IBC treatment-combo chemo or DD?

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preising
preising Member Posts: 5
edited June 2014 in IBC (Inflammatory Breast Cancer)

Hello Ladies, I was referred to this site from your sisters on another blog and I hope you can help with some insight.  My very dear friend has been recently diagnosed with IBC.  She has received two doses of combo chemo of Cytoxan, Adriamycin, and Taxotere three weeks apart.  Her breast is showing improvement.  I went with her and her husband to another oncologist today to obtain a second opinion.  He would do a Dense Dosing regime every two weeks (four cycles each) of Cuytoxan, Adriamycin, and Taxol, followed by Avastin.  Then mastectomy, radiation, and possibly further chemo.  

 We just don't know which path to take, and my friend is overwhelmed with this!  Does anyone have an experience to share or advice to give on which treatment plan shows the most promise?  I have researched everything I can "Google", and it's a fifty-fifty split on results.  The whole Avastin issue is an entire concern, in and of itself.  

 Any help would be greatly appreciated.  I know my friend and her husband are looking to me for support and guidance, and I feel like crap because I can't get my brain around the two options.  I didn't know that treatment for breast cancer would have so much political "spin" involved.  I'm just looking for experiences and facts......and I'm having a real hard time getting our medical professionals to give a straight story.  Whatever they decide, I will support.  It pains me to think that a person as frightened and sick as my friend would have to filter through this, but I guess she does.  

You ladies are heroes in my minds eye!  Thank you for helping me help a friend.

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  • DianeE
    DianeE Member Posts: 176
    edited June 2008

    The treatment your friend is now having is also known as TAC.  It is the same treatment that I had last fall.  My oncologist told me it was the most aggressive chemo he could give me, but everyone, as your finding out, is different.  He did do a consult with UW-Madison and Mayo clinic with oncologist he knows at each facitlity as well as Sloan Ketterling and they all agreed on my treatment.  Other factors play in, however.  Hormone receptor status, Her2 Neu status, lymph node involement, which I am guessing she has, and any mets.  Avastin is considered the "new" drug in the world of oncology and it has done some good things for other forms of cancer.  I also had mastectomy and then 33 rad treatments, including the super clavicular.   I know it is such a difficult decision.  Have you asked both physicians how many IBC patients they have treated?  What reasoning is the 2nd onc giving for the proposed plan he has?

    Good luck to your friend.  She is lucky to have you.  My friends were our rock during our journey as well.

    Diane

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  • preising
    preising Member Posts: 5
    edited June 2008

    This doctor said that he has treated 150 women with IBC over a twenty year period and most doctors in our region see one each year.  I don't know if that is true, but I also didn't realize how rare this cancer is.  He said that the treatment my friend is currently getting may work, but that is not the treatment plan he would chose and he feels that his plan is more aggressive.  It is such a difficult decision, given the circumstances.  I have so many friends who are breast cancer survivors, damn this disease, but I don't think any of them have had this type of cancer.  One thing that really terrified my girlfriend is that he said we couldn't be in the room with her during any of her treatments.  He said that OSHA doesn't allow it and all cancer centers that allow family/friends to sit with her during therapy are violating some law that he wouldn't risk.  Every treatment center that I know of around here encourages the patient's circle of support to be with them.  My friend just freaked out over the thought that her husband and I couldn't be with her during chemo.  Do you think that sounds odd?  She has already lost her hair and feels at the bottom of the barrel.  I just can't imagine leaving her alone for 2-3 hours without someone to hold her hand.  I told her husband that I think either treatment plan is okay, but the most important thing is that they feel comfortable with the entire program.  We can always change course midway if my friend's cancer isn't responding.  The Avastin protocol is worrisome.

    Lots of decisions to be made in a short time.  Your input is invaluable to me, and I thank you for your time.   Next week I take my friend to get a new swanky head of hair, compliments of Cancer Family Care.  My heart hurts for this dear sweet lady...  

     Peggy 

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  • FloridaLady
    FloridaLady Member Posts: 2,155
    edited June 2008

    Peggy,

    I have never heard any place not let a love one near during treatment.  I have been to three top cancer centers and never saw this.  My heart goes out to your friend that has to be so isolated.  This might be a sign to move doctor's in it self.  This is not a supportive environment. I had TAC 2 1/2 years ago.  Than followed by Gemzar, Carbo & Avastin after a recurrence of IBC.  I'm back in this protocol for a 2nd time. Avastin is not that hard of a chemo unless you are on it long term. 

    Your friend is so lucky to have you.  Hang in there...as she settle's into treatment things do settle down for a while.  This will give you more time to get educated what will come next and how to best support her.

    Flalady

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited July 2008

    Whoa!  Back up the bus here....I'm not sure that is true!  I've never been to a treatment facility that didn't let you have at least one family or friend with you.  That would send up a big red flag to me.  The facility where the doctor I go to now only allows one person but that is because of a space issue and not some OSHA regulation.  OSHA?  Now if they had said AMA that might have been plausible.

    If you like the original treating doctor but want to go with the second regime... many doctors will allow the patient to choose their treatment.  Why don't you ask the first doctor if he will follow the protocol that you want to use.

    I know of several ladies who have gone to facilities like MD Anderson for a consult and their local doctor has used the protocol that they recommended.

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  • Bookworm
    Bookworm Member Posts: 13
    edited June 2008

    Sounds similiar to my treatment. I had dense dose or dose dense chemo every two weeks for 8 rounds. AC chemo-followed by Paclitaxol. Then breast was removed followed by 33 radiation treatments. I was supposed to have 4 more rounds of chemo but I was put on Arimadex instead.

    Hope all is going fine for you all.

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  • DianeE
    DianeE Member Posts: 176
    edited June 2008

    I would really question the "OSHA" comment.  I actually work at the Regional cancer center and we do strict guidelines to protect employees as  well as patients and their families, but we do not restrict anyone.  I take that back, children under 12 are not allowed in the chemo area, but over 12, bring as many as you would like.  We as employees wear protective gowns to mix and administer the chemo as well as masks when first accessing the ports, but no, OSHA not restricting the families.  I like the idea of a previous poster.  See if the MD your friend likesis open to trying the regimen of the second MD.  Good luck on your hunt for the wig.  That was a really hard day for me.

    DIane

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  • nash
    nash Member Posts: 2,600
    edited June 2008

    Hi, Peggy, I followed you over from your other thread. Smile Glad you got good input from the IBC gals over here--knew you would!

    On the subject of no visitors in the chemo room due to OSHA regulations: I have never, ever, heard of such a thing. We have a lot of cancer in our family and thus a lot of people on chemo at one time or another, and no one ever had that restriction placed on them. And the assorted family member have been treated at a variety of cancer centers around the country.

    Both my late Stage IV bc mom and I were on chemo at the same time last year, and not only could I accompany her, but my husband came with me to my treatments, and I brought my two kids, ages 6 and 9, into the chemo room all the time (good thing we weren't at your center, Diane, with the no kids under 12 rule! Sealed).

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  • lauraof5
    lauraof5 Member Posts: 3
    edited July 2008

    hello, my sister is almost 49..she was diagnosed with IBC  in july of last year. it has spread to her spine and her brain..she now has phenumonia and a clot in her lung.. if any one could give me any time limit that i might realistically have left with her?

    she is on "the last ditch" chemo pill...and then they said there is not much more they can do for her?

    she has had all the radiation and chemo allowed?

    I am in fl. she is in mn. i am flying up there on the 12th?

    what can i do while there for 8 days to make a comfort difference for her?

    also. my sister who is 47 was just diagnosed with ductal 3 weeks agao, and my mother is currently under going chemo/radiation for her 2nd occurance. this is all going on now....and yes i have sent in my blood sample for the brac tests last week...uggh!

    thanks

    laura 1 out of 5 girls in the family

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  • nash
    nash Member Posts: 2,600
    edited July 2008

    Oh gosh, Laura, that's more than one family should have to go through. I'm so sorry to hear all that.

    It's really hard to say how long your IBC sister has left, but I think you'll be OK leaving on the 12th. It sounds like she's on Xeloda?

    As far as what to do while you're there, I'd suggest asking her what she's up for. Maybe she's up for talking. Maybe she's only up for you sitting there, holding her hand. But just you being there will mean a lot to her.

    My Stage IV bc mom passed away in February, and one of her sisters flew in a couple days before she died. My mom was weak, but able to sit there while my aunt talked to her. My mom was even able to share a little bit of family history, which my aunt wrote down. 

    Good luck with your BRCA testing. Hugs to you and your family. 

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  • lauraof5
    lauraof5 Member Posts: 3
    edited July 2008

    thank you for your response..i am just hoping to still have "my sister" able to enjoy just a bit of time with me.

    thank you for your prayers

    laura

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  • jacqueline56551
    jacqueline56551 Member Posts: 48
    edited July 2008

    Hi Ladies: As I am reading the replys I couldn't help but be supprised by aggressive treatment people received. Perhaps I shouldn't be supprise as this is an an aggrressive form of BC. I got 3 rounds of FEC and 3 rounds of taxotere, mastectomy(I choose bilateral), and then 25 rad treatments. When I read the posts I feel under treated; not that I wasn't happy to be done with chemo! I assume every oncol does things differently.  Jacqueline

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