Herceptin Help

VictoriaO
VictoriaO Member Posts: 5
in Breast Cancer #1
Hi, I'm new. Just finished my first round of chemo and the 2nd week Herceptin IV.
Was hoping for some tips on the Herceptin only days. It really wired me and I could not sleep at all last night. Very hyper and uneasy feeling inside, not nausea, but a raw feeling.

I am looking for any tips on what to eat/drink on Herceptin IV days pre/post and if it would help to ask for more saline in the mix. I know they cut it down to speed up the drip, but am I better off asking for a slower drip? I have the time and the office is not busy.

Thank you all,
Blessings,
Victoria

Comments

  • Monicalynn
    Monicalynn Member Posts: 61
    #2
    I'm glad you posted, i'm
    I'm glad you posted, i'm going to be starting my herceptin only on July 12th. Finished my four rounds of chemo and am so happy for that :) I had a couple days I was wired up so took a benedryl and that helped me get to sleep but wake up about every 2-3 hours.
  • Angie2U
    Angie2U Member Posts: 2,991
    #3
    I wish I could offer some
    I wish I could offer some advice, but, I was never on Herceptin. I do know that it is called the miracle drug as it helps so many.

    Good luck with it and with your chemo.


    Hugs, Angie
  • camul
    camul Member Posts: 2,537
    #4
    I am on herceptin
    and the only thing I get is what I call the herceptin headache. Use to call it chemo headache, but realized I started getting it when I started on Herceptin and still get it on the week that I don't get chemo.

    I take half an Ativan usually when I go to bed, if that does not work I take the other half which is the real dose. It is just enough to get me to sleep and I am not drowsy in the morning. I would talk to your onco. I have never had any se, other than a light headache with it.

    Best to you,
    Carol
  • Bella Luna
    Bella Luna Member Posts: 1,578 Member
    #5
    Me too
    Hi Victoria,

    Sorry to hear you are dealing with cancer but so glad you found us on CSN. You will find lots of valuable information and support from we Pinks!

    Like you, I was on Herceptin too. June marks my 3rd year with NED( No Evidence of Disease). You know... I wasn't on any special type of diet when I was getting Herceptin infusions. I did eat lots of homemade soups( lentil, garbanzo, legumes, chicken soup). I tried to eat healthy( fruits, veggie,chicken, fish)and drank tons of water and EXERCISED frequently.

    When I found out that Herceptin might cause heart damage, I kicked my exercise routine up a notch. I devoted time to keeping my Temple( Mind, Body, Soul) Strong! Are you being followed up by a cardiologist? I would imagine that you are. If not, talk to your oncologist about a referral. I had cardiograms every three months for a year.

    Hope the above is of some help to you. My best as you Move Forward with your Recovery.
    Ines
  • NancyJac
    NancyJac Member Posts: 91
    #6
    Never have had SE from Herceptin
    I've been on Herceptin for 7 months and never had any side effects from it. Are you sure the feeling wired isn't from something else? I was taking dexmethodadone as a nausea preventative and it made me feel wired. Also many side effects of chemo don't appear until several days after the infusion, so just because it happens to occur on a Herceptin day doesn't mean the SE is from the Herceptin. Saline is generally used as a pre or post infusion flush. I've never heard of it actually being mixed with the Herceptin. Have you described these side effects to your onc? Most likely he/she can give you something for days that you feel wired. I doubt that what you eat or drink will make any difference.
  • VictoriaO
    VictoriaO Member Posts: 5
    #7
    NancyJac said:

    Never have had SE from Herceptin
    I've been on Herceptin for 7 months and never had any side effects from it. Are you sure the feeling wired isn't from something else? I was taking dexmethodadone as a nausea preventative and it made me feel wired. Also many side effects of chemo don't appear until several days after the infusion, so just because it happens to occur on a Herceptin day doesn't mean the SE is from the Herceptin. Saline is generally used as a pre or post infusion flush. I've never heard of it actually being mixed with the Herceptin. Have you described these side effects to your onc? Most likely he/she can give you something for days that you feel wired. I doubt that what you eat or drink will make any difference.

    SE from Herceptin
    I'm sorry I don't have the lingo down yet. There is something watery they mix with the Herceptin in the IV bag. The first time I got it, it was a big bag, the last time there was less of this other fluid. I was assuming it was saline.

    And yes, you may be correct, it might be something else they gave me along with the Herceptin. I really hope so, so I can not get that anymore. I read many places of Herceptin having no SE. Then I cry when I think I have to endure this 52 more times.

    Tonight I slept some, but woke up feeling raw inside. Mostly my back area, hard to explain, very uncomfortable and well ... 1:18 AM and here I am.
  • VictoriaO
    VictoriaO Member Posts: 5
    #8
    Bella Luna said:

    Me too
    Hi Victoria,

    Sorry to hear you are dealing with cancer but so glad you found us on CSN. You will find lots of valuable information and support from we Pinks!

    Like you, I was on Herceptin too. June marks my 3rd year with NED( No Evidence of Disease). You know... I wasn't on any special type of diet when I was getting Herceptin infusions. I did eat lots of homemade soups( lentil, garbanzo, legumes, chicken soup). I tried to eat healthy( fruits, veggie,chicken, fish)and drank tons of water and EXERCISED frequently.

    When I found out that Herceptin might cause heart damage, I kicked my exercise routine up a notch. I devoted time to keeping my Temple( Mind, Body, Soul) Strong! Are you being followed up by a cardiologist? I would imagine that you are. If not, talk to your oncologist about a referral. I had cardiograms every three months for a year.

    Hope the above is of some help to you. My best as you Move Forward with your Recovery.
    Ines

    Thank you
    Yes, I know about the heart probs, my Dr. has sent me for a baseline electrocardiogram.

    I'm hoping it is something else causing the problem. This is my first week of Herception only. But there were a couple of other "aides" they gave me as drips.
  • NancyJac
    NancyJac Member Posts: 91
    #9
    VictoriaO said:

    SE from Herceptin
    I'm sorry I don't have the lingo down yet. There is something watery they mix with the Herceptin in the IV bag. The first time I got it, it was a big bag, the last time there was less of this other fluid. I was assuming it was saline.

    And yes, you may be correct, it might be something else they gave me along with the Herceptin. I really hope so, so I can not get that anymore. I read many places of Herceptin having no SE. Then I cry when I think I have to endure this 52 more times.

    Tonight I slept some, but woke up feeling raw inside. Mostly my back area, hard to explain, very uncomfortable and well ... 1:18 AM and here I am.

    I would still highly recommend you talk to your onc about this
    You need to make him/her aware of all SE but I am still doubtful that these SE are from the herceptin. When I was on chemo, I had a full chemo treatment everything weeks, including herceptin with just herceptin on the intervening weeks. I also got a neulasta shot the day after each chemo treatment. I had SE from the chemo drugs and the neulasta, but they didn't appear immediately. Some of them didn't appear for about a week (just about the time I had a herceptin only treatment). At this point I am only on herceptin and have no SE. The SE you are discribing could be from the chemo drugs, neulasta, anti-nausea drugs, or any other meds you may be taking. In any case, tell you onc about it and he/she can likely mitigate the SE without altering your protocol and reducing the effectiveness of the hercetin.
  • Alexis F
    Alexis F Member Posts: 3,598
    #10
    camul said:

    I am on herceptin
    and the only thing I get is what I call the herceptin headache. Use to call it chemo headache, but realized I started getting it when I started on Herceptin and still get it on the week that I don't get chemo.

    I take half an Ativan usually when I go to bed, if that does not work I take the other half which is the real dose. It is just enough to get me to sleep and I am not drowsy in the morning. I would talk to your onco. I have never had any se, other than a light headache with it.

    Best to you,
    Carol

    Just wishing you good
    Just wishing you good luck!

    Lex
  • jwood1176
    jwood1176 Member Posts: 16
    #11
    chemo, maybe?
    hello, welcome, i am sorry you have had to find this site, but glad you are here. it is full of information and support. I also am on herceptin. i finished chemo march 22, 2012 had chemo every three weeks and herceptin every week. and now i have herceptin every 3 weeks and will through december. while on the chemo i was achy and had headaches, some nausea and restlessness, but felt so tired. now that i am getting only herceptin i have noticed a headache a few days after. and this past treatment i was real achy in my joints. it seems i am having more joint pain and also muscle pain in chest and arms and back and neck. i am going to talk to my onco next week about it. maybe its some of the other meds they are giving with it. i would definatley speak to your onco about it.
    God Bless,
    Jaime Wood
  • debi.18
    debi.18 Member Posts: 850 Member
    #12
    jwood1176 said:

    chemo, maybe?
    hello, welcome, i am sorry you have had to find this site, but glad you are here. it is full of information and support. I also am on herceptin. i finished chemo march 22, 2012 had chemo every three weeks and herceptin every week. and now i have herceptin every 3 weeks and will through december. while on the chemo i was achy and had headaches, some nausea and restlessness, but felt so tired. now that i am getting only herceptin i have noticed a headache a few days after. and this past treatment i was real achy in my joints. it seems i am having more joint pain and also muscle pain in chest and arms and back and neck. i am going to talk to my onco next week about it. maybe its some of the other meds they are giving with it. i would definatley speak to your onco about it.
    God Bless,
    Jaime Wood

    Herceptin
    I've been on Herceptin since August. I was on in weekly with Taxol for the 1st 12 weeks and then they tried to do the normal 3 doses every three weeks. I couldn't tolerate that much of it at one time. My legs and feet became extremely swollen, so they changed me back to weekly treatments. Other than that, I've haven't had any side effects. I'll be done with my final dose on August 9th..Woo hoo!!

    Please make sure you tell your chemo nurses or onc about the problems you are having.

    Hugs, Debi
  • jnl
    jnl Member Posts: 3,869 Member
    #13
    VictoriaO said:

    Thank you
    Yes, I know about the heart probs, my Dr. has sent me for a baseline electrocardiogram.

    I'm hoping it is something else causing the problem. This is my first week of Herception only. But there were a couple of other "aides" they gave me as drips.

    I am very sorry that you're
    I am very sorry that you're having these problems. I hope when you talk to your oncologist that he or she can help you with them.

    Hang in there and good luck!


    Hugs, Leeza

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