TRIPLE POSITIVE GROUP

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  • SpecialK
    SpecialK Member Posts: 16,486
    edited November 2011

    kay1963 - that is so not right.

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  • lago
    lago Member Posts: 17,186
    edited November 2011

    I agree. They should be asking those that don't have advanced stage (stage IV or metastatic) questions like that. Someone one is clueless/insensitive.

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  • geewhiz
    geewhiz Member Posts: 1,439
    edited November 2011

    Agreed...horrible.

    At my first infusion the lady sitting across from me had a doctor come out. He told her and her daughter there was nothing else they could do and death was right around the corner. Within minutes a way too chipper young girl came out going over hospice options, like she was choosing a new pair of shoes or something! The poor woman just stared out, making eye contact with me for the longest time. It was a mixture of utter sadness and disbelief. I smiled at her...not knowing what the heck else to do. She gave me this beautiful warm smile. I will never forget her. Such private matters, need to be kept PRIVATE!!



    I go to a reiki person. She is the one who actually taught me to visualize a white light enveloping myself before I go into the center...to protect myself from negative feelings and experiences. I am supposed to say "I encircle myself with the white light of God's divine love and protection"...I still do it...works for me!

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  • kennylynne
    kennylynne Member Posts: 152
    edited November 2011

     I am triple positive as well almost done my last dose dense of taxol which is very hard on my bones and muscles. Start rads [ 25] in Dec. Would love to hear from ladies who have completed that journey as well as the ones going through it. This sure can take you to a dark place but for the most part am trying to stay as postive as I can. Wishing all you ladies the best of luck in your journey

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  • dragonfly1
    dragonfly1 Member Posts: 766
    edited November 2011
    kennylynne Welcome! Congrats on being almost done with chemo. I know that a lot of us felt a quite a bit better 4-6 weeks after we finished. The leg pain, weakness and fatigue really improved (I'm assuming it's similar for Taxol since it's also a Taxene). I did Rads and although it added a little more fatigue it was relatively easy-just a very busy schedule-keep your skin very well moisturized as they instruct and you'll do well. How is your Herceptin going? Better days are ahead...
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  • Omaz
    Omaz Member Posts: 5,497
    edited November 2011
    Welcome Kennylynne - Congrats on being almost done!  If you are interested I have a little routine that I used for skin care during rads that I can PM you.
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  • Kay_G
    Kay_G Member Posts: 3,345
    edited November 2011

    Welcome Kennylynne!  I just finished rads today!!  I am still on a bit of a high, so can't really comment coherently.  One thing I'll say is it sounds like a long journey at the beginning, but it does go by quickly.  Hang in there!

    Geewhiz, that is truly one of the worst stories I have ever heard.  That is just terrible, I can't believe the insensitivity at times.

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  • dragonfly1
    dragonfly1 Member Posts: 766
    edited November 2011
    Geewhiz I didn't see your post earlier-I felt such a wave of sadness as I pictured what you described. How tragic that medical professionals can become so immune to human suffering and loss (or detached from it) that they would handle the situation with such a lack of dignity and respect. My heart breaks for that woman and her family:(
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  • kennylynne
    kennylynne Member Posts: 152
    edited November 2011

    Thank you for such a warm welcome ladies!!!! As you know us warriors kinda of need each other. Dragonfly1 how many rads did you have and how are you feeling now, I am doing well on the herceptin muga scan in another couple months, being done the taxol willl be a true gift!!!  Kay1963 congrats on finishing your rads, now on to the reat of your life!!!! Omaz any advice is hepful go ahead and pm me. I am new to this site so I hope I can find where th eprivate messages are LOL chemo brain for sure. Geewhiz that is some sadness!!! Do these Dr.s think because we all have it that its ok to share that kind of private news around??? I really think that most Dr.s are more sensitive to the issues these days. Keep the hope!! 

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  • Judy67
    Judy67 Member Posts: 361
    edited November 2011

    Hello,

    I just found this discussion thread today.  I am triple positive.  I had a bmx last month and the tumor was extremely small but because of a high Oncotype DX score, my onc recommended six treatments and a year of Herceptin.  I admit I am scared of chemo, mostly it's not knowing how it will affect me.  Also, not looking forward to the port and keeping it for a year.  Having that placed after Thanksgiving.  Do you get used to it, or are you always aware of it?

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  • dragonfly1
    dragonfly1 Member Posts: 766
    edited November 2011
    kennylynne I had 28 Rads + 5 boosts (finished the first week of August). I had no skin reaction until the last week and even then it was very minimal-just light peeling for a week. All I have left now are 5 more Herceptin infusions and I'm feeling better all the time:) 
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  • dragonfly1
    dragonfly1 Member Posts: 766
    edited November 2011
    Judy67 Welcome! Glad you found us. There seem to be quite a few people starting chemo right now and this thread is extremely active so you'll have lots of support and help as you go through treatment. As far as the port, most of us opted to have one because of the high number of infusions (chemo + herceptin). Mine only hurt for the first few days after it was surgically placed and I've never noticed it since. I can sleep on that side, etc and it never bothers me. I do have to use a padded seatbelt cover because my port is on my left side (pressure would be uncomfortable otherwise). Tip: the placement is important i.e. avoiding your bra strap area and being low enough that most clothing covers it-your surgeon has some choice in how they place it. 
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  • dragonfly1
    dragonfly1 Member Posts: 766
    edited November 2011
    Judy67 I forgot to ask if you will be receiving Taxotere and Carboplatin as your chemo with your Herceptin? If so, be sure to also join the "Taxotere, Carboplatin and Herceptin" discussion because you will get wonderful tips on specific things to do during chemo to help with side effects as well as the support of others going through it with you...
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  • Judy67
    Judy67 Member Posts: 361
    edited November 2011

    dragonfly1 - Thanks!  I am doing the Taxotere and Carboplatin and will definitely check out that discussion thread.

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited November 2011

    Geewhiz-the white light was part of the visualization used in the book i mentioned earlier and it was the one thing I could make work easily. I still use that too. On the cd, you envelope yourself with the white light of positive energy that flows into and around you. Always makes me feel good.



    Judy-i ended up with a couple of infections and had to have iv antibiotics. Thank heaven for the port. It was left accesed and I could do them as home infusions. I never notice mine either. Make them give you emla cream to slather on before each infusion. Numbs down several layers and I dont even feel the needle.



    And regarding that survey, they should at least have given you a heads up as to the topic so that it wasnt a big surprise. I would be complaining to the originator of the survey.

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  • IsThisForReal
    IsThisForReal Member Posts: 384
    edited November 2011
    HI everyone,

    Maybe someone on this thread could help me. I don't post very often, but tend to do a lot of reading on this site.

    I'm just wondering if anyone knows if L'Arginine is safe for us HER2+ ladies. I've been suffering from a lot of fatigue and have been doing research on different herbs and natural approaches. From what I've read, L'Arginine may stimulate HGH, which is what we don't want, correct? Does anyone have any experience and knowledge of this? I'd really appreciatte it.

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  • Awnooo
    Awnooo Member Posts: 85
    edited November 2011

    Judy67 I had my port freshly placed the week after my diagnosis and one week before chemo. Because things were so fast it did hit me emotionally the first two days. I had a little pain walking and had to lay down (i dont have a lot of tissue in that area so it felt uncomfortable) but its been 3 weeks and now I don't feel it too much. After diagnosis, that was the first time cancer felt physically real, the next big thing is tomorrow because my hair has started to come down. It takes a little time but then, you get used to your new normal. I love turtlenecks anyways. Best for you!

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  • Omaz
    Omaz Member Posts: 5,497
    edited November 2011
    Judy67 - I think you are unusual to have a HER2+ and an oncotype test.  My onc didn't even offer it since I was HER2+.  Did they know about the HER2 when they did the test? 
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  • lago
    lago Member Posts: 17,186
    edited November 2011

    I had my port placed the day before chemo. They tried to fit me in for chemo the same day but there wasn't a chair open.

    oncotype test is not usually given if you are going to have  herceptin because herceptin is almost always given with chemo. It's a waste of money if you are having chemo anyway.

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  • Omaz
    Omaz Member Posts: 5,497
    edited November 2011
    lago - That was the reasoning I was told: HER2+=chemo/herceptin.  I always wondered what my score would have been, maybe better not to know!
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  • dragonfly1
    dragonfly1 Member Posts: 766
    edited November 2011

    I have heard of a few others with Her2+ having the oncotype test but it's uncommon because as Lago said, the treatment plan (for chemo) is pretty much a given with Her2+. I've also read that the oncotype would come back high anyway on a Her2+ tumor-seems logical. However, I notice that Judy67's tagline shows Grade 2, node negative (no size listed-maybe it was small as well?)-maybe they wanted to be absolutely certain...

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  • ArleneA
    ArleneA Member Posts: 1,309
    edited November 2011

    Same for me with the onco test.  My oncologist said HER-2+ doesn't need that test because the treatment is set with chemo and Herceptin and I'm also Grade 2.  I would have liked the test though just to be positive.

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  • mtnbiker
    mtnbiker Member Posts: 41
    edited November 2011

    Hi,

    Ladies

    Im newly dx  i dont have  alot of into.

    surgery first or after chem? any info 

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  • lago
    lago Member Posts: 17,186
    edited November 2011

    mtnbiker I had surgery first but many others had chemo first. Pros and cons to both. Usually the do chemo first for big tumors. I had a big tumor (thought 7cm at the time but only 6.5 including non invasive part) and they still did surgery first.

    What are your doctors recommending and why?

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  • ArleneA
    ArleneA Member Posts: 1,309
    edited November 2011

    Me too, I had surgery first and then chemo and then rads.

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  • YaYa5
    YaYa5 Member Posts: 667
    edited November 2011

    i'm her2 positive, but my onco did the oncotype for me anyway.  i think it had to do with how much chemo i would have?  my oncotype score was 64 so the chemo was a no-brainer.  but maybe i would have had only 4 tx's instead of 6 if the oncotype score had been lower?  i don't know, but i'm glad to have the info.

    oops.  i just realized that i posted in the triple positive thread and i'm not triple positive.  sorry about that and hope it isn't a problem. 

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  • dragonfly1
    dragonfly1 Member Posts: 766
    edited November 2011

    YaYa not a problem to post-that's very interesting to know.Maybe some MOs just want the oncotype score to be absolutely certain they are making the right decision in ordering chemo. I wonder if it has ever come back low on a Her2+ tumor (guess it wouldn't)?-sure makes me think the oncotype is reliable...

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  • Omaz
    Omaz Member Posts: 5,497
    edited November 2011
    yaya - You can be our honorary triple positive!  That's really interesting.
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  • mtnbiker
    mtnbiker Member Posts: 41
    edited November 2011

    they are recommeding chemo first to shrink the t , then rad then surgery. I have a pet-scan today will see onoc next week....Thanks for the reply:) Need to chat to someone :)

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  • Kay_G
    Kay_G Member Posts: 3,345
    edited November 2011

    I had chemo first, but had a larger tumor than you. It was close to the chest wall. I think that was also part of the reason, to shrink it away from the chest wall to get a better margin. I have not heard of anyone getting rads before surgery though. I thought the point of rads was to get rid of any potential cancer cells that might possibly still be there after sx. Are you sure they're recommending rads before sx? In any case, good luck with treatment and come back often, you'll get lots of good info here.

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