Weekly Herceptin-alone instead of every 3 wks (after chemo/H)

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lovemygarden
lovemygarden Member Posts: 342

Although most HER2 chemo regimens move to getting the Herceptin-only phase on a schedule of Herceptin-alone every THREE weeks for either 60 or 90 mins, has anyone done it on a continued WEEKLY 30-min drip instead, and if so did it avoid/minimize/resolve any side effects for you?

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  • mthomp2020
    mthomp2020 Member Posts: 1,959
    edited April 2010

    I had no SE's at all from Herceptin, even the first loading dose.  The only real Se is a bit of a runny nose, and my nails are brittle, but that would probably happen even with the weekly dose.  I've been on it now for over 2 years.  Why not try it every 3 weeks?  Since you've been on it already, it won't be a big shock to your system.  I've never taken Benedryl while on just Herceptin.  I know some people are given it, but I don't think it's really necessary in most cases.  Even people who have a reaction from their first dose seem to be fine after that and no longer have any reactions with the rest of their doses.

  • lovemygarden
    lovemygarden Member Posts: 342
    edited August 2010

    Well, for one thing I am very pro-active about avoiding SEs entirely if possible, rather than having to figure out how to deal with them after the fact. My baseline MUGA was only 60% which doesn't give me a lot of wiggle room for an ejection-fraction drop; and as far as the other notorious SEs (fatigue, flu-like symptoms, nail damage which often doesn't show up till late in the game and/or after finishing Herceptin) my philosophy is "If it ain't broke (on the weekly regimen), then don't fix it.'

    I never got the full standard initial loading dose of Herceptin because I had a serious reaction to the Benadryl that was given to me first and my BP took a long time to recover afterward.  They gave me a somewhat lower dosage and slowed it down to 120 minutes. For the second Herceptin, with no Benadryl, I got a bit more than the standard 30-min dosage but slowed down to 50 mins. It was only at my 3rd weekly that I got a 30-min dose at the normal rate.

  • maryannecb
    maryannecb Member Posts: 1,453
    edited April 2010

    I declined the benadryl after the TH was done...continued with every 3 weeks H..no trouble at all..really. EF of 60 well within normal and far from 50..this number doesn't start at 100.

    I can see being wary...but every time you go to a med setting run the risk of infection from others...it was sweet to be lesss in the chair...why not give it a try?

  • coss
    coss Member Posts: 48
    edited April 2010

    I also worried about switching to the 3 week Herceptin regimen after Taxol.  I'm glad I did it though.  I had no side effects, cardiac or other, no premeds and was in and out of there in an hour.  I got my life back. You might want to try it. 

  • FCB
    FCB Member Posts: 21
    edited April 2010

    Hi lovemygarden,

    I get weekly Herceptin over 30 minutes.  I "weaned" off the Benydryl after Taxol was done, and now just get 2 Tylenol before my infusion.  My onc refuses to go to every 3 weeks, likes the weekly dose.  I do too actually (hooray for my port...and iPod!)  :)

     My possible side effect has been the runny nose which I have had all my life anyway.  MUGA experience: EF started at 79 and is now 71 which they tell me is excellent.  I've completed 27 Herceptins, more than half done!  I feel better and better everyday after all that chemo and radiation.  If you have the time, a port, and the infusion room doesn't bother you, I'd say weekly infusions are a piece of cake.

     Best wishes to you!

  • Sassa
    Sassa Member Posts: 1,588
    edited April 2010

    When I started the herceptin only part of my treatment in February 2007, I was on the weekly dose until July 2007.  In July, I switched to the one every three week regime.  Although the dosage for the three week regime was higher  than the weekly treatment, I was surprised to find that some of the side effects were less and my hair started to grow faster.

    When I mentioned this to my chemo nurse, she wasn't surprised and told me that the one every three week dosage was less herceptin than the  sum of the three weekly dosages (this would be true for anyone on the weekly vs the every three week regime).  She pulled out my dosing records and proved it to me.

    It was than that I understood why my oncologist was insistent that I take herceptin weekly for at least three months before switching to the one every three week regime.  She treated my BC aggressively because she felt that it was better to hit it as hard as possible at Stage 1 to try and prevent any recurrence.  She obviously wanted me to have the advantage of a higher dose from the weekly infusion.

  • sheila888
    sheila888 Member Posts: 25,634
    edited April 2010

    I did weekly Herceptin for 52 weeks.

    The first 4 was given to me with Taxol.

    No SE at all and the hair grew normal.

    Sheila

  • Soccermom4force
    Soccermom4force Member Posts: 631
    edited April 2010

    weekly here..after completing DD AC/T in June 2005, I elected to have 52 weeks in the hopes of minimizing risk to my heart. (I also have significant family history of CAD). I had minimal SEs and ejection fraction stayed in the 60's.

    Warmly,Marcia

  • weety
    weety Member Posts: 1,163
    edited April 2010

    I was wondering about the different dosages as well!  Except my dosages went the other way--I was getting 90 mg herceptin weekly (90x3=270) but now that I'm on the 3-week doses, I'm getting 300 mg.  I've wondered about this over and over, but no one seemed to be able to explain it to me--several of the onc nurses I asked just gave some vague answer about it being different amounts because your body can handle different toxicities based on the time frame. Hmmmm....now I'm even more curious!  I would have expected it to go more the way Sassa explained in the above post.

  • Sassa
    Sassa Member Posts: 1,588
    edited April 2010

    Weety,

    I don't understand either.

    My dosages were the reverse of yours, 100 mg per week (total of 300 mg over three weeks) vs the 270 mg every three weeks).  My chemo nurse said my dosage schedule is typical of weekly vs three week dosing (It has to do with drug half life and maintaining a therapeutic blood level).

  • weety
    weety Member Posts: 1,163
    edited April 2010

    Sassa, if you don't mind me asking, are you on the petite size?  I'm just about 100 lbs.  I'm figuring since we both have those 300/270 amounts we might be similar in size? This whole thing is weird!  I wonder why mine are the opposite???  Maybe I'm getting too much now that I've gone to the 3week cycles.

  • amlg1
    amlg1 Member Posts: 596
    edited April 2010

    I'm getting herceptin every 3 weeks,absolutly no side effects,MUGAS have been fine.

  • azsunn
    azsunn Member Posts: 201
    edited April 2010

    I did the weekly Herceptin protocol for the entire year with no adverse reaction. 

  • lovemygarden
    lovemygarden Member Posts: 342
    edited August 2010

    I do have a port, and truth be told I'd much rather be in the chair for 30 minutes each week than 90 mins every three. The total chair time in the end would be the same for either protocol, since I already know that I would absolutely not agree to let them push a 3-week dosage over only 60 mins.

     weety, I'm 108 lbs and 5' 4 1/2" tall, so am not hefty either by any means. I don't know my current dosage but plan to ask the nurse this week.

     soccermom, I too have a strong family history of CAD. Both my parents died of it, and my cholesterol is a bit higher than normal (216 total, 143 LDL) even on a low-fat, almost-no-cholesterol diet (I refuse to take statins). Before changing my diet, it was 300 total and 199 LDL. My body just naturally makes more cholesterol although at this point my ratio is still good.

     A question only for those on the weekly Herceptin-alone protocol: Did you experience any changes or damage to your fingernails or toenails either during the Herceptin-only phase or after it was all finished?

  • sheila888
    sheila888 Member Posts: 25,634
    edited April 2010

    Yes and yes.

    My 2 big toenails were almost lost. In time they got normal.

    My fingernails were so thin and ridged they used to break it right in the middle.

    I used to cover them with band aid. Now they are strong but the ridge never went away.

  • LouLou40
    LouLou40 Member Posts: 180
    edited April 2010

    Only 2 more Herceptins left for me.

    I have had it every 3 weeks over 90 mins, no premed, no side effects, much more convienient for me than weekly.

  • lovemygarden
    lovemygarden Member Posts: 342
    edited August 2010

    seyla888, that's interesting; so you did have a SE from the weekly Herceptin after all. Question: At what point(s) in your treatment did the nail issues occur?

    I am currently using the frozen gloves and slippers to try to avoid/minimize nail damage from the Taxol portion of the treatment.

  • Beach
    Beach Member Posts: 127
    edited April 2010
    Coming up to my 2nd last Herceptin....tx cycle has been every 3 weeks and each dose, (except the first one), has been given over 30min, with no Benedryl.  My chemo regimen was supposed to be 3 x FEC (every 3wks) and 3 x Taxotere (every 3wks) + Herceptin.  Hair all gone by 2nd FEC and lost every nail on my hands and feet after receiving only 2 Taxoteres; 3rd Tax was cancelled due to toxic reaction from the first two.  Nails and hair have all grown back while receiving Herceptin and my LVEF has bounced from 60 to 57 to 67 to 56, all considered in normal range.  The only se's I can attach to Herceptin are the runny nose, blood in nose, a little fatigue and maybe slower hair growth.  The taxanes can be extremely harsh on our system and the se's can show up months and months later.   
  • kimber3006
    kimber3006 Member Posts: 586
    edited April 2010

    I noticed this thread last night, and as I had my first triple-dose of Herceptin this morning, I paid attention.  Last week with my last weekly Taxol my dose was 135.  This week for my first triple-dose it was 404, so almost exactly triple the dose.  I was down one pound so even that minute difference makes sense.  When I asked if there was ANY reason to do weekly over the 3-week dose, my onc said the only real difference he's seen is that some on the 3 week schedule seem to complain of fatigue, but that otherwise I shouldn't see any difference whatsoever (of course, he may have been addressing my unique case rather than an opinion on all her2+ cases overall?).  I'm all for getting stuck 2/3 less often! 

  • weety
    weety Member Posts: 1,163
    edited April 2010

    I'm wondering about that fatigue that your onc mentioned.  I had felt like I was slowly getting back to normal after chemo, but now that I switched to the 3-weekly dose, I'm back to being exhausted all the time.  I felt best during my 6 week herceptin break during radiation.  Maybe some of us are just more sensitive to the difference in amounts than others. 

    I still wonder why we are all getting different amounts though.  I would have thought there would have been a standard "so many mg per pound" that every facility went by.  Does anyone know about that?

  • FCB
    FCB Member Posts: 21
    edited April 2010

    I haven't had any side effects with my nails since Taxol when they got a little brittle.  Now they're back to normal! 

  • candy14510
    candy14510 Member Posts: 165
    edited April 2010

    Hello Ladies, on weekley herceptin since sept, when I started taxol.  Taxol was fine until week 8 of 12....nurapathy bad, nails sooo brittle, joint pain....then the kicker loosing your lashes and brows AFTER you are done with it. My onc insists on weekly(a constant level stays in your body)...I go to the U of Minn, she hit me with everything for my stage 2b....rads after taxol. My liver counts got high after rads...so I couldn't take herceptin for 4 weeks....I was concerned about that...but she told me in Great Britian, studies have shown that taking only 15 weeks of Hercepitn reoccurance was not really differnt the taking 52.  Now I want my 52...but made me not feel so bad about missing the 4 weeks. I have noticed SE....joint pain...like arthritis....feet, ankles, knees, hands.  I thought is was still taxol, but a BC sister finished taxol same time as me and doesn't take hercptn and she is feeling fine) I missed 2 weeks and it got better. my onc said 6-8% have that SE.  Great, i'm trying to get back to normal and I'm the 6-8%!!!  I am training for a 1/2 marathon in June...it's been hard.  One thing I noticed last week was my WB count was kinda low...4.2 and in Feb it was 2.8....I got sick and didn't know if I should panic, like they told us while on chemo...and my onc said that herceptin will lower your WB count and you should still be cautious!!!  I have noticed more fatigue too...sleeping  later....weird!!! Only 26 more weeks to go!!!!

    Sorry what is EF? I saw some said what it stands for...but I've never heard of it.  I get weekley blood panels to monitor my liver levels, also heart echo every 3 months.

    Thanks, Polly

  • lovemygarden
    lovemygarden Member Posts: 342
    edited August 2010

    EF = ejection fraction. It's what the MUGA scan or echo monitors.

    Btw, I get a little aching  in my ankles, wrists, knees and shoulders during the 12-18 hours immediately after my weekly infusions. It's manageable with Tylenol and of course the knowledge that it will be gone by the following night.... but I don't want to find out how much worse it would get as a result of a 3-week-size dose.

  • suzieq60
    suzieq60 Member Posts: 6,059
    edited April 2010

    Weety911: Why did you have a break from herceptin while doing rads? I'm not, in fact I have rads today followed by my 3 weekly herceptin treatment. I've got 2 treatments while undergoing rads and they have scheduled my rads so I can go straight upstairs for the infusion.

    Sue

  • Melinda41
    Melinda41 Member Posts: 672
    edited April 2010

    Onc nurse told me today that the weekly dose is 2mg/kg body weight and the 3 week dose is 6mg/kg body weight. (At least I think that is what she said, chemo brain kicking in). She said the bag is not bigger, just more concentrated. No premeds needed as my body had already built up tolerance to the H during the T/H phase.

  • Leslie1962
    Leslie1962 Member Posts: 233
    edited April 2010

    Melinda41 - At my last chemotherapy today I received the first of an every three week regimen of Herceptin (I had previously been receiving it weekly for the last 11 weeks). My infusion nurse told me exactly the same thing as what you stated.

  • candy14510
    candy14510 Member Posts: 165
    edited April 2010

    ok...I am so sorry but why have I not heard of a MUGA scan or Enjection Fraction? I get a heart echo....but have never heard of EF or MUGA!!!!

    Polly

  • lovemygarden
    lovemygarden Member Posts: 342
    edited August 2010

    I asked the chemo nurse today what my current (weekly Taxol/Herceptin) Herceptin dose is, and she said 98 mg. That is weight dependent of course, but I don't get weighed either; guess they just go by whatever your 'start-chemo' weight is; mine was 108, and I've kept within 2 lbs of that so far.

    Polly, some oncs prefer to use MUGA scans while others are satisfied with the heart echo (insurance companies probably have some input too, because the MUGA , being a 'nuclear' test, is more expensive than an echo; full self-pay price for a MUGA in my area ranges from $750 - $950). The difference between them is the results, the MUGA being more accurate because it measures the ejection fraction down to 1/10 of a percent.  My onc prefers to monitor Herceptin cardio effects very closely and thus prefers the higher sensitivity of the MUGA. 

    The ejection fraction (sometimes written LVEF = left ventricle ejection fraction) is the measurement of how strongly your left ventricle pumps blood out of your heart. Normal is either a 50% or 55% minimum, depending on what radiologist/cardiologist/oncologist you are talking to; I have both quoted equally often! Herceptin can affect the strength of the left ventricle and that's why the EF is monitored, either by an echo or the MUGA (which is considered the 'gold standard'' of measuring the EF).

    I agree with my onc that the MUGA is preferable, even though I'm self-pay and the echo would be cheaper. 

  • candy14510
    candy14510 Member Posts: 165
    edited April 2010

    Lovemygarden - thank you I will ask next week....I wonder if it's becasue ever since i started nothing has changed in my heart I mean....In a year I've had 6 echo's, next is  scheduled in 2 weeks. I've even met with a heart spec becasue of high BP?!?!?! Interesting....she has never held back on any ct's or mri's....I will defientaley ask, since it seems you all have had the MUGA!!

    Thanks!!!

    Polly

  • lovemygarden
    lovemygarden Member Posts: 342
    edited August 2010
    It's interesting that you mention higher BP, because I'm starting to get a little concerned about mine. I have always been between 110 and 118 over 70 to 80, except in high stress doctor situations when it sometimes went into the mid 120s. But at every pre-chemo reading they've taken, it has ranged from the mid 130s to the mid 150s! Frown At first I put it down to anxiety but this week was #6 and by now I know the chemo is no big deal... yet it was 148/85 when I went in. I asked the onc nurse to retake it during my Herceptin drip and it was down to 133 but that's still not normal for me. Unfortunately I don't have one of those BP things at home to check it, nor do any of my friends. So I do wonder if either the Taxol or the Herceptin is raising my BP. What did your heart specialist think?

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