2009 Herceptin group

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  • AmyIsStrong
    AmyIsStrong Member Posts: 1,755
    edited August 2009

    I have my first Herceptin-only coming up on Thursday so I haven't done one yet. But the nurses all encouraged me to 'deny' the benadryl, saying that I don't need it and it will just make me sleepy (which it DOES) the rest of the day. On chemo days, it didn't matter, since I was there all day, but with H only , I will be done quickly and want to work the rest of the day.

    That is the only pre-med they were planning, so since I denied it, i will just get straight up Herceptin ONLY.

    I'll let you know how it goes.

    Amy

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  • o2bhealthy
    o2bhealthy Member Posts: 2,101
    edited August 2009

    I have had 2 Herceptin only and no premed's.  I get a headache within a 1/2 hour of the infusion - I take Tylenol or Ibuprofen and it is only a dull ache.  Love that I am in and out within an hour and can go on with the rest of my day. 

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  • helena67
    helena67 Member Posts: 357
    edited August 2009
    I don't take any premeds with the Herceptin-only infusions and no-one ever offered any. Strange that they include Benadryl - it does not seem necessary. Maybe as a convenience to the nursing staff that the patient is sleepy! Smile
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  • ccbaby
    ccbaby Member Posts: 985
    edited August 2009

    They do give me Tylenol too before the infusion. When I go in tomorrow, I am going to ask my onc why I need to be on Benadryl and pepcid and I am going to ask him to take me off of it since it seems like it isn't necessary. I am driving myself over there this time and I don't want to be sleepy. LOL Helen!

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  • SusieMTN
    SusieMTN Member Posts: 795
    edited August 2009

    ccbaby - they gave me tylenol and benedryl.  A few times benedryl was via IV. Benedryl doesn't have a big effect on me, slightly tired is all.

    So glad I am done now, one thing less to do.  Good luck ladies!  Hope you are having a good weekend!

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

    no premeds for herceptin... never heard of that.

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  • cil326
    cil326 Member Posts: 60
    edited August 2009

    I don't think Benadryl nor Tylenol is needed.  I had 4 Herceptin alone now, no pre-med! 

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  • pmellon
    pmellon Member Posts: 38
    edited August 2009

    I am now on herceptin only treatments and I take nothing along with the herceptin. 

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  • BrandonMom
    BrandonMom Member Posts: 412
    edited August 2009

    I have no pre-meds for Herceptin. I had benadryl/Pepcid as pre meds only when I was getting the taxol/Herceptin combo.

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

    I had 2 regular tylenol just before Herceptin as I got down to only 4 more to go.   My joints and bones ached a lot and when I got home, after driving to and from, I took tylenol 3 so I could sleep that night.   No premeds, but I had a full bag of saline going in at the same time because I had gotten dizzy when they started Herceptin only.   I finished July 16 and the joint and bone aches are still there, but not quite as bad.   It is more a stiffness if I sit too long.    

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  • ccbaby
    ccbaby Member Posts: 985
    edited August 2009

     just got home from my herceptin treatment and I told the onc that I didn't want or need the benadryl or pepcid, and he agreed and said that I mainly needed that because of the Taxotere that I was allergic to. I feel just fine.

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  • pmm10414
    pmm10414 Member Posts: 18
    edited August 2009

    I read about all side effects and I am glad I am not only one.  I started in March had a break in June/July for surgery and then restarted about 6 weeks ago.  Onc believes me but PA said that this is from cancer.  I am 100% negative via path and PET so go figure.  I take Claritin daily for the nose (it is always stuffy) and Vicadin only at night occasionally for pain in muscles and joints but I will take it compared to AC and Taxol side affects I experienced.  I think everyone is different. The only thing I will say is I had a large number of side affects from others -- my neuropathy is getting better slowly (almost 3 months out of Taxol treatment).  It gets worse right after I receive my weekly Herceptin treatment -- then come diarrhea -- then come headache/muscle ache/joint pain.  It always occurs on same day weekly -- very strange.  Good Luck to the 2009 group -- I there with you.

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  • pmm10414
    pmm10414 Member Posts: 18
    edited August 2009

    PS they have me take Tylenol as a pre-med that is it.

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  • plakatakr
    plakatakr Member Posts: 188
    edited August 2009

    I don't get any premeds for Herceptin. I get an Echocardiogram next Friday and if all is well...4 more Herceptin and then I'm done!

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  • dharmamama
    dharmamama Member Posts: 138
    edited August 2009

    Anyone here take Herceptin ONLY instead of Herceptin with/following chemo? I have an underlying health condition that will most likely prevent me from having standard chemo, but I will hopefully be able to continue with Herceptin.

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  • NanaA
    NanaA Member Posts: 293
    edited August 2009

    dharmamama -The standard is herceptin started with chemo and then continued.  But I would not know why they would not give herceptin if you cannot do chemo.  I have read that the performance of herceptin was just a little better when started with chemo, so apparently it is given without chemo..  You might have to discuss with insurance co. about paying for something not the typical protocal (sp).  Best wishes   Annette

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  • helena67
    helena67 Member Posts: 357
    edited August 2009

    Hi dharmamama

    Surely they can give you the Herceptin without the chemo.

    Also, would it be possible they give you some kind of lighter chemo regimen? You may want to get a second opinion about discontinuing th chemo - perhaps it can be managed? Your Onc could perhaps discuss with a hepatologist...

    Best, Helena.

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  • dharmamama
    dharmamama Member Posts: 138
    edited August 2009

    Thanks for the wonderful suggestions! I am going to be seeing a Liver Specialist tomorrow and will be having a biopsy to figure out the damage. I was started on a very high dose chemo regimen and would love if I could continue at a lower dose. 

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  • ango74
    ango74 Member Posts: 255
    edited August 2009

    Well, I haven't been on here in a very long time.  I am surprised to see so many new faces. I only have two more Herceptins and Avastins to go!! I'm freaking out a bit about this, not ready to give up the Herceptin.  I remember when I was first diagnosed I would read about women ending the Herceptin and being anxious about it.  I couldn't understand it but I cetainly do now.  It's a bit scarey. However today is my one yr anniversary of being NED.

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  • dharmamama
    dharmamama Member Posts: 138
    edited September 2009

    I found a fascinating study that found that taking Evening Primrose Oil in combination with Herceptin caused a 30-40 fold increased response in breast cancer cells to Herceptin. For the full article, check out -

    http://cancer.northwestern.edu/news/pdfs/2005/EC_Lupu_Primrose_Oil.pdf

     I believe this was using a relatively small study group, but the results are still pretty compelling! 

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  • ccbaby
    ccbaby Member Posts: 985
    edited September 2009

    I am half-way through my herceptin treatments, YAY!

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  • mmm5
    mmm5 Member Posts: 1,470
    edited September 2009

    Ango - good for you almost done! I also used to not be able to understand why woman would freak after end of treatment, I was so happy to be done, and got my port out the next day. I had plans and was working on getting my life and appearance back. THen BAM  it hit me and I just had some melt downs like now what? And I didnt feel better right away and I just could not get it together emotionally. So be happy to be done and celebrate, and just understand that anxiety and some depression is normal and it is just part of the process I believe. Most of all enjoy not being in ACTIVE TREATMENT>

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  • Orlandogator
    Orlandogator Member Posts: 14
    edited September 2009

    Hi Karen and Laura -

    Sorry I think I am posting from a few pages back.... 

    I am 37 years old (diagnosed in Nov 2008) and haven't had a period since February.  I am also on Tamoxifen so not sure if I will get it back or not.  I have read on some of these posts though that some have gotten a period back after 18 months or so.

    I had another Herceptin alone yesterday - if all goes well I have 6 more to go to finish off in January!!

     Hope everypne is doing well!

    Diane

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

    Hi Diane!

    Sorry you are joining us.. but so glad you/we have the Herceptin to take us through this all....

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  • meinnj
    meinnj Member Posts: 12
    edited September 2009

    Hi Tina,

    I have heard about the two year study as well, I think in Europe but have not been able to find any data on it- I'm done Herceptin 5/2010 so thought I'd wait a little longer to bug the onc.  Let me know if you find out anything please- I'd take it through my eyeball if they thought it would help!

    Me in NJ

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  • Alaina
    Alaina Member Posts: 461
    edited September 2009

    CCBaby ~ As of today, I'm halfway through my Herceptin treatments as well!  9 down, 9 more to go!

    MeinNJ ~ Nice to see you over here!

    Alaina

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  • MTB42
    MTB42 Member Posts: 10
    edited September 2009

    I'm interested in how many HER positive women have had taxotere and cytoxan as chemotherapy with herceptin.  I start chemo next Tuesday and opted for cytoxan instead of the more usual carboplatin along with the taxotere.  I want fewer side effects but am hoping that my choice will prove as effective as the carboplatin.

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  • Bonnie02
    Bonnie02 Member Posts: 193
    edited September 2009

    First time on this particular site but am taking Herceptin with 2 more left to go.  I have had so much muscle pain more than joint pain. I was wandering if this could be a side affect from the Herceptin. I have been going to physio for the past month and it was helping till you stop and then I can feel the muscles starting to return to the way they were, especially in my arms, shoulders and shoulder blades.  If anyone has had problems like this I sure would like to know about it thanks.

    Bonnie

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  • corkyandme
    corkyandme Member Posts: 12
    edited September 2009

    I had very few side effects from cytoxin, taxotere and Herceptin. Took tylenol, to avoid fever.

    Found that by increasing the time for infusion, had no headache after the first one. I never had any side effects until after treatment was complete. Then the muscle aches and bone pain kicked in, but is now getting better. Finished up with Herceptin in July and had port out the next week.

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  • cheers247
    cheers247 Member Posts: 270
    edited October 2009

    I've been getting H, but yesterday was the first I got H without chemo, and so far, no SE!  Fingers crossed, I don't get any!

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