Herceptin - Quick Side Effects Poll

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  • Gin52
    Gin52 Member Posts: 272
    edited February 2011

    Hey Ladies,   I haven't posted in quite a while...  Hope everyone is doing well!!  I finished my herceptin in Dec, and went to the dr for the second time this year.  After I left, they called and told me that they had scheduled a MUGA scan.  Is that standard? To have one more after finishing herceptin?  Was just curious....

  • Lilah
    Lilah Member Posts: 2,631
    edited February 2011

    I don't think I had one after finishing... but it may be that if insurance allows, they do it (and if not, they don't).  It also may be, in my case, because my last MUGA showed an improvement (up to 65 from 58).  It can't hurt!

  • Smile_On
    Smile_On Member Posts: 66
    edited February 2011

    Did anyone else ever have lots of itching in their port area after a Herceptin infusion.  This was my 7th Herceptin and I had chemo w/out Herceptin before I started and have never had the itching before.  It isn't red or anything, just constant annoying itching right at the port. If it continues to Monday I'll call my onc, but just wondering if any of you had had the itching before.

  • lago
    lago Member Posts: 11,653
    edited February 2011

    It's winter and dry. I think everything is going to start to itch. Seriously so far no itchue I mean issue.

  • Lilah
    Lilah Member Posts: 2,631
    edited February 2011

    LOL Iago.

    My port always was uncomfortable (slightly) - as if my body simply did NOT want it.  It's gone now thank goodness.  I was never itchy particularly.  I'm thinking Iago has it right and you should just put some lotion on (try Aquaphor or Eucerin).

  • isis818
    isis818 Member Posts: 25
    edited February 2011

    Suddenly out of the blue yesterday my face really began to feel dry by night fall it was red and hot and really really dry. I didn't know what to put on it since the creams I had weren't alleviating the condition. This morning my face feels like I had a chemical peel (if that's what it feels like) and is very dry. Has this something to do with Herceptin? My nails seem to be okay. I am persevering with my treatments. About 8 left to go.

  • Lilah
    Lilah Member Posts: 2,631
    edited February 2011

    Wow that sounds almost like an allergic reaction Isis.  I think you should go in to see your doctor -- it might take something more than cream (or it might take a prescribed lotion).  Herceptin can cause an allergic reaction but usually that's initially I think -- though if memory serves (post-chemo impaired though it is) there was always an ancillary drug given with the Herceptin when I went in (Benedryl or something); or maybe that was only with the first infusion.  Anyway it could be to do with Herceptin or it could even be a reaction to something you ate (I suppose)... less likely it's the Herceptin because you've had so many (why have such a reaction now?)  That's why a visit to the doctor seems wise.

  • isis818
    isis818 Member Posts: 25
    edited February 2011

    Well one lives and learns. It seems that the pool water was chemically comprised. Since I swim the crawl my face is in the water all the time. What happened was a chemical burn. It would never have dawned on me until I learned of this this morning. It's so natural when you are getting Herceptin to blame everything that happens on it. In this case it was definitely not Herceptin.

  • Lilah
    Lilah Member Posts: 2,631
    edited February 2011

    Well glad you got it figured out.  Hopefully some cream will help your skin to heal and give whoever is responsible for maintaining the chemical balance of the pool a good kick!

  • nora_az
    nora_az Member Posts: 391
    edited February 2011

    I am flipping out today. I started taking Herceptin the day after Thanksgiving. (TCH treatments)

    The following week I noticed heart palpitations. I called my onc who had me come in the next day so he could check me out and also gave me an EKG. Everything seemed fine but these palpitations have not stopped.

    I did have a ECHO the week before I started TCH, I had my second ECHO today. Im a bit stressed because of the way the tech treated me when we were done. He simply said, "When is the next time you see the doctor" I informed him it was on Friday and that was my next TCH treatment too. He then said, "Well he will have the results by tonight and can discuss them with you on your next appointment"  He then said he had to leave the room and check with someone to make sure everything was done right or if anything more needed to be scanned better.

     I dont know but I would think if all was fine he would have just told me "You're done" and told me I could get dressed.  I think I am stressing from rememering how bad my US of my breasts went when I had breast cancer and the radiologist was called in because she didnt like my US

  • omaz
    omaz Member Posts: 4,218
    edited February 2011
    nora_az - Hopefully he was just trying to be clear.  He may also have been new and unsure of himself maybe?  I had a rapid heart rate for many days between a couple of my treatments and it was because I was slightly anemic they said.  I would lay in bed and it would be 100 beats per minute during the worst time.  Do you know if you are anemic at all?
  • nora_az
    nora_az Member Posts: 391
    edited February 2011

    I was told my blood oxygen levels were a bit off last time I was there. She didn't seem extremely concerned because she said it was low but just something to keep an eye out for. I didn't know what that meant so when I got home I looked it up on line. It was then I realized it meant anemia.

    I am normally a healthy person. BP is normal, normal weight, mid 40's, no history of heart problems. This is what I keep telling myself. I am thinking I will call the onc tomorrow to stop worrying. The tech said he'd have the report by late this afternoon so my onc should know.

  • TMarina
    TMarina Member Posts: 297
    edited February 2011

    nora--Yes--call your onc tomorrow!  I'm sure he will understand why you didn't want to wait.

    Hope everything turns out ok!

  • nora_az
    nora_az Member Posts: 391
    edited February 2011

    Thanks everyone. I am a bit more calm about it this morning but I am thinking about calling. Will they tell me if something isnt right with my US over the phone? I would hate to call and have them say  "We will talk with you on Friday when you get here" because it's not something they will discuss over the phone and that would make me worry worse.

    However if they say, "All is fine" that would be a huge relief!

  • lago
    lago Member Posts: 11,653
    edited February 2011
    nora_az Every doctor is different. Mine will tell and have told me news (good or bad) over the phone.
  • nora_az
    nora_az Member Posts: 391
    edited February 2011

    Thanks Lago....it's worth a try. I will report back

    Oh and remember I said my mom was all clear on the parodid tumor results? Well it appears what seemed to look "benign" was actually malignant. My mom has now been diagnosed with Salivary Gland Cancer. She is a 10 year breast cancer survivor. I asked her if this was a recurrence or not. She said she has to find out she hasn't a clue. Her surgeon said she will probably have to undergo radiation but that's her onc's call.

    Dang....between my mom and I we are quite the pair!

  • lago
    lago Member Posts: 11,653
    edited February 2011

    Sorry to hear about your mom. I'm no MD but this doesn't sound like breast cancer. Sounds like she might have something that can be cured. Let us know.

  • nora_az
    nora_az Member Posts: 391
    edited February 2011

    I was thinking the same. I have never heard of anyone having salvary gland cancer before. I had looked  it up and it sounds like she will most likely be ok.

    Still waiting for the Onc office to call me back

  • omaz
    omaz Member Posts: 4,218
    edited February 2011

    I didn't feel well after my last herceptin infusion 3 weeks ago and this time I asked the nurse to give it to me slowly, so it took twice as long but I feel fine this time. Just FYI if anyone else has any trouble.

  • KAJDerby
    KAJDerby Member Posts: 32
    edited February 2011

    I had a pleomorphic adenoma that Mayo was sure was cancerous (tumor on the salivary gland). Anyway, they did 12 surgeries that day and mine was the ONLY one NOT cancerous!! They did have to take the gland, but they were wrong about the cancer!! Yeah!!

  • TMarina
    TMarina Member Posts: 297
    edited February 2011

    Sorry to hear about your mom nora...

  • nora_az
    nora_az Member Posts: 391
    edited February 2011

    Yippee,

    My ECHO was perfect. In fact it was better than perfect she said I have a very strong heart and valves which hadn't changed since my baseline ECHO.

    I said, "That's all well and fine but why the palpitations on occasion?" She told me it could be stress or anxiety. She told me to tell them "Knock it off!!" when I feel them come on  LOL

    Funny, since I found out the news I haven't noticed it as much.

  • Lilah
    Lilah Member Posts: 2,631
    edited February 2011

    Nora - that's great!  And it sure does sound like anxiety (since, now that you've been told you're OK, you're not noticing it as much).  I'd say take some slow, deep breaths and concentrate on relaxing next time it happens...

  • VickiSam
    VickiSam Member Posts: 106
    edited February 2011

    Lilah:   I am new to this board .. but, not to breast cancer and it marvelous side efforts ..   Just wanted to say,  I adore your hat  .. its so sassy!

    Vicki Sam

  • Lilah
    Lilah Member Posts: 2,631
    edited February 2011

    LOL Thank you Vicki!  I actually got it free from my chemo center last year... they always have knitted caps but one day I went in and found this one on the pile so I snapped it up!

  • VickiSam
    VickiSam Member Posts: 106
    edited February 2011

    Knitted caps only take you so far ... Then there are times we need to 'jazz' it up a bit.  Yes, we are bald, but we want and can be a 'Rock Star',  as well!

    Vicki Sam 

  • KitCat1
    KitCat1 Member Posts: 13
    edited February 2011

    Hi all,

    I am on Hercepton only until June. I feel achy, mild headaches, fatigued.All thsi comes and goes.Is this normal? Do any of you have this.? I  have energy, but then I'm tired. Is this still the chemo in me and Hercepton as well as stress. Onc says these are all normal side effects. Any input would help!

    HUgs to all

  • stlcardsfan
    stlcardsfan Member Posts: 227
    edited February 2011

    Hi Kitcat1 - all normal symptoms of Herceptin.

    Headaches - listed as a side effect. Usually tylenol worked for me. Of course if they get bad, let your doctor know.

    Achy joints - I figured it was leftover chemo in my body. It seemed to peak around the 13th or 14th treatment - was worse in the morning or after sitting around during the day. Once I got up and moving it seems to get better. Exercise actually helps with this. Just about two months past my last one and aches are just about gone.

    Fatigue - you could be anemic, or dehydrated. Have your counts been checked? I know my actually got lower after the last treatment and took about 7 weeks to go back up. One of the reasons I delayed surgery for 7 weeks after last chemo. 

    I ate a lot of protein rich foods after my last chemo to help get my blood counts back up.

    Hope this helps 

  • 1marmalade1
    1marmalade1 Member Posts: 44
    edited February 2011

    I finished my chemo last March 31, including the first 4 of my Herceptin tx.  I still have 6 to go - they keep giving me echo tests before each one.  They have cancelled several of my tx now, because the echo results aren't that good.  I had my last Herceptin tx 5 weeks ago, had an echo last week, now they've cancelled my Herceptin for tomorrow again.  Has anyone else had their H cancelled on occasion, or frequently, as I have?  The onc now wants to see me on Thursday again to discuss continuing tx.  I haven't heard of anyone dropping the remainder of their H tx.  Some feedback would be appreciated.  Thanks.

  • lago
    lago Member Posts: 11,653
    edited February 2011
    1marmalade1 I have read about a few women on these boards that didn't finish all herceptin treatments due to heart issues. Herceptin is still new. They still don't know if you really need a full year or not. The reason why we get a year is because that's what has been in the studies. It doesn't mean that we really need a full year. It is possible that we don't… they just don't know yet.