TRIPLE POSITIVE GROUP

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  • LisaGH
    LisaGH Member Posts: 242
    edited June 2011

    Lago- glad you are feeling better. I will be having my exchange surgery in 10 days (if my hemoglobin is ok)- getting nervous...

    Yaya5- I can relate to what you are saying- I too thought initially I was having a lumpectomy. The tests and md visits initially just kept getting more complex. Ended up w/ mx (i chose bilateral) and then full 6 rounds of TCH. One step at a time. Early on a physician I trusted told me to just take one step and piece at a time. Now almost 6 months later, I understand what she was telling me. It's too much otherwise. Will be thinking of you. Lots of help and support on these boards- that gets us all through!

    Lisa

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

    Congrats Lago!  Glad you're doing well. 

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  • achpurple
    achpurple Member Posts: 290
    edited June 2011

    Before my insurance deductible was met, I saw an EOB that my onc billed my insurance co. $9,000.00 just for my Herceptin!  And another charge (don't remember how much) for administering it.  I'm sure Medicare coverage is different, things will work out, take one day at a time so you don't get information overload.

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  • Fitz33
    Fitz33 Member Posts: 243
    edited June 2011

    ArleneA, I got a prescription from my doctor for a compression sleeve and took that to a store that specializes in breast prosthesis, bras, etc. for mastectomy or lumpectomy patients.  You have to be fitted properly and you'll find that it's rather tight to get on.  I've worn mine on a flight recently to and from and it was okay.  You'll need to use a rubber glove to get it up all the way on your arm (for traction).  That was the first time I've used the sleeve and I left it on for the entire day of traveling hoping that would help. 

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  • lago
    lago Member Posts: 17,186
    edited June 2011
    achpurple The charge on my bill from the insurance for Herceptin and infusion is 34,000! Granted there is an arranged price with the insurance so it is discounted substantially but yes that was an eye opener.
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  • Omaz
    Omaz Member Posts: 5,497
    edited June 2011
    lago - glad you are recovering well.  Nice to get one more step out of the way!  Out of curiousity, are you getting 17 or 18 herceptins?  My onc just upped me to 18 because the computer miscalculated for 17. 
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  • lago
    lago Member Posts: 17,186
    edited June 2011

    I always wonder why I was only getting 17. I see my onc a week from Tuesday. I'll ask then but I'm scheduled for only 17.

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  • Omaz
    Omaz Member Posts: 5,497
    edited June 2011
    lago - let me know what she says.
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  • lago
    lago Member Posts: 17,186
    edited June 2011

    OK I put it on my list of things to ask/report

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  • Omaz
    Omaz Member Posts: 5,497
    edited June 2011
    Thanks Smile (I forgot to say please!)
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  • sewingnut
    sewingnut Member Posts: 1,129
    edited June 2011

    YaYa,

    If the Herceptin is a covered charge by Medicare then your secondary insurance should pick up the balance according to your plan. When they do herceptin only they will also charge a chair fee believe it or not.

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  • tamos
    tamos Member Posts: 30
    edited June 2011

    Omaz and Lago I am getting 18 Herceptin treatments.  I started Aug 4 2010 and my last one will be July 27.  YAH!!! 

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  • Omaz
    Omaz Member Posts: 5,497
    edited June 2011
    tamos - you are almost done!  Are you going to get your port out?
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  • tamos
    tamos Member Posts: 30
    edited June 2011

    Omaz, I saw my BS on Tuesday and asked her when and she said to talk to the oncologist. It would be up to the two of us. She said some have it taken out right away some leave it in for 6mo to a year!!  Said some MO like to leave it in a tad longer if they feel you may need it.  Don't know that I like that!!  However I have been lucky and never had a probelm with it as some others have.  It does stick out like a sore thumb but unless I wear a spaghetti strap it's usually not visable.  I have read on here that some have them removed in the doctors office so I asked that question too.  She does not like to take them out in the office, said she thought in her opinion it was cruel to the patient.

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  • Omaz
    Omaz Member Posts: 5,497
    edited June 2011
    tamos - My surgeon removes them in the OR.
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  • Mantra
    Mantra Member Posts: 968
    edited June 2011

    I have some questions that I'm hoping you'll be able to answer. My sister is Triple positive and had surgery about a week ago.

    I'm trying to get a handle on chemo and drugs. I've been reading the posts and so many different names are mentioned.

    What are the names of the chemo used for triple positive? What are the names of the drugs? Also, one of the posts talked about a different drug needed to prevent from brain mets? What kind of tests should she be having? MRI? CT scan? As well, people have mentioned score types etc. Any info on this would be greatly appreciated.

    This has been a battle from the get go and we've had to fight every step of the way from surgery to antibiotics. She's now fighting an infection because she wasn't given any antibiotics post op. It's under her arm and even the area in her shoulder blade is swollen and hot.

    I just want to make sure when we see the oncologist, I have a good understanding of what treatments she should be getting and that they are doing everything they should be.

    She also has severe allergies to an unbelievable amount of drugs as well as major stomach problems and intolerances. Any tips on things she should be doing to help her through her treatments?

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

    Mantra although your sister is triple positive she may not get the same treatment as me. There many other things to consider. I would highly recommend you seek a 2nd opinion especially since you don't have a lot of faith with her current treatmen..

    I had 6 rounds of Taxotere, Carboplatin and Herceptin… I will continue Herceptin for a full year. I got these treatments every 3 weeks. I am also taking Anstrozole (generic Arimidex). I started taking that several weeks after ending chemo.

    This link is to the NCCN Guidelines: linky  If you scroll down you will find the PDF for breast cancer. This is an excellent guide to read and help you discuss with her onc.

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  • Mantra
    Mantra Member Posts: 968
    edited June 2011

    Thanks Lago. That link is extremely helpful.

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

    Mantra  Maybe when your sister is feeling better you can recommend she join this thread, the information here is priceless.  You are a great sister to be helping her with this process.  Once you find an oncologist that you fell comfortable with and can trust you will be on your way to treatment, and Lago was right the computer has a weath of sites to learn about the drugs and treatment.  Good luck to you both

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

    Lago,

    How are you feeling?

    How do the breasts look?

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

    I feel great. Off the tylenol today. Still tender but nothing huge… granted I don't feel well enough to power walk… not that they would let me. I was told no bouncing of the boobs.

    Right one is a little squarish on one side but he had to do extra work there so It's swollen. Overall I think they look pretty nice. I'm about the size I would be with my old boobs in a push up bra. It will be interesting to see once they put me in a bra what I really look like. My PS doesn't use compression bras. I just have a compression band on the upper pole. Later I guess he puts the band on the lower pole.

    The nurse said over the 25 years or so he has switched a few times regarding the bra. His feeling is the compression bra can limit the blood supply which isn't good for healing. Interesting that everyone has a different approached. I'm just happy not to be in a black bra although I do have this white band pretty high up wrapped around my arm pits).

    I did get the style 15 natrelle/allergan 397cc

    Thanks for asking. 

    (I may repost this in the other thread sorry for the repeat.)

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

    Glad to hear it went well!!

    Looks like I am flying to Texas for my exchange later this year....do you think there will be any issue with flying?

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

    Arlene, I'm not sure you need one if you have no symptoms. I just flew for about a month straight...2 6 hour flights overseas included. I have never had issues flying, and have flown quite a bit since surgery over a year and a half ago.



    I started neratinib trial today. Hoping for se. : )



    If I see any major liver enzymes creeping up or if ejection fraction changes I will probably discontinue. I will keep my fingers crossed!

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

    Lago...happy to hear you are on the mend. I have a square boob too.Your post made me laugh. I can have more grafting to smooth it out, but I despised the whole fat graft process...OUCH!!!! So, it looks round if I squint. For now, I am fine with that!

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

    Do you have your device card for you TE's and Port? You will need those. I know my PS has all sorts of instructions for folks that come in for surgery from out of town. Why Texas?

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

    Lago,

    Yes I have a device card for my port, only one TE, but I don't have it for that....

    My PS is moving to Texas and wants me to come there for the exchange.  Since he's been with me from the get go, and the person replacing him in my network here is RIGHT OUT OF SCHOOL..lol, I am inclined to follow him. 

    My husband will accompany me.  But I was wondering if there would be any issues with flying and pressure?  I guess that doesn't make sense though.  Just thought you might have some insight since you are just a few days out......

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

    Just an issue if you have LE or are at risk for LE. Wear your sleeves. I think you need to put them on 1-2 hours before and leave them on 1-2 hours after landing.

    Totally understand now. Good idea.

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  • Omaz
    Omaz Member Posts: 5,497
    edited June 2011

    Good advice, don't take that sleeve off right away when you land!

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  • dragonfly1
    dragonfly1 Member Posts: 766
    edited June 2011

    Lago So glad to hear that you are recovering well!

    I had my first 3 week dose of Herceptin last week and I'm now experiencing terrible soreness in my arms and legs. I find that it's really hard to get moving once I've been sitting down. Is this just leftover from chemo or is this the Herceptin? I had Rads #4 today and a MUGA scan but I'm feeling more exhausted than I expected-fell asleep during the MUGA and then slept for hours when I got home... 

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

    Thanks Lago.  I don't have LE.  Was evaluated and nadda.  I don't have a sleeve.  But it's good to know.

     Dragon,

    I felt rads from the very first week.  I know people say you generally "don't" but I learned that we all receive different doses of radiation.  Therefore some women feel it sooner than others, and some women burn worse than others, etc.  My RO said I had the max he could give me and I believe it....totally wiped me out.

    I don't have muscle stiffness, but my joints are KILLING me.  I'm hoping it's a combination of rads and Tamox, so I started Glucosamine to try and help with it. 

    I find Rads way more draining than chemo ever was....but I wasn't really exhausted during chemo, that just wasn't one of my SE..so that may not be a fair comparison.  Herceptin also makes me tired the afternoon after my 3 week tx.

    There are so many variables.....

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