Whirlwind...

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Terri001
Terri001 Member Posts: 29
edited June 2014 in Just Diagnosed

This has been a wild and crazy week. It is hard to believe that it has been only a week since I got the news. I have been to the doctors almost everyday and think I have finally completed all the pre-therapy testing they wanted done. I have surgery to put in my port on Monday and will be beginning chemo on Wednesday to shrink the tumor. 6 rounds, every 21 days. Then bilateral mastectomy and reconstruction after that. Followed by 6 more months of herpticin. How bad is the chemotherapy? I have only seen this stuff in movies. Will it hurt? Will I be able to work? This is all very overwhelming but I feel blessed that it is not any worse than it is. I cannot help but feel a little guilty for being so self absorbed lately. :(

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  • linda505
    linda505 Member Posts: 847
    edited March 2014

    Hi Terri001  

    Sorry to hear about your diagnosis but you are lucky as I was to find this forum.  I am also recently diagnosed but going the surgery route and then the chemo and herceptin route.  I meet with my oncologist on friday.  Here is a thread that I found interesting about herceptin and how people reacted to it. 

    https://community.breastcancer.org/forum/80/topic/...

    and here is one that people are talking about the chemo treatments

    https://community.breastcancer.org/forum/69/topic/...

    hope these help you - I have been reading them so that I have some idea what to expect

  • Anonymous
    Anonymous Member Posts: 1,376
    edited March 2014

    Chemotherapy is not a walk in the park, but it is not nearly as bad as the movies make it out to be. Some people actually have a pretty easy time of it - depends a lot on the individual person and also on exactly what chemotherapy agents you will be given. Some people even carry on working their regular jobs & keeping  up household duties! I worked part-time during chemo, but had very little energy. However, I think some of the newer chemo regimens might be easier (mine was nearly 10 years ago). I also had "does-dense" chemo protocol, which means that I had treatment every two weeks instead of three weeks - this is probably more difficult than every three weeks.

    There are medications to reduce or eliminate nausea - these are often given as an IV alongside the chemo, plus tablets to be used as needed (or IF needed) in the weeks between treatments. So the intractable vomiting shown is movies just isn't current-day reality (if it ever was). And there are treatments for many of the other side effects you might experience. My MO's office told me to call if I had ANY problems (fever, pain, mouth sores, etc.) & at least talk to the call nurse. Usually, they had some medication available to help out.

    I had NO side effects on Herceptin (weekly treatments for a year).

  • linda505
    linda505 Member Posts: 847
    edited March 2014

    Hi Optimistictraveler,

    You must have been one of the very earlier people to get herceptin - are you still on anything?  Good to see a triple positive almost 10 years out!

  • Anonymous
    Anonymous Member Posts: 1,376
    edited March 2014

    I started chemo in Oct. 2004. My MO went to the Breast Cancer Symposium in Dec. 2004 (he goes every year), when reports came out that the stage III trials of Herceptin for adjuvant treatment were stopped because researchers felt results indicated so strongly that Herceptin stopped the cancer in its tracks (my words) - that it would be unethical to withhold Herceptin from those in the control group who were getting placebo.  Prior to this, Herceptin was only used in cases of metastasic Her2+ BC. (I may be getting this a little wrong, but it's the gist of what he told me.) So, my MO said I would get Herceptin early on - starting at the tail end of Taxol. And my insurance paid for it!

    While I would be most happy not to have had cancer at all, I'm so glad that it came along at this point in my life, not a few years earlier! I feel that Herceptin is likely what has saved me - I knew several women who were dx'd shortly before I was, and they died within 3-4 years of dx. 

    I have been on Arimidex since about May 2005. No side effects from that, either - just another pill I have to take. My MO & I discussed it, and I will probably continue on it as long as my bone density is still OK when I get the Dexa in June.

  • Terri001
    Terri001 Member Posts: 29
    edited March 2014

    Had port in yesterday and it wasn't too bad until I tried to sleep. Uggghh! Really wasn't prepared for that part. Have chemo training today and also have to talk to financial counselors regarding the estimate for the cost of my treatment? I have insurance so that is making me a little nervous. They cant refuse me treatment if I can't pay huge payments can they? This is crazy. The financial part was the last thing I was worried about! I am praising God for Aflac at this point.

  • Okiemomof4
    Okiemomof4 Member Posts: 54
    edited March 2014

    You can do it, Terri 001. I will be praying that you'll find relief from your port site tonight, and I will especially be praying for you tomorrow. As we say here, "We'll all be in your pocket."

    Take care.

  • Rmanmom
    Rmanmom Member Posts: 31
    edited March 2014

    Infrequent poster here, I wanted to say hi as I had very similar circumstances.  A diagnosis of IDC (triple positive) a bunch of tests asap and neoadjuvent chemo, then a UMX with DIEP and Herceptin continuing for a year.  I didn't have a port or chemo class, once my PET scan came back clean, I was hooked up the very next day, my MO doesn't do ports unless absolutely necessary although I kind of wish I had one as my veins are shot.   I had TCH x 6, every 21 days (perjata wasn't approved for early stage Her2+  in 2012 but it is now so you may be getting that also).  Chemo was very doable.  I pretty much continued on with my life as normally as possible.  I worked full time from home, shuttled my 12 year old and his friends to sports and activities, socialized with friends and even took a ski trip.  Read these boards as these wonderful women have so much knowledge.  Any time I had an SE, sure enough someone had a remedy for it that worked wonders.  Working out at the gym, taking long walks or bike rides outside kept me sane.  On my worst days, I put on my workout gear and headed to the gym.  I was the woman in the beanie spraying down all the equipment with disinfectant!   I drank as much water as humanly possible.   By treatment #5, a 20 minute walk on the treadmill was all I could muster up, but it was better than nothing.  You will have good days and days you'll feel like crap.  However, Herceptin truly is a miracle drug.  I had a Pathological Complete Response which means that the chemo completely killed the cancer, by the time I had surgery, it was gone.  You will find yourself "on the other side"  before you know it and you'll look back and it will seem incredible that you took this journey no one wants to take.  I am a little over a year out from chemo and a year out from surgery.  I completed Herceptin in Oct 2013.  I take Tamoxifen and so far that is manageable too.  I was 48 at diagnosis and as I approach 50 I feel really good.  You got this!

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