Herceptin weekly or every 3 weeks

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mom_of_2
mom_of_2 Member Posts: 347

I only have 3 more infusions of Herceptin but am getting triple dose so oncologist counts as 9 cycles. I had no side effects when I was getting weekly infusions. Now that I get triple dose my heart function is down, I have mild reflux in 2 valves, exhausted, nails are a mess etc! Has anyone had such bad side effects that they went from triple does down to single does weekly? If yes...did it make a difference?

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  • lexislove
    lexislove Member Posts: 2,645
    edited April 2009

    I've never heard of triple dose Herceptin.

     I would think either they would then administer the Herceptin to you single dose weekly or every 3 weeks untill your heart function is ok.

    OR....they would wait for your heart function to go back up and then continue.

    Congrats on almost finishing though!!!! Next thing...PORT OUT...~8* BTW..it feels sooo good*8~

  • REKoz
    REKoz Member Posts: 590
    edited April 2009

    Hi Mom-

    I have been getting Herceptin weekly along with my chemo since Jan. I have 2 more chemo's to go. Should have been one but unfortunately yesterday, my platlets and RBC was too low for chemo. They did give me Herceptin though. I'm interested in what you have to say because once chemo is done, the plan is for Herceptin every three weeks. In other words, just like you going from weekly to once every 3. I'm sorry that that dosage has you now feeling bad effects. What does your Onc. say about it?

    I have no idea how I will handle it but I was assuming it wouldn't be a problem. Most everyone is on every three with no problem. Could it possibly have to do with infusion time? I've read where some woman had some trouble and they just slowed the drip.

    Hoping you'll continue to be OK on Herceptin, I don't know that I'd want to keep going every week once I'm done with chemo.

    Best of luck to you,

    Ellen

  • mom_of_2
    mom_of_2 Member Posts: 347
    edited April 2009

    Triple infusion is given over 90 minutes but I will check to see if they can slow it down. I thought I was tolerating it fine because I switched to triple dose back in November. Had my 12 week echo and they almost didn't give me my herceptin last Tuesday because of heart function. I wanted it because I'm almost done and can see the light at the end of the tunnel. Onc gave the ok as long as I follow-up with her. I have felt terrible last couple of days...exhausted like I was getting chemo again. I am willing to get weekly infusion IF it would help me feel better. I know energy is gone due to heart function. I don't want further damage but I am so close to being done and getting this port out of my chest. I hope to be able to push through without a break.

  • LittleFlower
    LittleFlower Member Posts: 405
    edited April 2009

    Mom of 2,

    i did my first 12 weekly with taxol, then started the every 3 week dose. I had headaches after infusion that would last for 2 -4 days.  About half way through, i asked onc for weekly dose.  Once i did that my headaches were much better.  I really did feel better when i did the weekly dose.  So i am a believer.

    Good luck with finishing your last few doses!

  • Estepp
    Estepp Member Posts: 6,416
    edited April 2009

    I just started the the triple dose.. every three weeks. This is normal treatement after rads and or surgery...

    I have only noticed that I feel more arthritic now. I have to take more time getting up and around.

    I was told last Monday that if the Side Effects are worse.. that you will need to take the pre-meds. I am not wanting that as I had a terrible time during chemo with the steroids. But if you are having these terrible side effects.... ask about the premeds...

    God Bless.. PM me anytime and I can go into more...

    Laura

  • swimangel72
    swimangel72 Member Posts: 1,989
    edited April 2009

    My Herceptin was given to me every TWO weeks right from the beginning (since last April)..........and I never had a problem until about a month ago. I believe my body is just tired of it now..........my muscles ache, my fingernails are a mess,  and my bones hurt (even the bones in my feet - but I am blaming that on the Arimidex). Mostly I'm very tired and coughing. My onc gave me an antibiotic which did seem to help a bit, but I haven't had a muga scan since January (it had dropped just a bit, down to 63% which is considered very good.)  I only have one more Herceptin tx left (next Wednesday, the day after my colonscopy) - and I can't WAIT! I don't have a port any more - it got infected after only two infusions and had to be removed. I've been very lucky that the nurses were able to infuse the Navelbine without burning my veins - the Herceptin is VERY easy through the veins, not dangerous at all. My onc will probably request one more muga scan after my last infusion - but to be on the safe side, I made an appointment with a cardiologist in May to have a complete workup done on my heart. I've been to so many specialists already - it suddenly dawned on my - my heart has been through so much this past year - a cardiologist will give me peace-of-mind moving forward.

    Mom-of-2 I hope you feel better - but be sure to tell your onc everything you feel - even if it means delaying your Herceptin another week - your heart is so important for your future health - better be safe than sorry!

  • lexislove
    lexislove Member Posts: 2,645
    edited April 2009

    Ohhhhh...triple dose is the every 3 week thing!

    I didn't underdtand all the lingo...lol. Ok, that is what I did as well.

  • mom_of_2
    mom_of_2 Member Posts: 347
    edited April 2009

    Swimangel...

    Thanks I have an email into onc and I am requesting that we go back to weekly infusion. I am also being referred to a cardiologist. I am not concerned about the heart function because I know that will recover in time once I am off of herceptin. I am worried about the mild mitral and tricuspid regurgitation. I think a cardiologist would give me good piece of mind. You are right and I will delay herceptin if needed :(

    LittleFlower...

    Thanks...headaches have been awful. I hope they go away with weekly infusions.

    Estepp...

    I have never gotten pre-meds...my chemo didn't require it either. My oncology nurses said pre-meds are worse than herceptin plus I want to take as few drugs as needed. I hope you don't have any prob with triple infusion.

  • ncchick
    ncchick Member Posts: 7
    edited July 2009

    I am getting Herceptin every 3-weeks but I am wondering if the drip is too fast.  I have had horrible side effects for the past 3 treatments.  How long does the 3-week drip take for the rest of you? 

    I would like to have some information for my onc.  Many thanks.

  • kim40
    kim40 Member Posts: 904
    edited July 2009

    I'm starting Herceptin next week - and go once every 3 week.  How long does the infusion usually last?

  • GramE
    GramE Member Posts: 5,056
    edited July 2009

    I will have my last of the every 3 week Herceptin next Thursday.   They slowed the usual half hour drip down to one hour and added a bag of saline at the same time.  No pre meds.   I had chills and dizziness and the slower drip with saline works very well for me.   I drive myself to and from tx, but the first night I get bone aches and take tylenol 3 to sleep.   I did have taxol and herceptin every week for 12 weeks and got pre meds, which knocked me down for 2-3 days.   

    If I were just beginning herceptin, I would not be looking forward to cumulative effects of bone aches and stiffness.  But, since only one more to go, I can see an end to it.  Going up and down stairs is actually painful.  

    Discuss the longer drip time with your onco.    

  • juniper
    juniper Member Posts: 110
    edited July 2009

    I get herceptin every three weeks.  My infusion takes about 90 minutes.  I get tylenol for pre-meds.  

  • Brenda_R
    Brenda_R Member Posts: 509
    edited July 2009

    When I was getting Herceptin, it was every 3 weeks and it was given over 90 minutes.

  • kim40
    kim40 Member Posts: 904
    edited July 2009

    Thanks Ladies.

  • ncchick
    ncchick Member Posts: 7
    edited July 2009

    Following up with all of you great folks!!!

    On July 8th I received my triple dose of Herceptin,.  Only this time they gave it to me over 60 minutes.  The difference was astonishing. 

    I absolutely had NO side effects at all for 13 days.  Then the drippy nose started along with the body pains and the inability to wind down at bedtime.  But it was truly remarkable to have the relief that long!  Oh, and another benefit...with the triple dose over 30 minutes my magnesium level was dangerously low,  in the low 1s. Now it is 1.6.  1.8 is the bottom of the normal range.

    So I am excited about this progress!  I go on Wednesday, the 29th and plan to get it over 90 minutes based on your input. 

    BTW I only get tylenol as a pre-med and have never received a bag of saline fluid before the Herceptin. 

  • abbyglp
    abbyglp Member Posts: 417
    edited July 2009

    The first time I was on herceptin for a year, the cardiologist put me on a low dose BP med. lisinipril. It made it so that your heart does not have to work as hard and it stopped the once in a while palpatations that I got from the herceptin. I am back on the once a week herceptin and chemo now, but the doc wants to put me on the 3 week schedule after I go on a chemo break. I will definetly want to go back on the blood pressure med lisinipril again if I do that.

  • Voltie
    Voltie Member Posts: 7
    edited July 2009

    When I was getting my chemo treatments, I had Herceptin weekly for 30 minutes.  When I completed chemo, I then started to go every 3 weeks - 90 minute infusions.  After that, I started to get joint pain; which I never had previously.  My MUGA always was good, until this last time. My clinic changed hands, so now the new clinic was giving my my Herceptin that I usually had in 90 minutes down to 30 minutes and my my MUGA went down to 53%.  I was very disappointed. My onc has now d/c my Herceptin treatments.  I only had 3-4 more treatments.  I hope it doesn't come back to bite me in the XXXX/, 

  • ncchick
    ncchick Member Posts: 7
    edited July 2009

    Voltie, they say your heart ejection fraction will go back up after you stop the Herceptin.   Mine went from 65% + to 53% in the first 3 months.  So I am pulling for you!

    I did pretty well on July 8th when I received my Herceptin because  I got it over 60 minutes.  I had not arthritic pain, drippy nose or wakefulness at bedtime.  Then about 13 days later it started and I ached from the tips of my fingers and to the tips of my toes.  I take Tylenol during the day and benedryl at night.  Today I get doses 43, 44 & 45.  I will ask to get it over 90 minutes.  

    I didn't know that the Herceptin would need to be given again.  Did they tell you why?

  • Aliceann
    Aliceann Member Posts: 62
    edited July 2009

    Well, my case is a little different as I have been on Herceptin for about four years and the three week treatment is working out.  My onc. nurses always include a saline drip before and after the completion of the Herceptin.  I do have to remind them to slow the infusion down as I truly do think it makes a difference.  Having a good breakfast prior to the infusion seems to help me out as well.  I drink lots of fluids during and after the regimen. 

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