Side Effects of Ending Herceptin

Joann · 01-18-2008, 08:17 AM

Has anyone had terrible side effects from ending herceptin?

My last dose was 12/14, after going every 3 weeks for 1 year. About 1 week ago, I became emotional, jumpy and sort of out of control of myself. My body is shaking as I type this.

Has anyone had any of these side effects?

My friend who is a PA said it sounds like I am detoxing. HELP ME - please I think I am loosing my mind.

Thank you

debski · 01-18-2008, 12:07 PM

You are not alone- I am still on herceptin and quite honestly I think I am insane sometimes- but to be fair I think that started with the chemo. It's not the sort of thing you tell the oncologist unless you are very honest because you know they are going to shrug their shoulders and look at you like you are the ONLY person to ever say that!
So I think a lot of people do not report certain side effects because , let's be honest when you write them all out it makes you feel like a real winger- (moaner) but we are not. Actually I think we are all fantastically strong most of the time.
You will get better and better as you regain your confidence.
Love Debbie

Joann · 01-18-2008, 12:15 PM

Thank you Debbie for responding

I am sure that many here will not be surprised to know that I am the only one to have ever reported this problem. My regular doctor gave me a low dose of xanax to try and let me at least be mobile.

I'm glad I found this board, as I am sure I can help a lot of people with things the doctors tell you are not happening to you. I had a small support group at Radiation that would share things we had in common that the doctors told us no on ever reported.

Joann

debski · 01-19-2008, 09:49 AM

Do you think that it is natural to feel worried about ending a treatment? I am really looking forward to not having to go up to the top floor of the hospital every three weeks but then I am also nervous about being set free. Maybe it is the idea of not having anytreatment that scares us? I think you can get dependent on the chemo nurses etc.
Well I think I could set up an unofficial support group amongst the people I have got to know at the chemo ward. All at different stages of their treatment. It helps to talk to people who have some idea of how you might feel. I have a friend who had breast cancer 12 years ago- she said the chemo made her hair thin and she felt a bit chemically after but no sickness. Well- I lost every hair and was sick as a parrot with every treatment. So even people who have had other treatments can't really compare.
I think that people underestimate breast cancer- they think it is so totally curable that you have nothing to worry about. What they fail to realise is that it was the treatment that made you ill.
Hope my rants are not too unbearable- I am quite a nice person really just when I get going about this it makes me a little angry.
Hope you are ok today. It is one day at a time.
Love Debbie

dhealey · 01-27-2008, 07:33 PM

It is only natural that we are scared when we fininsh all treatment. We feel like we are unprotected. It has been hard for me to not worry since I finished my herceptin Jan. 8 after being in some kind of treatment for fourteen months and now out the door you go and see you in 3 months. Scary. I find my self now getting angry I got BC in the first place. All my top molars were ruined during chemo and now I am having to have them all pulled and replaced with a partial plate. Wouldn't have to do this if it weren't for the chemo! The AI's gave me side effects, now on tamoxifen, have issues with this drug too. Have stopped it for a week to see if they clear up. I feel like the hormone therapies are aging me very quickly (53) don't want to take them, but then worry about the cancer coming back if I don't. Just want my old life back!!!!! Sorry today is a bad day and I just need to vent.

Joann · 01-27-2008, 09:34 PM

(((Debbie))) we all have bad days - and it's okay.

I am about 3 weeks ahead of you and while I never had fear going off the herceptin, I did have a 10 day or so "detox" period. I thought I was loosing my mind. It has eased up but it was terrible.

I am sure better days are ahead for you.

Joann

Jean · 02-02-2008, 10:44 PM

Debbie,
Most if not all feel the emotional loss of giving up herceptin. It is a double edge sword. As much as you want to complete herceptin treatment and move forward, there is the concern of stopping....but believe me in a few weeks you will adjust and get comfortable. The first 3 month check up
is a bit funny also. Be patient with yourself, it does take time to re-adjust.

And venting here is certainly normal and most welcome....who else but
we can fully understand what your feeling. Interesting, Debbie (NC)that now
you mention your angry at BC...you were most likely always angry at
it...but maybe you were so busy with your treatments you did not have the energy or time for the anger. Aahhh for those carefree days
before breast cancer (our old life back as you said) we never knew how good life was did we? I have learned this is the new norm - learning to
live with bc....yes, think of it this way...LIVE with it...I would rather do that than think of it any other way.

Take one day at a time and do all you can to live as normally as possible.
For me, I try to look my best every day, continue to work and get outside and walk, exercising is also a biggie to help relax you and also helps you to feel better. I don't think there is any one answer - but many things that add up and mean something. I have also found that I do things that I enjoy and love, and I have stopped doing things I don't.

You may find out now that you have completed your herceptin treatments and move forward onto the next journey that you will appreciate having
your days back...and yes, it will be normal once again, a new normal !

Please know it does get better!
Kind Regards,
jean

All good wishes,
Jean

Joann · 02-03-2008, 09:34 AM

Deb,

I was wondering how you were feeling. I hope that the week was easy on your emotions.

Thinking of you

Joann

PatM · 08-03-2009, 08:23 AM

With all emotional aspects put aside, we all know this is difficult to deal with.

Does anyone else feel physical aspects of stopping herceptin? I had a 6 week break in treatment in Apr/May and week 4 started to feel quite ill, stomach and shaky, loss of appetite/nausea. I am just over 4 weeks since my last treatment and again have the same symptoms.

The first time I thought I had a stomach bug, but it lasted a couple of weeks. This time it seems to point to stopping Herceptin.

Anyone else out there feel any physical symptoms?

Joann · 08-03-2009, 03:30 PM

Pat,

It is normal to feel those side effects. I remember them being terrible. Try to rest as much as possible. My friend told me during this phase that I was detoxing and I believe her. I wish the doctors were more upfront about this.

Good Luck
Joann

PatM · 08-04-2009, 04:02 AM

Thanks Joann,

It's so nice to get feedback to let you know it's normal.

Joann · 08-04-2009, 05:36 AM

Pat,

Trust me you are normal. I think during this process (and yes it really is a process) we all start doubting ourselves.

I hope you start feeling better soon and please update here if you need to talk or have a question.

Joann

Karen Wheel · 08-15-2009, 07:13 AM

You are not alone!

I am about 3 months into the drug cocktail (as I call it) and I feel like you feel -but sometimes a few times a day - so I think overall it is the toxic part of the drug (s) ... I had a low dose chemo - but it was still toxic - and even though I have side effects from the Herceptin - I feel strange (ALL THE TIME!) ... I feel that (hope that!) it is helping my body cancel out the receptors that want the cancer to come back again in my body.

I too feel nuts half the time - Eespecially talking to my Italian doctors ---HELP! They think I am just a whacko I am sure, and I ask so many questions, and they think my diet is insane (my eat to live concept!) and no one here in Italy seems to ask questions on the drugs or the therapy - they just say "yes, okay" .... I ask a million questions and keep asking them over and over. (note my Italian is "ok" but not great! So everyone at the hospital has been really sweet but surely they think I am a nut case! --- la pazza ragazza americana! - the crazy american girl!

So you are not losing it! Herceptin (and Chemo) are all drugs. They are toxic and we keep thinking that somehow they will help save our lives (and sometimes it works!) ....

I would suggest my new favorite book to you --

Cancer Battleplan Sourcebook... by David Frahm.
And ... I would suggest doing a complete cleanse and juice fast to detox (I'm doing one the end of September when my radiation and all my supplements arrive from the US - as I live in Italy) and ... I think this might help me (and YOU) get the toxic stuff from the treatment out of our bodies.

Our bodies are amazing and given the right amount of nutrients and food they can literally heal themselves.

AND...Sometimes I second guess myself for even doing this conventional medical cure! ... but ... I think I have to do everything we possibly can to try to save our own lives!

Live strong! Feel free to email me if you want more info. karen_mppseattle@hotmail.com

:-)

Karen
Age – 44 pre- menopausal
No children – no pregnancies
2-09 – Biopsy – Cancer
3-09 – Partial mastectomy Right – 3 nodes taken but not involved
Tumor results: 1.5 cm – Stage 1 - Her-2 +++
Estrogen positive 80% - Progestin 10% - Ki67 postive 30%
4-09 – Started Herceptin (for 1 year every 21 days)
4-09 – 6-09 Chemo – 9 weeks of Navelbine
7-09 - 30 sessions of radiation (almost finished!)

DianneS · 09-07-2009, 08:24 PM

So......I have only two more herceptins, ending treatment Oct. 8. I didn't know about post-side effects. Ye gods.

What should I expect?

How long does it last?

Does everyone get the side effects?

Thanks,
Diannes

ElaineM · 09-07-2009, 09:15 PM

Doctors and scientists conduct their clinical trials. They tell us how we are supposed to feel and which side effects we will experience based upon the results of the trials. Well, the brave people who participate in trials have to meet very strict criteria while they are in the trials. The drugs get approved after that. Doctors start prescribing those drugs to people all over the world who are different and unique. We usually have the same organs, but our bodies all behave differently under the same circumstances. We don't have to meet the same criteria as the people in the trials. We may have totally different experiences with the drugs than the people who participated in the trials.
Doctors sometimes don't realize this and are sometimes caught by surprise when their patients start asking about other side effects that are not on the list of possible side effects. Doctors need to expect the unexpected. We are allowed to get side effects that are not on the list !! The good thing is that there are sites with great people like we have here who can share their experiences. That alone makes us feel a little better. Sometimes we can help each other figure out how to cope during the not so good days.

ninicruce · 10-04-2009, 12:55 PM

After 3 yrs of taking Herceptin, the dr. and i have decided to start weaning myself off. Because I read this thread, I asked to go off slowly. Every 2 months. I will get my regular one in Oct. but then wait till Dec. for my next. I will post if I have unusual effects. Thanks for sharing!!!
nini
92- masectomy, hysterectomy , chemo, raditaion,Stage 2, 1 +, estrogen +
Clear for 14 yrs!!
06-HR2+++fast growing tumor, Stage 2, HR2++, Chemo, Heceptin 3 yrs.
God bless, Nini

Brenda S · 10-05-2009, 05:33 AM

Since ending my chemotherapy--see below-- I have continually endured significant bone aches. I have an especially painful right hip. The "pain" is ongoing and is ever present. I did have a full body bone scan to eliminate bone mets...completely clear! Not sure if this is TC or Herceptin related...but it hurts!!!

ninicruce · 10-05-2009, 08:07 AM

Thanks for replying! I don't know alot of people who have done Hercep. for more than 12 mos. Except one, who had taken it for at least 5 years. She encouraged me to stay on for as long as possible. So, i am going to be seeing how this goes. I had the most bone pain while i was doing neulesta. God bless,
nini

Mary Anne in TX · 10-05-2009, 08:24 AM

Hi!
I had the anxiety kick in around 6 - 8 weeks after stopping herceptin. At first I thought it was just fear about being off herceptin and the cancer returning. But the anxiety has remained to this day (9 months later). I've taken one zanax (sp) but am trying to learn to talk myself through the crazy times. Stress just does me in. I no longer think that it is temporary. For someone who used to be at my very best in stressful times, it's the pitts!
I was warned that I would experience lots more arthuritis type aches and pains and I sure have!
But there's good too. My hair is back to years ago (straight and boring, but mine & familiar), my nails are strong & grow like a weed, and finally I'm talking to people again.
It's like someone else lives in my ol' body. But I'm enjoying getting used to no treatments. I stay on alert for any signs, have regular visits every 2 - 3 months, and am getting on with life!
I confess that raising my granddaughter really helps. No time to worry too much around a 10 year old!
Best wishes, ma

ninicruce · 10-05-2009, 09:46 AM

I appreciate the reply! This is my 2nd go thru ( 1st in 92) and just have a greater fear of reacurrence. But I also have always been pretty mellow and have a strong faith that God supports me. It's good to hear from others who are going thru the same decisions. I am thankful that Herceptin is now available . In 92, i was not HR2+, but 2 of my dear friends were and did not make it thru. Did you just stop in one month?