Changed my Herceptin..question

Sherryg683 · 10-18-2007, 09:18 PM

I've been taking Herceptin now for almost 2 years on the weekly cycle. I had some trouble for the first year tolerating the side effects, headaches, crusty nose, the usual. I met with my oncologist on Tuesday and he agreed to continue it for as long as I wanted but we decided to go on the 3 week schedule. I was ready for a break, I got the triple dose. For the last 2 days, I have felt HORRIBLE. I can hardly pick my head up off the pillow in the morning, head is aching terribly and my body just aches. I really was looking forward to not having to go in every week but I sure don't want to feel like this every month. For you 3 week gals, is this normal and do you all adjust? I'm thinking I may not be able to tolerate the triple dose and have to go back to what I was doing weekly...sherry

Sheila · 10-18-2007, 11:16 PM

Sherry
You probably won't see this until morning, I am on a Decadron high....I always had Herceptin every 3 weeks until lately...now I am on every 2...both have been fine for me. You must see what your body tolerates best...I would give the 3 week dose another try.

tousled1 · 10-18-2007, 11:22 PM

Sherry,

You are probably feeling the way you are because you most likely got a loading dose since you are switching to the every three week schedule. Give it a try as it does make your like simpler. I know that when I went on the three weeks regime I had to get a loading dose and didn't feel too great but then after that my infusions every three weeks only took 30 minutes. Other than joint pain I was fine. Hang in there

Becky · 10-19-2007, 03:46 AM

I switched from weekly to the every three week. You do not get a loading dose but you do get 3X the amount of drug than you did before which is just as large as the loading dose for the weekly. You will adjust. I regreted the switch at first for the same reasons as you but then it became the same as the weekly except there was freedom to go away - not shackled to the cancer center.

Everyone is different though. If after your fourth triple dose you are still feeling lousy - you can always switch back to the weekly.

KRISS · 10-19-2007, 04:47 AM

I remember when I first switched I noticed some headaches and more joint ache than before, but after a couple they lessened and now most of the time I am just fine. Just those pesky boogers! Yuck. Who would of thought one of my worse side effects of cancer would be boogers. lol But like Becky said give it a try and if it does not turn around for you swithc back.

caya · 10-19-2007, 06:37 AM

Hi Sherry,

I have always been on the every 3 week schedule of Herceptin - I've had 7 infusions. The first one was the loading dose, given over 90 minutes. Then they switched me to 30 minutes, and I was very nauseous, headachey, very tired. Some of the women suggested slowing down the infustion to 60 or 90 minutes, my onc. and the onc. pharmacist agreed to try - what a difference for me. I now do a 60 minute infusion every 3 weeks. I still am a bit tired for the first 3 -4 days after the infusion, but nothing I can't live with.
Also for me the joint aches have calmed down considerably - but for me I think these aches were also impacted by starting Tamoxifen one month after starting Herceptin - my poor body was hit with a double whammy. I took a lot of Naproxen for a number of weeks, but now I hardly every do.
I would try the 3 week cycle for a couple of more times, as Becky and Kriss said, you can always go back to the 1 week schedule.

all the best
caya

Brenda_D · 10-19-2007, 07:30 AM

I've always been on the 3 week schedule. Right after infusion I have headache, runny nose, blah draggy feeling for a few days.
But now the bone pain is getting unbearable, and I'm not sure if it's the H side effects or arthritis, or a combo. I go to see my GP today and see what she thinks.
I get a 90 minute infusion each time.

10-19-2007, 10:48 AM

Sherry,

Sorry you're having so many issues with three-week herceptin. I can't comment on my first dose as it was included with taxol and carboplatin--and it was hell.

However, after chemo I continued with the three week dose, and aside from usual suspects: cough, running nose, swollen feet and ankles and some shortness of breadth, I found it relatively easy.

I'd said give it at least one more try, as it's lots better than interrupting your life once a week. Also, easier on veins if you don't have a port.

Jean · 10-19-2007, 11:34 AM

Sherry,
Sorry that you are feeling strong effects..give your body time to adjust.
I did the 3 week herceptin and it was fine. Still had the crusty nose,
the joint aches /muscle cramping...but you body adjusts.

Wishing you the best,
Jean

Sherryg683 · 10-19-2007, 01:33 PM

Thanks all. I am feeling much better today, 3 days out. I actually woke up and didn't feel like I was hit by a train. I guess I can tolerate it if it only lasts 2 days. I'm just one who doesn't like to just sit around. It's so hard for me to just sit and relax. Yes, the boogers are terrible for me also..lol...sherry

BonnieR · 10-19-2007, 01:50 PM

Sherry, I'll have to let you know. I just began Herceptin alone this week. Had been taking THC and had heavy duty side effects. Will be interested to see how I adjust to the change. Right now just feeling some aches. Glad to hear you are sounding better.

Joanne S · 10-24-2007, 10:15 PM

Sherry, I have been on the 3 week cycle for over 10 months now. I am very fortunate I don't have any significant side effects from the Herceptin. However, when I first started Chemo, a little old lady at Chemo suggested eating and drinking all the while during infusion. I think it really helps. You may want to give it a try. How long or over what period of time did your triple Herceptin infusion last? Perhaps if they slowed it down, the side effects might lessen. Best to you.

nitewind · 10-25-2007, 05:45 AM

Sherry, When I first started herceptin, I was on the three week dosage. I found that I didn't tolerate it very well and asked my onc if I could just try the weekly dose to see if it made a difference. I've been going weekly since last January. Yes, it's a pain in the butt to go every week but I honestly have no side effects. What makes it a lot easier for me is that I live about a quarter of a mile from my infusion center and I walk there every Friday. I know it would be a lot harder if I had to drive a good distance. But, for me, this works well, it's almost as if I'm not having any treatment except for the inconvenience and I can handle that.
The best thing to do is try it and see what works for you.
Prayers for you.
Hugs

Sherryg683 · 10-25-2007, 09:39 PM

The bad feeling lasted for about 5 days. I'm going to give it another try and if I feel that bad, Im going to go back to weekly. I just live about 5 minutes from where I get chemo, so travelings not an issue. My infusion was 45 minutes, I'm going to see if that makes a difference. ...sherryg

kk1 · 10-26-2007, 08:52 AM

Hi Sherry;

you should be getting it over 90 minutes!....one time they made that mistake and did it faster and I felt soooo tired for several days that I could barely get out of bed. I now double check the pump rate myself.The nurses are in such a habit of setting for weekly at 30minutes that it is just automatic for them to put in the faster time without thinking that it is a triple dose.

kk1

Senorina · 10-26-2007, 03:35 PM

Hi, Sherry
I just completed my one-year Herceptin program last month. I was on the 3-week schedule too. It was harder in the beginning, but did get better. Your body will get used to it. I had a harder time with Decadron. Taking Claritin every day for the first week helped. Unfortunately, I continued having problems with nasal congestion for the year, but that is now going away. Hope this helped.

kareneg · 10-26-2007, 06:17 PM

Hi Sherry,

I am glad you are going to give it another try, I have been getting my herceptin every three weeks for a long time know. And some treatments are better than others why I have no clue. But I pray you can tolerate the triple dosage for it is a lot easier going there every three weeks. If not talk to your doctor and go back on the weekly treatments. Please keep us posted on how you are doing. You are in my thoughts and prayers.

jml · 10-27-2007, 06:27 AM

Hi Sherry~
Hang in there w/the q3week Herceptin dose! It is sososo nice not having to go to the infusion center EVERY week.
I had been on the qweekly dose after finishing the 1st year of chemo, but found I couldn't tolerate the q3week/30min dose either - SO SORE! I felt like I had SEVERE arthritis from my skull to my tailbone and flu'ish too.
I eventually switched back to the qweekly dose.
BUT, when I switched Onc. & began treatment at a new center, I tried the q3week dose over 90 mins (that's the standard protocol @this new place. i asked if they could run the infusion over 30 mins & they said No.) and I've tolerated it really well.
No more severe arthritic pain, still mildly flu'ey w/in 24 hrs, but a couple of tylenol takes care of that.
I don't know if it's the slower, longer infusion time or the fact that I've been on maintenance Herceptin since 2003 & I've just adapted to this dose, but I much prefer the freedom of this schedule. (Unfortunately, that's changed as I've had to resume chemo for a couple of naughty supraclavicular nodes...)
Hang in there, try a slower, longer infusion as well as the other helpful suggestions posted here.
Hope your next time around is more tolerable!

Prayers, Faith & Courage~