IBC/Breast Cancer Friends

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gailray
gailray Member Posts: 2
Hello - I'm trying to find friends with IBC to share and gain information regarding treatment, etc.... I'm 57, live in TX was dx here in Tyler in May,2010, recently went to M D Anderson in Houston to be evaluated, second opinion, two heads are better than one. Anybody out there needing an IBC friend here I am.

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  • Rague
    Rague Member Posts: 3,653 Member
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    Greetings
    There are several of us here who are IBC. I was DX'd in Aug '09 and doing great now.

    Susan
  • gailray
    gailray Member Posts: 2
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    Rague said:

    Greetings
    There are several of us here who are IBC. I was DX'd in Aug '09 and doing great now.

    Susan

    IBC
    Good for you - are you still in treatment? I've had chemo, surgery, radiation, more chemo and unfortunately the margins weren't cleared at surgery so the cancer has moved to my stomach area and my the right side of my chest where my breast was (cancer was found on my left breast) What about you.
  • disneyfan2008
    disneyfan2008 Member Posts: 6,583 Member
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    gailray said:

    IBC
    Good for you - are you still in treatment? I've had chemo, surgery, radiation, more chemo and unfortunately the margins weren't cleared at surgery so the cancer has moved to my stomach area and my the right side of my chest where my breast was (cancer was found on my left breast) What about you.

    IBC
    sorry I have never heard of this... i'll look it up...
  • dbhadra
    dbhadra Member Posts: 344 Member
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    gailray said:

    IBC
    Good for you - are you still in treatment? I've had chemo, surgery, radiation, more chemo and unfortunately the margins weren't cleared at surgery so the cancer has moved to my stomach area and my the right side of my chest where my breast was (cancer was found on my left breast) What about you.

    I;m IBC too
    I;m getting treatment at the Fox Chase Cancer Center in Philadelphia where Dr. Christafanilli specializes in IBC. 12 rounds of Taxol followed by FEC followed by surgery followed by radiation. A little more than halfway through my Taxol now (week 7). No major side effects so far except weight gain - 7 pounds in 7 weeks!

    I have it in the left breast but most likely will opt for a double mascectomy this summer. I know it will not reduce my risk to zero but want to reduce as much as possible since I have a strong family history of breast cancer. My mom died of it nine years ago Feb 26.

    Has anyone here had FEC for their chemo treatment? Dr. Christafanelli changed my chemo regime from my primary oncologist's regime of 6 rounds of TAC to the 12 Taxol, 4 FEC.

    What specific treatments/chemo have you all had and how were your side effects? Please share as I am anxious about the upcoming FEC.

    We can do it! IBC is scary, but we wil come through!

    Laura
  • Gabe N Abby Mom
    Gabe N Abby Mom Member Posts: 2,413
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    Another one...I was dx Aug
    Another one...I was dx Aug 2, 2010, I'm also triple negative, no mets. I've completed chemo, 6 rounds TAC, and a bilateral mastectomy, 12 of 14 lymph nodes involved. I start rads on Tuesday, 22 days 2 times a day for a total of 44 treatments.

    Do you have specific questions or concerns? I think you'll find this group very supportive and caring, IBC or not. Please come back often.

    Hugs,

    Linda
  • Rague
    Rague Member Posts: 3,653 Member
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    IBC
    sorry I have never heard of this... i'll look it up...

    Imflammatory Breast Cancer

    Imflammatory Breast Cancer
  • Rague
    Rague Member Posts: 3,653 Member
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    gailray said:

    IBC
    Good for you - are you still in treatment? I've had chemo, surgery, radiation, more chemo and unfortunately the margins weren't cleared at surgery so the cancer has moved to my stomach area and my the right side of my chest where my breast was (cancer was found on my left breast) What about you.

    IBC is SO Aggressive!
    I am so sorry that you have mets - I'm lucky so far.

    Short history - I saw my PA in the morning on Aug 8, '09; that afternoon I had a mammo, then a sono, then biopsies; next morning I got the path results - IBC - which basically my PA and the Radiologist had already said it would be. The next time was busy with seeing surgeon, Rads Dr, Chemo Dr, and lots of tests/scans. Had port in on Aug 25, '09 and the next day started 4 A/C (not bad) every 2 weeks. 2 weeks after last A/C had rt. mod. rad. mast. - did get clear margins. 3 weeks after surgery, started 12 weekly Taxol (bad) and a week after last Taxol started 25 daily rads. Am ER+ so on Femara (no SEs) for 5 years (1 year already done). I see my Chemo Dr next Friday for 6 mth check - and my surgeon in April.I do get tired a lot easier but most of the time I'm feeling great - well once this nasty winter leaves the area.

    Take care and you will be in my thoughts and prayers.

    Susan
  • meena1
    meena1 Member Posts: 1,003
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    Another one...I was dx Aug
    Another one...I was dx Aug 2, 2010, I'm also triple negative, no mets. I've completed chemo, 6 rounds TAC, and a bilateral mastectomy, 12 of 14 lymph nodes involved. I start rads on Tuesday, 22 days 2 times a day for a total of 44 treatments.

    Do you have specific questions or concerns? I think you'll find this group very supportive and caring, IBC or not. Please come back often.

    Hugs,

    Linda

    I was diagnosed in July 2008
    I was diagnosed in July 2008 with IBC. i had a reoccurence in June 2010, it spread to my liver and bones. I am currently still in treatment at the same place that dhb is, i am at Fox Chase in Philadelphia and i am being treated by Dr C. If you can, you may want to contact him. He is the worlds expert on IBC...the best. He has devoted his life to treating this and woman with IBC come to him from all over the country. I am lucky to live in Philadelphia. I can give you more info on this if you need it
  • Reikigemgirl
    Reikigemgirl Member Posts: 278
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    I was diagnosed in July 09 with IBC......
    Had 4 rounds of A/C, surgery to remove right breast, then 12 rounds of taxol. I didn't have to have radiation because only one lymph node out of the 10 they took out was cancerous.

    Am ready for reconstruction now and am doing great. I wanted both breasts taken off because of how aggressive IBC is but my insurance company wouldn't pay for it. Pray every day that all stays clear.

    Lurking on this site (only reading posts for awhile) really helped me. The people on this board are a wealth of important information. You found a good board to join. Welcome.

    Vicki
  • Texasgirl10
    Texasgirl10 Member Posts: 668
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    I was diagnosed in July 09 with IBC......
    Had 4 rounds of A/C, surgery to remove right breast, then 12 rounds of taxol. I didn't have to have radiation because only one lymph node out of the 10 they took out was cancerous.

    Am ready for reconstruction now and am doing great. I wanted both breasts taken off because of how aggressive IBC is but my insurance company wouldn't pay for it. Pray every day that all stays clear.

    Lurking on this site (only reading posts for awhile) really helped me. The people on this board are a wealth of important information. You found a good board to join. Welcome.

    Vicki

    I was diagnosed on November 24, 2010
    I just had my 4th round of TAC. I still have 2 more to go. I will have surgery after I complete chemo, then it's off for rads. So far I'm doing ok, but I'm constantly worried that the beast is spreading even though I'm currently in treatment. I try hard not to think about how aggressive IBC is, but to be honest with you it does creep up in my thoughts several times a day. I have found tons of support and knowledge on this board, which has helped a lot.

    Dawne
  • ladybug22
    ladybug22 Member Posts: 646
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    I B C
    i was dx in aug of 07. I have been clean 3 years jan 1 th of this year .
  • disneyfan2008
    disneyfan2008 Member Posts: 6,583 Member
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    Rague said:

    Imflammatory Breast Cancer

    Imflammatory Breast Cancer

    duh...should have figured that out..
    Thanks for info..
  • dbhadra
    dbhadra Member Posts: 344 Member
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    ladybug22 said:

    I B C
    i was dx in aug of 07. I have been clean 3 years jan 1 th of this year .

    IBC specialist and good news!
    Just saw my IBC specialist Dr. Christofennelli at Fox Chase Cancer Center in Philadelphia yesterday; we drive from DC to see him but well worth it!

    Had a follow up MRI at Fix Chase yesterday and good news! Inflammation is reduced quite a bit, he feels that Taxol is working and says it usually continues to work if you see an initial response. So continuing with Taxol,FEC,surgery, and radiation - beat this beast!!!!

    So far, no one can see lymph node involvement on the sonnogram but Dr. C feels it is there given the IBC. More will be revealed at the surgery as I refused to get the auxilliary lymph node biopsy before chemo, on the grounds that it was not going to changemy treatment. Needle bioposy of lymph node didn;t get a good enough piece of it to say for sure.

    Continuing my local treatment and primary oncologist here; seeing Dr. C again in April and then June before surgery.

    It is scary! Hang in there IBC warriors!

    Laura
  • VickiSam
    VickiSam Member Posts: 9,079 Member
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    dbhadra said:

    IBC specialist and good news!
    Just saw my IBC specialist Dr. Christofennelli at Fox Chase Cancer Center in Philadelphia yesterday; we drive from DC to see him but well worth it!

    Had a follow up MRI at Fix Chase yesterday and good news! Inflammation is reduced quite a bit, he feels that Taxol is working and says it usually continues to work if you see an initial response. So continuing with Taxol,FEC,surgery, and radiation - beat this beast!!!!

    So far, no one can see lymph node involvement on the sonnogram but Dr. C feels it is there given the IBC. More will be revealed at the surgery as I refused to get the auxilliary lymph node biopsy before chemo, on the grounds that it was not going to changemy treatment. Needle bioposy of lymph node didn;t get a good enough piece of it to say for sure.

    Continuing my local treatment and primary oncologist here; seeing Dr. C again in April and then June before surgery.

    It is scary! Hang in there IBC warriors!

    Laura

    Laura ...
    I love your attitude .. so inspiring! Thank you for providing positive information, vibes and hope .. to all.

    Vicki Sam
  • Gabe N Abby Mom
    Gabe N Abby Mom Member Posts: 2,413
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    ladybug22 said:

    I B C
    i was dx in aug of 07. I have been clean 3 years jan 1 th of this year .

    I find 3 years 'clean'
    I find 3 years 'clean' inspiring. Thank you for sharing that.

    Hugs,

    Linda