a year of herceptain on Wednesday - day before my 45th b'day ! I did not do chemo - but am strongly pr and er positive so on arimidex and lupron. - I am told it takes three months for hercpetain to leave your system. WIll be interestig to see which of my symptoms abate - memory loss, aches, thin nails, ADD, weight gain are the biggies . Will keep you all updated.

Susanne

opps forgot to add that I started herceptain weekly and then went to every three weeks end of April. Symptoms definitely increased after I switched to every three weeks.

Susanne

This is all very interesting and informative. I finish my herceptin in January and will check back to post any improvement I notice. It's hard for me to tell sometimes if my side effects are left from Taxol, such as my neuropathy. That continues to be a major block in my progress. I am fatigued but again, it has been so long - is it herceptin or chemo?? I stopped wearing my wig the beginning of October. Had my hair colored and just evened off. It has not grown one little bit like it would have in the "old days". It will be interesting to see if that changes when I am off Herceptin. Thanks to everyone!


EllaD

Ella
I think you will see some postiive changes when you are done with Herceptin. Much of the Taxotere pain left, my eyesight went back to what it was (in some ways it was actually better on Herceptin!) and my hair is growing in much faster. Well, I think it is. It has always grown rather slowly. Nails haven't really improved, yet. I am still hoping. Actually, I am hoping they will be better than before!
Do let us know what it is like when you finish!
Janet

I've been off herceptin for three months now. My eyebrows have grown back for the first time since chemo! The direahha has also improved a lot . I've had some trouble with my connection so my user name has changes but I am still BERTA

Attn: Rhonda
 

Dear Rhonda!

My history of bc is similar to yours. At the age of 42 I had lumpectomy (Stage1, 1,9 cm, 0 nodes, ER/PR-, Her2+++) on 12 Jan 05, finished CEF chemo on 30 May 05, 30 rads on 16 Aug 05. I had my last Herceptin on 15 Sept 06. I had no problems with Herceptin, only runny nose sometimes. Thank you for wonderful homepage. Olga (Russian from Austria).

Well, I felt it was time to FINALLY post. My last herceptin was October 11, 2006. Here we are, Nov. 3, 2006 and I am feeling awesome. I handled herceptin pretty well. I received my herceptin every 3 weeks for 1 full year. The worst symptom that I had - or I probably should say the most persistent symptom I had was left rib and side pain. My breast cancer, by the way, was on the right side. I also experienced some diarrehea and had more gas than normal. Naturally, it scared me countless times during herceptin treatment, thinking DEFINITELY I had cancer on my left side ribs. My oncologist assured me each visit that I was "perfect" and there was nothing over on that side and she wasn't concerned. Well.............low and behold...............................the rib/side pain is gone. So, it must have been the herceptin causing this because it is over. I'll get occasional twinges but hardly anything at all. The gas and diarrehea are over as well.


So, I'm getting on with my life.............thankful for each day the Lord gives me.

Mary Jo

I just might be the odd-ball out here.... I have been on herc for 15 months now and we intend to keep me on it indefinitely, as long as it continues to work. I started Herc with Taxol/Carbo Aug 05 after a PET and rising tumor markers revealed small spots in my lungs/chest nodes/underarm node. Dropped Taxol/Carbo in January and stayed on Herc. Rising tumor markers and PET revealed again in Aug 06 that I had 3 small spots in chest nodes again, so we added Taxol back in (no Carbo this time because it was beating up my bone marrow too much by the time I finished it in January). At this point I am on Taxol and Herc indefinitely to 'control and suppress' disease. So far since August, CA15.3 tumor markers have stayed stable in the mid 20's - so at least they aren't rising! In the months from Jan - Aug this year when I was on Herc only, I didn't notice any terrible or distinct side effects... but then all I had to compare it to were the side effects that came along with chemo. Luckily I have tolerated all chemos and the herc pretty well. The Taxol/Herc combo is not too bad. Mostly just peripheral neuropathy in toes and fingertips, and no hair/eyelashes/eyebrows, but all in all I handle it really well. Oh, and runny nose with some nasal dryness and scabbing, but I can handle that.

I will be the test case for what Herc does to you after 2,3,5,10 years (I hope!)... I just hope it continues to work for a long time. But hey - I haven't even scratched the surface yet of other chemo drugs that I can try and then there's always Tykerb!! Yippee...


B.Hutch
DX 11/15/03
Right Mastectomy 12/9/03
Stage IIb, 1 positive node
HER2 +
ER+ PR+
2.5 cm tumor
TAC - every 3 weeks x 6, ended 5/30/04
NED

DX Recurrance 8/23/05
8 small spots in Lungs/chest nodes/underarm node
Herceptin/Taxol/Carboplatinum - every 3 weeks x 7, ended 1/30/06
NED

Stayed on herceptin - every 3 wks.

DX Recurrance 8/29/06
3 small spots in chest nodes
Herceptin/Taxol - every 3 weeks indefinitely or until we need to change
to something else.

Finally have something to report!!!
 

I finished my one year of Herceptin on 9/27 and FINALLY, my eyelashes and eyebrows are starting to fill, and my hair is growing at my normal fast pace!! I didn't realize that the Herceptin was affecting my hair growth. I thought it might have been the effects of the chemo. I am SOOO excited to see my eyelashes and eyebrows thickening up, and my hair finally starting to turn the corner. It also feels a lot softer.

I wish I could say I felt a lot more energetic than I did before, but I don't (of course I also have twin 3 year olds and a 5 year old!). I never really had any other problems on Herceptin.

Natalie

Herceptin and me
 

I was Dx on 12/05. Surgery ( Mast -left side only -on 2/06. I finished FEC100 ( x6 ) on July/06 and started Herceptin (x 17) 3 weeks after chemo, given every 3 weeks . No aromatose given so far. I was postmenopause -56 yrs old when BC was DX: Stage 1, grade 3, ER+ PR- and HER2 +++ .....
So now I finished my 4th.dosis of Herceptin. Except for very bad headache for 2 days and itchy /dry skin and lots of problems with toe-nails ( losing some of them) can not say that is so bad as I expected. I am usually tired though -on and off. If I move around seems to go away . Short memory stinks and yes dry eyes and like a constant nose cold. Joint pains and sort of electrical shocks on extremities and surgery area. ( maybe due to Chemo and not Herceptin)
Will keep you posted when I finish.
HUGS all and keep moving!! I lost 5 pounds since I started Herceptin..I paint, walk and do lots of house cleaning and laundry Haha
LILI7

PS: Forgot to tell you that right after chemo my hair started to grow fast together with eyebrows and eyelashes. it continues with Herceptin but at a slower rate.

Ended Herceptin 9/29. Runny nose is much better. And, like Natalie - my hair is growing faster - absolutely it is (because I have roots to do so I can really tell). Its nice because it has taken me over a year to get to the style I wanted in a picture (needed about 3 inches of growth) and I am just about there. This should have been a breeze but my stylist said my hair was growing sooooo slow (but at least I have it - my pix on this site is recent (taken at the end of August)).


That's it so far.

Becky