Stopping Herceptin

miss di · 04-02-2008, 09:29 AM

Hello Ladies,

I was wondering if anyone had to stop Herceptin for any other reason than low MUGA scores or it stopped working.

Thank you in advance,
My best to all,

Di

tdonnelly · 04-02-2008, 03:19 PM

Hi Di,
I stopped Herceptin about 7 weeks ago. My blood work showed elevation in regards to my liver. After the last infusion I became very nauseated and have been ever since. I need to have a Scan of Pelvis/Abdomen to see what is going on . I also started having a tingling on the right side of my face. It comes and goes. My last Muga was 61%. I had 12 treatments of Herceptin.

miss di · 04-02-2008, 07:19 PM

T,

Thanks, that is one of my biggest problems, nausea and abdominal pain. Nausea is almost constant. Not happy with weight loss either.
Went from every 3 weeks to weekly hoping would help. So far can't see a big difference.
Thanks for answering, looks like it's you and me. Hope you feel better and your tests go well.

Di

Bill · 04-02-2008, 07:39 PM

Miss Di, I'm sorry, but I can't help with your Herceptin question. But I was wondering about your nausea and pain. What are taking for both? It's important to take those medications before the symptoms strike. Please know that you are in our thoughts and prayers, Bill

juanita · 04-02-2008, 08:12 PM

I'm sorry to hear you have to stop the herceptin. I know it's not for your muga, but I was lucky and mine actually went up and not down.

miss di · 04-03-2008, 06:06 AM

I might have mislead you. I haven't stopped the Herceptin yet. I'm going to be stopping if all my tests, i.e. Pet, labs come back with no new spots in May, started last August. My onc wants me to take a break as I am going to need it for "as long as we can use it." Wants to give my heart a break. This actually scares me but I understand her reasoning.
As for stomach I take Pepcid, if something for pain just Advil but not often as it can cause stomach problems. I also take Ativan as needed and Arimidex daily.
I have other side effects, but the nausea seems to bother me the most.

Thanks alot,
My best to all,
Di

Hazel Joyce · 04-03-2008, 03:46 PM

I was supposed to have 2 more treatments to complete my year's worth, but I had some kind of allergic reaction to the Herceptin today, so I won't be getting any more. My onc says that she would consider giving me Herceptin with pre-medication if I needed it in the future.

miss di · 04-05-2008, 06:18 AM

Hazel,

Can you tell me what kind of reaction?

Thanks in advance,
Di

Hazel Joyce · 04-05-2008, 07:28 AM

I saw the onc at 9 am yesterday. She said that I had 2 doses of Herceptin left. I have been getting Herceptin since April 2007, so it's been almost a year. After the onc, I went for my infusion. About 10 minutes into the infusion my face was warm and flushed and I had a tight knot in my upper abdomen. Then I got shaking chills. Then I got a hot sensation in my chest and was short of breath. My skin was red all over (no hives or itch) and my eyes were puffy and red. My blood pressure went up to 188/86. My pulse was 120. (Blood pressure usually drops below normal with allergic reaction.) The chemo nurse said that they haven't seen this reaction to Herceptin. They treated it immediately with IV steroid and IV Benadryl and it subsided.

I do have an allergy to a preservative in injectable anesthetic. Maybe it's related. Anyway, strange that it would happen at 49 weeks into the year. The onc nurse said that it was a "classic Taxol reaction" which makes me wonder if something went wrong in the pharmacy. The pharmacy automatically investigates all adverse reactions.

The onc said that if I needed Herceptin again down the road, she would give it to me with pre-medication (steroids, Benadryl).

Other than this peculiar episode, I stopped Herceptin for 4 weeks after 9 doses with Taxol because my EF dropped to 51%. I have had no further heart problems.

I'll update this post when I find out what caused the reaction.

The Herceptin literature says that some people may be allergic to a component (benzyl alcohol) in the liquid (Bacteriostatic Water for Injection) that is used to reconstitute the Herceptin powder before they put it in the IV bag. In that case, they would reconstitute it with Sterile Water. I don't think that this would cause nausea and abdominal pain, though.

fauxgypsy · 04-08-2008, 08:50 PM

I have never been given Herceptin without Benedryl as a premed. I asked about it because I hate the way Benadryl makes me feel and was told that if I had a reaction to the Herceptin they would not be able to give it to me again so I still get the Benedryl prior to the Herceptin. I am having a problem with peripheral edema in y right hand that I believe may be a side effect of the Herceptin but I have been wrong before. Good luck.

Leslie

Hazel Joyce · 04-09-2008, 01:36 PM

To clarify: The infusion nurses gave me Tylenol and Benadryl in pill form before all my Herceptin treatments. If I needed it again, they would give me IV Decadron, IV Solumedrol and IV Benadryl before the Herceptin.

Thanks, fauxgypsy! I needed to add that info!

Ellie F · 05-05-2009, 10:04 AM

Hi everyone, just wanted to chime in to say here in England you are not given any medication either before or after you receive herceptin.
Ellie

Sheila · 05-05-2009, 11:36 AM

I've never been given or taken anything as a premed with Herceptin and I have been on it 5 1/2 years, every 3 weeks, weekly and every 2 weeks, whatever my chemo schedule is....my Muga is 68%....but remember, it affects everyone differently!

DianneS · 05-05-2009, 09:37 PM

Hi,

I began Herceptin in November, 2008. I believe my next one will be #10, and I am considering stopping. My echocardiogram is 70% and I would like to keep it that way. Since finishing the rounds of the toxic stuff (Taxotere and Carboplatin) March 12, I have just had Herceptin, and notice that my joints/muscles bother me. Also I get swelling and painful calves/upper thighs and I believe Herceptin causes this. My eyes are perpetually runny, the tear ducts are frequently blocked, causing red irritated eyelids, crusty stuff around eyes in the morning. Add runny nose as well.

Also, psycholgically it is difficult to face an IV infusion every 3 weeks. I can certainly appreciate those of you who have to have these longer than the prescribed year.

I am wondering what the thinking is behind giving a year's worth of Herceptin? Aren't we all different? I think I read somewhere - maybe on this forum - that in Europe they said that giving 9 treatments (or months?) is just as effective as a year of Herceptin.

I disagree with my doctor who calls Herceptin 'baby chemo' because there are no side effects expected! Excuse me!!??

I will be asking my onc about quitting this June, or earlier. I don't like feeling tired all the time and achy....but I have to weigh that against the HER2.....don't know what to do.

Also, in B.C. Canada we are not given anything before Herceptin or after, unless there has been a problem.

Diannes

WomanofSteel · 05-06-2009, 05:33 AM

I am not given any premeds before herceptin. I am assuming that you are her2 positive. If you are newly diagnosed and not stage 4, one year of herceptin can be a huge benefit to you. It can keep you from progressing as the rest of us did. It is really not much to do in comparison with going for treatments every week because of a reoccurance.

Nancy L · 05-06-2009, 11:59 AM

I have been on just Herceptin for 4+ years and have never been given premeds. Unfortunately, I progressed even after staying on it continuously since diagnosis.

sassy · 05-06-2009, 07:54 PM

I would suspect that Arimidex is part of the problem. Many, including me, have had fairly severe joint and muscle problems on Arimidex.

Just a thought.

swimangel72 · 05-10-2009, 10:17 AM

My last Herceptin treatment (or two) caused me extreme fatigue.......and shortness of breath. I was convinced it was the Herceptin, but my onc thought I just had a cold and gave me antibiotics. Fortunately for me, the insurance company refused to pay for the last treatment so my onc said I could be finished - which was great so I didn't even bother fighting with the insurance company. My onc has me scheduled now for a final muga scan (I'm already feeling better - a month since my last Herceptin) and also a cat scan of my lungs since Herceptin can also cause lung problems. I was getting treated every two weeks - and although it was a bit of a drag ( especially since earlier in the year my port had to be removed) I didn't have any problems with the Herceptin. No pre-meds were necessary at all. I did experience a lot of bone pain but I assumed that was due to the Arimidex.

Anyway - all this to say - I do believe it's possible towards the end of a year or more of treatment with Herceptin that an infusion side effect could happen even if you've never had problems before.........possibly a person's body just plain gets tired of the drug!

Joan M · 05-10-2009, 05:24 PM

Di,

I stopped last year for a few months but then my muga score bounced back.

My muga wasn't below the bottom range (which I believe is 50) but it had dropped more than 10 percent between scans, and my onc said that such a drop in score is a reason to discontinue. She wanted to keep my heart good just in case I need to use more powerful chemo.

Joan