Just beginning my journey

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ktj1947
ktj1947 Member Posts: 6

I am 62 years of age and have received the diagnosis, after a lumpectomy, of IDC, Stage 1, Grade 3 HER2 positive.  Surgery was Nov 12th and am in the healing process.  Appointments with both medical and radiation oncologists on Dec 2nd.  I have been told that radiation is definitely going to be used.  The tumor was sent out for oncotype DX and awaiting results of that testing.  I have been told by my surgeon that I will require the Herceptin injections.  Of course, the words chemo therapy are frightening enough, but from what I have read, the Herceptin injections can be very dangerous to your heart.  I would appreciate hearing from those that have endured the combination of chemo and herceptin and also herceptin alone (in case I am that lucky) to see how their bodies responded such treatment.  I work full time and my husband lost his job in April of this year with no prospects of employment.  So, I am also worried about losing my job with an impatient boss that I work with.  It is horrible to have to worry about this along with trying to endure treatments that take every ounce of your being to stay positive and get through each day.  To say the least, I am frightened about how I will respond to treatment.  Thanks for listening and look forward to hearing from anyone that help ease my mind a bit.

Comments

  • Faith316
    Faith316 Member Posts: 2,431
    edited November 2009

    My Herceptin was not a shot, but rather infusions and I tolerated it just fine.  No problems heart-wise.

  • sheila888
    sheila888 Member Posts: 25,634
    edited November 2009

    I was both on chemo and Herceptin but not the injection. Had it for 52 weeks. They did the Muga test which they check your heart they have to be careful. I also didn't have any problems and no side effects. Just had to go to the hospital once a week for infusion. You do not loose your hair either. I hope everything works out for you. Herceptin is like a maintenance drug doesn't make you sick..

    Good Luck and if you have any other questions just keep posting.

    Sheila

  • suemed8749
    suemed8749 Member Posts: 1,151
    edited November 2009

    kjt: I remember how terrified I was when I was at your stage, and I'm sorry you have to be here, but glad you found us. I did Taxol/Carboplatin/Herceptin April-July of 2008 then Herceptin every 3 weeks - finished this last April. I had MUGA scans throughout treatment, and I suffered no heart damage. Like Sheila said, Herceptin is tolerated very well by most women.

    I worked throughout chemo (I'm a teacher, so I finished up during the summer), taking off a few days during the treatment weeks. Everybody reacts differently, but I was actually surprised by how much I was able to continue doing through all of this.

    Let us know what your treatment plan is after you see the oncologist. This is a great place for questions and support.

    Best wishes, Sue

  • charleneg
    charleneg Member Posts: 69
    edited November 2009

    ktj1947:  I agree with Sue as I was surprised how I tolerated chemo and Herceptin.  You may be the same way and I pray that for you.  I am currently on Herceptin only until next April which is tolerated very well by people with hardly any side effects.  I even asked my oncologist about the heart issue and he said the amount of Herceptin we take does not damage the heart.  Even on chemo I was shocked as I had a little nausea 2x and the one time was after I had eaten sauerkraut.  I was very frightened of chemo but please don't psych yourself out.  Take one day at a time and try to just get through this very different time.  In the beginning with all the tests, not knowing what you are dealing with is the hardest part, believe me.

    Blessings, Char 

  • charleneg
    charleneg Member Posts: 69
    edited December 2009

    ktj1947:  I agree with Sue as I was surprised how I tolerated chemo and Herceptin.  You may be the same way and I pray that for you.  I am currently on Herceptin only until next April which is tolerated very well by people with hardly any side effects.  I even asked my oncologist about the heart issue and he said the amount of Herceptin we take does not damage the heart.  Even on chemo I was shocked as I had a little nausea 2x and the one time was after I had eaten sauerkraut.  I was very frightened of chemo but please don't psych yourself out.  Take one day at a time and try to just get through this very different time.  In the beginning with all the tests, not knowing what you are dealing with is the hardest part, believe me.

    Blessings, Char 

  • CoolBreeze
    CoolBreeze Member Posts: 4,668
    edited November 2009

    I think the combination of Andriamycin and Herceptin caused heart problems - now that many do taxotere and carboplatin with herceptin, it's not much of a worry anymore.

    I haven't heard of anybody getting herceptin alone without chemotherapy - I didn't know theey did that.  Interesting.

  • chainsawz
    chainsawz Member Posts: 3,473
    edited November 2009

    I had six rounds of TCH (taxotere\carboplatin\herceptin) which ended 11 months ago.  I still get herceptin infusions (thru my port) once every three weeks for over a year now and have zero heart problems.  Many of us with stage IV are on it for many, many years and do not have problems.  It is a great drug and has been doing wonderful things for those of us who are her2+!  

    I work full time and on the day I go for my herceptin treatment, I take a few hours off and work from home the rest of the day.  Sometimes I take the whole day off because it can make me sleepy, but usually I am just fine and feel back to normal by the next day.  

    It is very hard to be positive, but you will find your footing.  I always equate it to waves.  A big one will come along and knock me down for a minute, but I get myself back up and am able to stand up to a few more waves before another big one comes along.  Over the last year, I have gotten stronger with each wave and I can hold my own against some pretty darned big ones.  Hang in there because you will get stronger, too!!   lisa

  • ktj1947
    ktj1947 Member Posts: 6
    edited December 2009

    Just found out last week, I will be on the same regimen as you, Sue.  Will be doing chemo every 3 wks for a total of 6 times with Herceptin weekly for the 18 weeks.  Then, Herceptin every three weeks for the balance of the year.  They also want me to do radiation for 6-1/2 weeks.  Every time I leave these appointments, I am rather numb the next day.  It is a bit overwhelming at times, but I have so much support from friends, I know I will do okay.  I am planning on shaving my head before my hair starts falling out.  A few of my girlfriends are going with me and they want to make it a happy occasion instead of my going alone.  I think it will make it much easier.

    Thanks for all your encouragement. 

    Kathy

  • navygirl
    navygirl Member Posts: 886
    edited December 2009

    Kathy, I'm glad that you know what's coming - sometimes the unknown is the worst part. The most important things I can recommend are resting as much as you need to, taking things to treatment like liquids (drinking before and during can ease the effects), something like hard candy to help if you get a bad taste (some do, but not all), and asking a lot of questions -doing your own research to make sure that the treatments they are recommending are right for you. It also helps if you are outgoing enough to make friends with people you are getting treated with -you will be surprised at how much quicker it goes if you have someone there to chat with. You find yourself looking forward to that time with others, instead of dreading the appointment. 

    Best wishes to you, may it be over before you know it! :) 

  • ktj1947
    ktj1947 Member Posts: 6
    edited December 2009

    Thanks so much for your suggestions.  The dr suggested bringing a bag with snacks and liquids to drink while I am there.  They said I would be there for 3 to 4 hours.  I am assuming I will probably end up meeting other gals while I am spending so much time there.  My husband plans to go with me to my first one.  After I see how I react to the treatment, I may just go alone from then on.  We'll see.  I am already looking forward to the end, even before getting started.  I just wish I didn't have a job to worry about.  My husband is unemployed since April with no prospects of employment ahead.  So, that being stressful enough, worrying about keeping mine doesn't help.  I know that rest and relieving stress are the best things you can do to help you recover.  I need to find some relaxation exercises and keep my mind off it, I guess.

    Thanks again. Hope you have a nice holiday season.

  • ktj1947
    ktj1947 Member Posts: 6
    edited December 2009

    I have another question.  I was told that Taxol caused havic for your nails.  Would it be a good idea to keep something on my nails or would that not make a difference?  I don't usually go for manicures but I do use something to keep them strengthened.  If someone could answer my question, I would appreciate it.  Thanks.

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