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

[RhondaH]

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

[Linda]

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

[Berta]

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

[Yorkiegirl]

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--

[koolbreeze]

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

[saleboat]

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

[Andi]

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.

[Marlys]

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

[Susan Rankin]

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

[juanita]

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.

[suzan w]

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!!!

[Jackie]

I finished chemo 11-05 and Herceptin 8-15-06. I have noticed that my eyelashes and brows are beginning to thicken, finally. My fingernails are slowly growing and improving. I lost all of them, probably from the Taxotere. I only experienced headaches when I would get an infusion without Tylenol. My hair is growing faster (including on my legs---I could do without that). I am stilling swelling a lot in my ankles. I have been on 40 mg lasix x2 daily since Nov. I sometimes think this is better, but not much. The memory and loss of words seems to be getting better, although I still say things that I don't intend to sometimes. I teach school and the kids just look at me like I'm crazy. My energy level is better. Hopefully this progress will continue. I will post again after a few more months.

[Mary Jo]

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

[mts]

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)

[panicked911]

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

[panicked911]

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

[EllaD]

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

[bmuenks]

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

[Olga]

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).

[Mary Jo]

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