TRIPLE POSITIVE GROUP

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  • TonLee
    TonLee Member Posts: 2,626
    edited May 2011

    Michon,

    It's good to read that, thank you.

    I just can't get a good attitude about it, and I'm an upbeat person.  No matter how great I feel, how good the day, as soon as I walk into that room the joy is sucked right out of my body, the music they blast loses its flavor, and everything slows to the never ending grind and beep of that monster machine.  Which labors over me with its giant dilating eye twitching to see my soul.

    lol

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  • nmoss1000
    nmoss1000 Member Posts: 357
    edited May 2011

    Hi Ton Lee I totally know what you mean I am going for TX # 4 tomorrow and I am loathing going. The day before I feel the life being sucked out of me. I am running around getting the house and my life in order before I have to check out indefinitely. I really just want to quit and run away. I am still waiting on an explanation from my onc as to how they decided 6 rounds was the magic number. I was fortunate to be NED after Bi lat and needed the chemo portion for her2 stats only.

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

    NMoss:  I keep seeing NED...what does it stand for?  Had I not had the HER-2+ I 

    wouldn't need chemo either.

    GOOD LUCK tomorrow...#4 has to be better than #3.....mine was horrible!

    Arlene 

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  • dragonfly1
    dragonfly1 Member Posts: 766
    edited May 2011

    NMoss Good Luck on #4...one step closer to the end-stay focused on that! I'm still battling through TCH#5 on day number 12 and not feeling particularly great but thinking about the light at the end of the tunnel...

    Arlene I think NED=no evidence of disease

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  • nmoss1000
    nmoss1000 Member Posts: 357
    edited May 2011

    Hey ladies thanks! # 3 was a monster for me too. Good grief dragonfly day 12?? Holy moly my longest is 7 days! I am hoping it ends soon for you. It is really hard for me to fight something that didn't make me feel bad but it is easy for me to fight chemo because it Makes me feel like hell. The emotional swing of steroids and severe bone pain that lasts 3-4 days is enough to make me want to hurl myself in front of a bus!! The chemo sick is tolerable. This disease has taken more Mentally than physically for sure!

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  • dragonfly1
    dragonfly1 Member Posts: 766
    edited May 2011

    Nmoss I've always been fine after day 10 but this time I've still got the GI blues on day 12-ickkk! just can't shake the cramping, bloating and soreness but I'm hoping it clears up soon. I still have no desire to eat this time which is partly because my taste is not returning at all anymore (in addition to my GI tract being in knots). I found the mental battle to be hardest during TCH #3 and 4 because I still felt like I was in the middle and couldn't see a way out-I felt really down during those two in particular. Now that I'm in cycle 5 I feel like I can deal with anything both physically and mentally because I know it will be over fairly soon and I can begin to recover. Hang in there because you are almost there too!

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  • LisaGH
    LisaGH Member Posts: 242
    edited May 2011

    Hi Dragonfly- sorry you are still feeling bad. I am actually feeling better sooner this cycle (I am also TCH post round 5 day 12)- I wear out easily- but am feeling better other than just no stamina.

    Taste still not back- but GI ok. I agree- getting past 3 was good- 4 even better- hang in there everyone. 

    I cannot believe one week from Wed on 6/1 I'll have the final TC. I am so glad. The weakness is tough- for me the side effects kicked in sooner this time but eased off earlier. I do realize though that the energy is bad- I can do things for a while- then have to rest- then can do activity again. The leg burning is much better unless I stand too long or walk too far. The leg pain was really bad just after Tx 5.

    Hang in there- we can do this! I am getting excited and also dreading and scared about round 6 coming up.

    Take care.

    Lisa

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  • karebear76
    karebear76 Member Posts: 288
    edited May 2011

    carberry: I did the a/c and taxol then had surgery. They found the HER2+ and now want to start TCH. So not looking forward to it. I go to Boston tues for a wed appt for a 2nd opinion follow up. We will see what they say!

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  • pejkug3
    pejkug3 Member Posts: 902
    edited May 2011

    TCH after all that?!  Yeah, karebear76, get another opinion.  I could see Herceptin only, but the whole gamut seems a bit much.

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

    Dragonfly:  Thanks for the NED definition.  Hope you have an easier time with #5....you are almost done.  Hooray!

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  • TonLee
    TonLee Member Posts: 2,626
    edited May 2011

    I think Herceptin has to be taken with chemo....

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  • carberry
    carberry Member Posts: 1,153
    edited May 2011

    karebear,  The reason I asked was because I asked my onc that if they did bone and ct scans and found more or a diff cancer would I have to start chemo again, maybe diff drugs and they said "no" that what I got was enough.  Maybe they are talking about the herceptin for you?   Lets hope you wont have to start the chemo journey all over again.Good luck to you and let us know after your appt.

    To all having chemo...hang in there, it will soon just be a bad memory.  Seems like years ago for me, and its only been about 17wks, maybe cause I am focused on rads now.

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

    TonLee the current studies show that Herceptin actually works better when given with chemo. This is why they do it. Herceptin is still very effective given alone but given with chemo it kinda "boosts" it's effectiveness. It's not unusual for medications and/or chemo to be given in conjunction with other drugs and be more effective.

    granted Herceptin is still fairly new so what it goes with and how long it should be given is still being studied.

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  • nmoss1000
    nmoss1000 Member Posts: 357
    edited May 2011

    Hey Tonlee your right in the sense that it has to given with chemo. Except it was explained to me by my onc it's because Herceptin was never tested any other way. It was too risky.

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  • TonLee
    TonLee Member Posts: 2,626
    edited May 2011

    NMoss, that's what my Onc said too...about the testing.  I've been thinking about you a lot.  I hope you're feeling better.  Keep drinking lots of fluids.  I thought of it as flushing out my system so it could recover a little before the next TX. 

    Lago,

    It will be great when they do some clinical studies with it without chemo...but I dunno how they could do that ethically??

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  • Omaz
    Omaz Member Posts: 5,497
    edited May 2011
    TonLee and Carberry - Have an uneventful week at rads!
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  • TonLee
    TonLee Member Posts: 2,626
    edited May 2011

    Omaz,

    How did you manage being outside?

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  • karebear76
    karebear76 Member Posts: 288
    edited May 2011

    Thanks ladies.

    This info is great to know. I am headed to Dana Farber tomorrow night for a wed am appt. I have been there before so it is a follow up and see what that dr says I should do. She was right on with my onc the first time and I am expecting to hear the same this time.

    I am looking forward to Christmas when chemo and rads should be all behind me.....I hope!!! 

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  • Omaz
    Omaz Member Posts: 5,497
    edited May 2011
    TonLee - Do you mean in the sun?  When I swim I wear a short sleeve overshirt anyway and during rads I wore a shirt with sleeves when I was outside.Even now, 3 months later I don't expose the area to the sun but wear my rashguard in the pool. 
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  • lago
    lago Member Posts: 17,186
    edited May 2011

    Karebear Boston has some of the top cancer treatment places (Dana Farber and Mass General/Harvard). You will be getting the best care.

    TonLee they aways test in mice first. There are women that can't get chemo due to health reasons. Are they all denied Herceptin? That would be horrible.

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  • TonLee
    TonLee Member Posts: 2,626
    edited May 2011

    Yes Omaz...I thought a t-shirt only was 7 spf.?  I don't want to wear a bra, t-shirts are hot...lol.  I'm screwed.

    Lago, I don't know...I have read women on this board say they can't find an Onc to give them just Herceptin....you're right, that would be terrible...better that than nothing...and WE take it for 6 months after chemo......

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  • pejkug3
    pejkug3 Member Posts: 902
    edited May 2011

    KAREBEAR had chemo before.  Would this chemo not cover her receiving Herceptin alone now? 

    I suppose we'll know once she gets to Dana.

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

    TonLee it's about 8 months more for me because I only had 6 rounds of TCH. I have read a few women did manage to get herceptin alone but I'm sure it had something to do with them not being able to do chemo.

    and pejkug I agree that they may decide doing more chemo is too  harsh on the body. It might depend on her health and how she did with the first round.

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  • Omaz
    Omaz Member Posts: 5,497
    edited May 2011
    TonLee - Check out coolibar products.  I like h2owear for the pool.  Both are SPF 50.  Also, I stay out of the sun during the intense hours.  Ii was lucky because I had rads in Jan/Feb!
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  • TonLee
    TonLee Member Posts: 2,626
    edited May 2011

    Thanks Omaz!! 

    Karebear, let us know how it goes...I'm really interested in how they're going to handle your tx.  Good luck!

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  • Omaz
    Omaz Member Posts: 5,497
    edited May 2011
    TonLee - Even now about 3 months after rads my skin is still slightly tan where it was treated.
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  • IsThisForReal
    IsThisForReal Member Posts: 384
    edited May 2011

    My physio therapist (LE) said it may never return to the exact same color.  But mine is getting there, slowly but surely.

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  • Omaz
    Omaz Member Posts: 5,497
    edited May 2011
    Is this for real - In some lights I can barely notice the difference.
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  • lago
    lago Member Posts: 17,186
    edited May 2011

    I have a friend that did rads 2 years ago. Her skin is "tanned" in that area.

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  • IsThisForReal
    IsThisForReal Member Posts: 384
    edited May 2011

    Sounds like it will vary for us, then. 

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