Herceptin 3 wks versus every week

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dibel
dibel Member Posts: 161
Herceptin 3 wks versus every week

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  • dibel
    dibel Member Posts: 161
    edited May 2008

    I recently finished chemo and started weekly Herceptin.  I think I've had 7 treatments now.  The Oncologist offered me every 3 weeks rather than every week.  I cannot find any documentation as to the efficacy of either option and was wondering if anyone here could shed some light on their experiences?  So far I'm sticking with every week because I thought the higher 3 week dosage might have more side effects and I've had enough of those from chemo.  Any thoughts?

  • henny
    henny Member Posts: 89
    edited May 2008

    My onc said there was a study to determine if 1 week was better that 3 week intervals. The results were that they were equally effective. As far as side effects-that's a good question. I had no se's until 8 months out when my nails started to get fragile and my MUGA went down for a while (just came back up). These side effects are also seen in those who got weekly infusions.

     I was happy to go every 3 weeks instead of weekly

    Henny

  • swimangel72
    swimangel72 Member Posts: 1,989
    edited May 2008

    I'm getting my Herceptin every 2 weeks. I've assumed the rationale is that the more frequent the dosing, the less strong it has to be - which means less strong SEs. But it could be that's the requirement since I'm getting Navelbine (a chemo drug) infused at the same time as the Herceptin. My onc explained all the studies to me and how this tx regime made sense - but I don't recall everything he said only that the studies show that Herceptin works best when it's given with a chemo drug rather than on its own. I hope I'm not adding to your confusion Dibel......I hope your onc can answer your questions regarding his tx plan for you!

  • dibel
    dibel Member Posts: 161
    edited May 2008

    Henny,

    I would sort of like the 3 week schedule as it would fit my schedule better and I hate going and being reminded of the bad side effects of chemo that patients are experiencing.  My question---do you have any side effects with the 3 week cycle? 

  • dibel
    dibel Member Posts: 161
    edited May 2008

    Good for you that you can get the Herceptin.  I can't ask you about side effects though because of the other drug you are taking.  I hope and pray you are doing well.  How much longer do you take the Navelbine?

  • swimangel72
    swimangel72 Member Posts: 1,989
    edited May 2008

    Dibel - the Navelbine infusions are supposed to last 4 months then I'll continue on the Herceptin for the rest of the year - and will also have to start on Arimidex (anti-estrogen pills). I'm not looking forward to the pills, even though they are the least invasive, because I'm reading about the arthritis-like joint pain SEs.....I already have some arthritis in my hands and hips, so I'm praying it won't get worse. Oh and as for any SE's with the Herceptin - to tell the truth, even WITH the Navelbine, the only SEs I've had (after 3 infusions) is a bit of tiredness and diarrhea which lasts about a day and a half. I'm supposed to get another Muga scan since the Herceptin can cause problems with heart function - but so far so good. I don't think you'll need to worry about any other SEs with Herceptin - from everything I've read - it's generally mild. You can check out this thread on the Her2support web site for more info, in case you haven't see it yet:

    http://her2support.org/vbulletin/showthread.php?p=162597#post162597

  • henny
    henny Member Posts: 89
    edited May 2008

    Hi Dibel,

    The early side effect I had was fatigue (tho I couldn't tell if that was from coming off chemo A/C and C/H or the recon surgery ).

    At about 8 months into herceptin I got short of breath, really fatigued, mouth sores, and crappy nails. My heart function went from 83% to 54% but yesterday it was back up to 69% and I feel much, much better. So much so that I'm off to the gym for a swim this morning. Don't know if there is much data on the difference in se's between 1 & 3 week infusions.

    I do have to say that these se's are nothing compared to chemo.

    Henny

  • henny
    henny Member Posts: 89
    edited May 2008

    One more thought is that I do recall my onc saying that those who have high blood pressure and are overweight are more likely to have cardiac problems with herceptin.

    Also even tho I had a decrease in my heart function it came back up while I'm still on Herceptin and I didn't do anything different except stop sprinting in the pool and stop spinning class.

    If anyone has a link to actual studies about this, I'd love to see them. Thanks

    Henny

  • dibel
    dibel Member Posts: 161
    edited May 2008

    Henny,

    Are you saying that you stopped exercising and the heart function improved?  I thought that if I exercised more, it would improve my Muga scan score.  That's why I've been pushing to get back to a normal schedule after chemo.  I was thinking that if my cardio improved, the heart function would too?  Am I wrong about that?

  • SpunkyGirl
    SpunkyGirl Member Posts: 1,568
    edited May 2008

    Dibel,

    I started Herceptin in December of '06 every three weeks for a year.  I worked out during that time, also believing that it would be good for me to continue to do so.  I didn't have any side effects from the Herceptin.  Personally, I think it's good to continue to workout when you are going through chemo, at least it worked for me. 

    Bobbie

  • henny
    henny Member Posts: 89
    edited May 2008

    I also continued to workout during treatment when I had the energy. When I didn't then I would just take long walks with my dog.

    I'm very lucky to have the ear of a cardiologist at work. He's the one who read my MUGAs. He said that he doesn't have a lot of experience with herceptin patients but in his practice he sees many with heart failure. My symptoms were similar in many ways to those with infections around the heart. For whatever reason (and with Herceptin it isn't very clear) the cells of the heart muscle have a hard time contracting the way they should. He said patients who had infections who were also type A runners and just had to get their endorphins from running had a higher incidence of not having the cardiac cells recover and had permanent damage. So he recommended that I continue to exercise when my EF was low but not to do really strenous exercise.

    I had many days when I was too tired to go to the gym before work so I would wear my pedometer and try to get my 10,000 steps in during the course of the day- and some days I didn't even get near that goal. The hard part was to tell myself it wasn't just because I was lazy that I couldn't do much and that I would be back to myself soon.This last week I do feel my energy returning. Only have 4 more herceptin infusions so I'll try not to overdo it til they are done.

    Hope you find the right balance. It's so hard not to be the way we were before the big C but at least we don't have to struggle through it alone

    Henny

  • mimi1030
    mimi1030 Member Posts: 700
    edited May 2008

    My mom is on weekly Herceptin, she does fine with it.  My mom doesnt like the 3 week regime, she gets too sick.  So she decided this time around she will do it weekly and she wouldn't have it any other way.  Of course my mom will be on herceptin indefinitely as she has mets and she is also on chemo weekly.  So for her weekly vs 3 weeks is a no brainer, why punish yourself with heavy 3 week doses when you dont have too.  My mom EF rate has remained unchanged since starting Herceptin in Sept 07.  She was 65% then and she still is today.  So, as long as all is well this way, she isn't going to change it up, even though she is not a fan of visiting the onc every week for 3 weeks, but she is well and not having any side effects.

  • henny
    henny Member Posts: 89
    edited May 2008

    Mimi,

    I'm glad your mom is doing well with the weekly regime. I suppose if I were to do it again and know I wouldn't have side effects I might go for the weekly too. Hind sight is 20/20 isn't it?

  • mimi1030
    mimi1030 Member Posts: 700
    edited May 2008

    I am glad that you are getting Herceptin Henny....it wasn't available for my mom back in 2004 when she was stage 1.  It often crosses my mind would things have turned out differently had she been able to get it then.  Your absolutely right about hind sight.

    Hugs,

    Michelle

  • noregrets
    noregrets Member Posts: 2
    edited June 2008

    Just signed up to chat room - I have been receiving herceptin once weekly with taxatere (12 xs)...today was my first dose at three weeks out - not sure what side effects, if any too expect... any thought on this - i am a wee bit nervous about this every 3wks vs. once weekly dosage...

  • GrammyNancy
    GrammyNancy Member Posts: 666
    edited June 2008

    I have been getting Herceptin weekly since the end of July '07, my onc feels that the way to do it (I only have 8 more!!!!!)  Only se that I've noticed are a drippy nose for a couple of days and I think my hair is growing slower.  I've got to say I was really dreading going every week but it really hasn't been that bad...in and out in about 45 minutes.

    Good luck to you,

    Nancy

  • shivansh20
    shivansh20 Member Posts: 4
    edited June 2008

    hi Ihave been getting herceptinwith AC since the april'08,i feel i dont hv any problem i think its better to take weely thn 3weely.....       thanx bye

                                     

  • atdec05
    atdec05 Member Posts: 37
    edited June 2008

    I did a year of Herceptin - the first 6 months weekly, then my oncologist gave me a 3-week dose so I could go on vacation. I noticed I felt slightly more achy and had flu-like symptoms for about an hour or 2 after the treatment, as compared to about 1/2 hr. after the weekly treatment. I had one more 3-week treatment around the Dec. holidays. I'd say if your schedule permits, go weekly, but if you need to go on vacation or whatever, hopefully you'll have some flexibiity to do a 3-week dosage.

  • bwuerthele
    bwuerthele Member Posts: 8
    edited June 2008
    I was on Herceptin weekly while getting Taxol (12 weeks) and just got the 3 week dose with the last chemo this past friday.  I'll continue going every 3 weeks.  So far I haven't noticed a difference from the weekly Herceptin, but its only been 5 days.  I was lucky and tolerated the Taxol and Herceptin rather well (except for some fatigue - but I also have a 4 month old, he has something to do with that Smile) so I hope that continues.
  • BethNY
    BethNY Member Posts: 2,710
    edited June 2008

    It's hard to believe that next month will be two years since completing my year of herceptin.  I started on the weekly, and b/c I wanted to have my port out to show off my breasts, the weekly regimen was rough on my veins.

    The BEST part about going every three weeks, is that you totally get to reclaim your life.  I truly feel that the three week regimen makes the transition into moving beyond cancer smoother.

    If your onc offers the three weeks, my advice is to absolutely go for it!

  • vineyardgirl
    vineyardgirl Member Posts: 2
    edited July 2008

    Just finished my 15 cycles of Herceptin over the course of 42 weeks.  I went every 21 days (3wks) and definately had some joint pain, mainly after sitting for a while, but certainly nothing that was bad enough to keep me down. I take" tylenol brand for arthiritis" and it works great, totally minimized the joint pains for me.  This was the way to go for me, because I didn't have to have cancer on my mind  every week.  My infusions were thru a port & about 3-4 hours long - I enjoyed the long nap.  Good luck!!

  • BethNY
    BethNY Member Posts: 2,710
    edited July 2008

    3-4 hours for herceptin?  Wow.  I did the three week plan, and the infusions were 90 minutes. In and outl.

  • bwuerthele
    bwuerthele Member Posts: 8
    edited July 2008

    Gosh, my three week plan only takes 30 minutes!

  • coonie
    coonie Member Posts: 7,618
    edited July 2008

    I finished chemo in March and have been doing Herceptin every 3 weeks. It's worked great for me. No side effects either! However, I started on Arimidex in May, and I think that is causing some side effects. Every 3 weeks is just much more convenient than every week. Good luck!!

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