TRIPLE POSITIVE GROUP

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  • wpmoon
    wpmoon Member Posts: 270
    edited April 2015

    Hi all!

    Thank you all for your welcomes and suggestions a few months back when I posted - I honestly forgot I posted in this thread, and just found it again. Yay chemo brain!

    I'm halfway through chemo - going in on Monday for round #4. SE's haven't been too bad - broke out in a bad rash after first found that presented like acne. MO put me on doxycycline and clindamycin, and it went away after about two weeks, but I'm still dealing with residual scars from the pustules. One more thing to deal with.

    I'm definitely having lots of diarrhea. Trying to stay hydrated, and a nutritionist recommended staying away from high-fiber foods. Not a problem there since all i'm craving is junk food.

    Someone suggested I have the genetic testing done due to my age (27) - I did have it done, and it all came back clear. Which was frustrating. No answer to the "why me?" question. Instead I just have to accept it.

    I'm not looking forward to going to my next infusion. I'm so tired and want this to be over.

  • ArleneA
    ArleneA Member Posts: 1,309
    edited April 2015


    Hi Ladies:

    What are your thoughts on tomosynthesis versus the standard mammogram.

  • ashla
    ashla Member Posts: 1,581
    edited April 2015

    Arlene

    I have dense breasts so I've opted for tomosynthesis (3d mammograms). My breast surgeon ,MO & the radiologist feel it's a good choice:)

    Until they decide it's a bad choice;)

    Have to pay $75 out of pocket.

  • Mommato3
    Mommato3 Member Posts: 633
    edited April 2015

    I would like a 3D mammogram but it's not offered here. Instead I had to get an ultrasound today because my breast tissue is extremely dense. My gyn didn't want to take any chances with my history.

  • Jerseygirl927
    Jerseygirl927 Member Posts: 438
    edited April 2015

    my acne acting up, going for herceptin Thursday,

    We had a dr of radiology talk about the tomo graphic X-ray that is the wave if the future till the mammo with dye comes next. The pictures are better with those of us who had dense breasts, able to see tumours better.

    Some swelling of ankles myself, could be the heart issue , they check my ankles at chemo. Mention it for sure. Part of the chf issue.


  • ArleneA
    ArleneA Member Posts: 1,309
    edited April 2015

    Thanks Ashla. Just started being offered here. I too have dense breasts so I'll deal with the fee.

  • momwriter
    momwriter Member Posts: 310
    edited April 2015

    I have very dense breasts. Unfortunately, the 3D mammo doesn't work on me- it missed things that a thorough breast ultrasound picked up (luckily benign). But one interesting possibility- The breast center I go to is part of a study investigating using 3D mammo with contrast dye once a year vs. Mammo + MRI alternating every 6 months.

  • ashla
    ashla Member Posts: 1,581
    edited April 2015

    I actually have both 3D mammo & ultrasound every 6 mos because I have developed 3 tiny cysts along the scarline. Together, they seem to provide a good look. So far. I hope.

    Think MRI is most accurate but cost is prohibitive.


  • ArleneA
    ArleneA Member Posts: 1,309
    edited April 2015

    Thanks for the feedback everyone.  I'll see what my onco says.

  • Blownaway
    Blownaway Member Posts: 760
    edited April 2015

    Mouser - My LVEF went from 55 to 35 during the course of 7 Herceptin infusions (counting during chemo also). I was extremely breathless and my ankles were not recognizable as my own - swollen hugh.  I too worry about "Did I get enough to keep the cancer from coming back." I've read in some of the posts on this website that HER2 is highly reoccurring, especially within 2-3 years after treatment and I think that refers to people who actually finished all their Herceptin infusions.  What that means for us.....I wonder.

    Just had my mammo and ultrasound on Tuesday (can't believe it's been a year since diagnosis already). I got nervous because the tech kept going over the nipple area and taking pictures during the U/S, then she said she was bringing in the doctor to look at what she was seeing.  The doctor turned out to be a radiologist who said "Everything looks good" so now I'm waiting to see my onco tomorrow and find out what they were so intent on looking at in the nipple area.  Does anyone know if the techs always bring in a radiologist for a second ultrasound?

  • IndyGal35
    IndyGal35 Member Posts: 340
    edited April 2015

    My tech had a radiologist come in during my follow-up ultrasound after diagnosis. The radiologist wanted to make sure that she had images of every little thing. She was incredibly thorough and even found several hidden (negative) lymph nodes.

    I'm hoping they were just being extra picky for you. At least you got immediate feedback right from the doc. Waiting for results is such misery. :(

  • Mouser2843
    Mouser2843 Member Posts: 8
    edited May 2015


    Blownaway, yes, it is a rather awkward position we are in since we didn't finish our Herceptin treatments. Rather scarey for us as my Onc. was stressing how Herceptin was the magical drug.  She is now telling me we'll just have to be more vigilant for the next 4 years (been 16 months since all this started!). I tend to get nervous when I don't feel good and of course am constantly checking for lumps and things. I did have a double mastectomy for my own peace of mind but am so scared at times I just hide and cry. Only a person going through this can understand.  I hope your results are positive when you see the Dr. next week.

     

  • lago
    lago Member Posts: 17,186
    edited May 2015

    Also remember that before Herceptin many HER2+ women survived and are still here today. Like chemo we don't all need Herceptin…Problem is they haven't figured out who needs it and who doesn't.

  • ArleneA
    ArleneA Member Posts: 1,309
    edited May 2015

    Blownaway and others:  I passed 4 years and I only made it through 10 Herceptin treatments.  I've had several oncologists say (as Lago indicates) that they really don't know who needs it and who doesn't.  Just remain positive and try hard not to worry.  I'm curious how they came up with 18 treatments but guessing this is more than needed but better safe.

  • SpecialK
    SpecialK Member Posts: 16,486
    edited May 2015

    I think the current research in Herceptin is focused on whether shortening the treatment can be as effective. I know they have looked at two years versus one, and concluded that longer was not better.  I think they have looked, or are looking at, 6 months versus one year also. There is a recent Finnish trial (SOLD) looking at 9-week Herceptin, to try to limit any cardio-toxic exposure but still have desired results.  The data is still too early, and I believe not confirmed by any other trials, but I think that is hopeful for those of you who were unable to do the entire year. 

  • lago
    lago Member Posts: 17,186
    edited May 2015

    Special the last I heard was they did say 12 months is better than 6 but it might have been an older smaller trial.

  • AlaskaAngel
    AlaskaAngel Member Posts: 1,836
    edited May 2015

    Arlene, just as a cheer-upper to you -- I never had any trastuzumab, my tumor was 1.9 cm, I was 51 at time of dx, and I only did 1 full year of tamoxifen followed by 3/4 year of half-dose. So far, so good at 12+ years out from tx.

    Cheerio!

    A.A.

  • Blownaway
    Blownaway Member Posts: 760
    edited May 2015

    Well the good news is that my onco confirmed that the U/S tech and radiologist were just being extra vigilant because of some scar tissue which can hide cancerous lesions. They all claim I'm cancer free and should go live my life as normal.

  • Jerseygirl927
    Jerseygirl927 Member Posts: 438
    edited May 2015

    sure hope that they come up with a more conclusive Dx about herceptin, I really have some issues with it and have only done treatment since February 26 th. some numbness is creeping in on right foot and right thumb so far, and a horrible case of acne on my face. The cardio so far has been minimal, except for rapid heart beat with over exertion ...

  • RobinLK
    RobinLK Member Posts: 840
    edited May 2015

    The numbness can also be from the Taxol. It is generally the culprit of neuropathy.

  • Mommato3
    Mommato3 Member Posts: 633
    edited May 2015

    Yes, the taxol causes neuropathy. I started having some problems with my feet towards the end of chemo. The only SE I have from Herceptin is the runny nose. I had my exchange and reduction/lift yesterday afternoon. I feel pretty good today. A little sore but ibuprofen seems to help. I can't wait to see what everything looks like on Monday. I can't believe it's been one year since I was diagnosed (April 25). Next Saturday will be my one year cancerversary. It's been a long year.

  • ashla
    ashla Member Posts: 1,581
    edited May 2015

    On dense breast tissue...the role for additional screening .


    http://www.kevinmd.com/blog/2015/05/dense-breast-t...

  • ashla
    ashla Member Posts: 1,581
    edited May 2015

    http://health.usnews.com/health-news/articles/2015...


    Nipple sparing mastectomy is as good as full breast removal in many cases......

  • debiann
    debiann Member Posts: 1,200
    edited May 2015

    Jerseygirl. Taxol causes the numbness or " neuropathy". You can ask your MO about taking B6 to help with this. Also, let your mo know if it gets too bad because it can become permanent.

  • runningcello
    runningcello Member Posts: 110
    edited May 2015

    I felt like sharing a snippet of something I wrote recently:

    The greatest tip I can offer to anyone is to remain positive and keep those that lift your spirits around you as much as possible. To be treated like a normal person is the greatest gift a family member or friend can give to their loved one enduring this diagnosis. It is essential to take care of oneself and to not exhaust oneself or spread oneself out too thin. Cancer demands your time and your energy during treatment but it is not permanent. It's just a little detour on the journey of life. Ensure that you are staying hydrated and nourished during treatment and if you're anything like me .. setup a way to receive fluids days after treatment to prevent dehydration and hospitalization. If your hair falling out is inevitable and you want to avoid the process of seeing your hair fall out until there is none left, just shave it off and make a party out of it. Take pride in who you are and what you are. Know that you are not defined by your hair or your physical features but by your spirit and your courage. Know that you will remain the most perfect reflection of God's grace even when you feel shattered and broken. Cancer does not determine the person you are or the life you live. You defeat cancer by ensuring it knows it will not defeat you and dictate your spirit.

  • Bren58
    Bren58 Member Posts: 1,048
    edited May 2015

    well said runningcello!!!

  • ashla
    ashla Member Posts: 1,581
    edited May 2015

    Runningcell

    Lovely......

  • Jerseygirl927
    Jerseygirl927 Member Posts: 438
    edited May 2015

    ditto running cello, that lifted my spirit, as I sometimes really just feel down, don't know why, but it happens to me.

    I have a Question, has anyone experienced ear popping during their chemo or hormonal therapies? It does not hurt, just pops continually and I never noticed ever before! Seems to have started about 2 weeks ago, comes and goes?

  • debiann
    debiann Member Posts: 1,200
    edited May 2015

    My ears didn't pop, but the right ear would feel as though it had water in it. It was worse after a tx.

  • wpmoon
    wpmoon Member Posts: 270
    edited May 2015

    my ears have been pooping for about a month. I thought I had a cold until other women in the March group mentioned the same thing. It's subsided a bit now so hopefully it lessens for you too.

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