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09-13-2006, 08:26 PM
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#1
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Webmaster
Join Date: Feb 2005
Location: Home of the "Flying Tomato"
Carlsbad, CA
Posts: 2,036
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IBC Message Forum ??
We have several members on this site who have IBC. IBC like HER2 has its own set of rules.
Is there any interest in having a seperate message board for IBC patients?
Regards
Joe
__________________
A Proud webmaster to the internet's most informed, educated, COMPASSIONATE and caring group of breast cancer survivors.
Illegitimi non carborundum
My Album
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09-14-2006, 05:18 AM
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#2
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Senior Member
Join Date: Feb 2005
Location: LI, NY
Posts: 660
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Hmmm...a separate message board just for IBC??? Joe - I really don't think that is needed here. There are other sites specifically for IBC, but they just don't get the traffic needed to keep them going. Some of the sites are also VERY upsetting. I'd rather post on a board that gets lots of uplifting support. Although IBC has some differences, it also has many similarities to other bc's. I have learned that cancer is cancer whether it be IBC, ILC, IDC or leukemia...It all sucks! I welcome other opinions on this.
__________________
Maryann
Stage IV Inflammatory BC 1/00
Mod Rad Mastectomy 24nod/5+
Adriomycin Cytoxin Taxol
Tamoxifen 4 1/2 yrs
Radiation - 32 x
Metastatic BC lung/liver 10/04
thorocentesis 2x - pleurodesis
Herceptin Taxatiere Carbo
Femera/Lupron
BC NED 4/05
chemo induced Acute Myeloid Leukemia 5/06
Induction/consolidation chemo
bone marrow transplant - 11/3/06
Severe Host vs Graft Disease of liver
BC mets to lung 11/07
Fasoladex Herceptin Zometa Xeloda
GVHD/Iron overload to liver
Avascular Necrosis/morphine pump 10/10
metastatic brain tumor
steriotactic radiosurgery
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09-14-2006, 08:24 AM
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#3
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Senior Member
Join Date: Nov 2005
Location: Northern Calif.
Posts: 981
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Joe,
Thank you for the thought. The tx I have received so far seems to be the same as tx for other bc's. I do appreciate your hard work for sure!
Lexi
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09-14-2006, 10:04 AM
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#4
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Senior Member
Join Date: Feb 2005
Location: Norridgewock, Maine
Posts: 778
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I would like to see a separate message board for IBC however, if it didn't get that much traffic we could do something different. I am always interested in talking to other IBC'ers and looking for those close to me right now there is no one!! There are those that think its not that much different however, my oncologist keeps reminding me this is IBC so we have to stay on top of it with good follow up. This is changing on how it is being treated and with new drugs. hugs, Sandy
__________________
Dx. 03/01, Rt. IBC
AC/Taxatere
Rt. MRM-with graft Lt. simple
5 rads-skin mets
Herceptin, taxol, carboplatin (taxol seem to be the magic drug)
Navelbine & xeloda (did not work)
topical miltex for skin mets
Tykerb/xeloda
thoracentesis x 2 left lung fluid shows cancer cells
Port removal (4 years) with power port replacement
Doxil
Updated 05-07 Scans show no bone or organ involvement we shall see!
I shall not pass this way again. Any good I can do or any kindness that I can show let me not defer or neglect it for I shall not pass this way again.
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09-14-2006, 11:17 AM
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#5
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Senior Member
Join Date: Sep 2005
Location: Central Coast, CA
Posts: 3,207
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I am not an IBC-er. I understand that it is a different animal, and want those who need to connect with each other to be able to do so in whatever way is most supportive to them.
My hope would be, if a separate forum is established, that those who contribute SO MUCH to the main forum (Sandy H, Mary ann and MANY others) would continue to do so. I would really miss the input of so many of our beautiful members.
Of course, I could just go lurk there, too!
Thanks, Joe for continuing to work so hard for all of us.
__________________
Chris in Scotts Valley
June 2002 extensive hi grade DCIS (pre-cancer-stage 0, clean sentinal node) Mastectomy/implant - no chemo, rads. "cured?"
9/2004 Diag: Stage IV extensive liver mets (!) ER/PR- Her2+++
10/04-3/05 Weekly Taxol/Carboplatin/Herceptin , complete response!
04/05 - 4/07 Herception every 3 wks, Continue NED
04/07 - recurrence to liver - 2 spots, starting tykerb/avastin trial
06/07 8/07 10/07 Scans show stable, continue on Tykerb/Avastin
01/08 Progression in liver
02/08 Begin (TDM1) trial
08/08 NED! It's Working! Continue on TDM1
02/09 Continue NED
02/10 Continue NED. 5/10 9/10 Scans NED 10/10 Scans NED
12/10 Scans not clear....4/11 Scans suggest progression 6/11 progression confirmed in liver
07/11 - 11/11 Herceptin/Xeloda -not working:(
12/11 Begin MM302 Phase I trial - bust:(
03/12 3rd times the charm? AKT trial
5/12 Scan shows reduction! 7/12 More reduction!!!!
8/12 Whoops...progression...trying for Perjeta/Herceptin (plus some more nasty chemo!)
9/12 Start Perjeta/Herceptin, chemo on hold due to infection/wound in leg, added on cycle 2 &3
11/12 Poops! progression in liver, Stop Perjeta/Taxo/Herc
11/12 Navelbine/Herce[ptin - try for a 3 cycles, no go.
2/13 Gemzar/Carbo/Herceptin - no go.
3/13 TACE procedure
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09-14-2006, 12:17 PM
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#6
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Member
Join Date: Sep 2006
Posts: 10
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I agree that the IBC'ers on this list are in the minority and there are other IBC lists such as ibcsupport.org and ibcresearch.org which have 300-400 members and are very active on a daily email basis. It is a very different animal from regular breast cancer. I don't think a separate message board on this list would be necessary.
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09-15-2006, 10:54 PM
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#7
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Senior Member
Join Date: Mar 2006
Location: Vancouver, Canada
Posts: 39
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I would like to see a separate forum for IBC'ers--but I say this mostly because I am an IBC'er and I find it tough sometimes to get helpful and informative information. It's also difficult to locate someone with similarities to myself so it would be great to hear specifically from other IBC'ers. Of course I totally understand if it would just "complicate" (for lack of a better word right now--does the chemo brain ever depart??) this site too much. In any event, thanks for this always informative site and thanks to everyone who contributes to it regularly. Take care everyone.
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09-18-2006, 07:36 PM
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#8
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Senior Member
Join Date: Feb 2005
Location: Norridgewock, Maine
Posts: 778
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I would most certainly, stay on this forum even if an IBC one was started. I am her2 positive and each one of us is different with IBC. I have had e-mails off this board from other IBC'ers wanting a more personal contact. I am o.k. with what ever Joe and the rest want to do. This is a great board and so I am happy either way. Sandy
__________________
Dx. 03/01, Rt. IBC
AC/Taxatere
Rt. MRM-with graft Lt. simple
5 rads-skin mets
Herceptin, taxol, carboplatin (taxol seem to be the magic drug)
Navelbine & xeloda (did not work)
topical miltex for skin mets
Tykerb/xeloda
thoracentesis x 2 left lung fluid shows cancer cells
Port removal (4 years) with power port replacement
Doxil
Updated 05-07 Scans show no bone or organ involvement we shall see!
I shall not pass this way again. Any good I can do or any kindness that I can show let me not defer or neglect it for I shall not pass this way again.
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09-25-2006, 03:16 AM
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#9
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Senior Member
Join Date: Oct 2005
Location: Sydney Australia
Posts: 105
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I too am an IBC-er, but I find more difficulty on this site trying to sort out who is metastatic and who is not, especially when reading about statistics on recurrence etc. I find it more difficult to wade through the messages looking to see a response from someone who is metastatic (same as me) than any thing else. Herceptin users (metastatic that is) are Herceptin users, IBC or not.
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09-25-2006, 03:50 PM
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#10
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Senior Member
Join Date: Jun 2006
Location: san luis obispo, ca
Posts: 1,150
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Hi Joe,
I would love a seperate IBC site, I agree with Sandy. I feel somewhat lost among the crowd and would really like to connect to other IBC's. I love the Her2 support, but IBC is in a family of its' own. Sometimes we feel there is no one to talk to as it is the rarest form of breast cancer. I will stay on this site whatever you decide, but please count me in as a YES! Thank you and God Bless, Vickie H
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09-26-2006, 12:33 PM
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#11
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Founder - HER2 Support Group
Join Date: Feb 2005
Location: Carlsbad, CA
Posts: 361
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IBC; Getting the Info
Vickie
Sandy H is an important asset to our group. She has become very knowledgeable in her diisease and does her advocacy in her community and on our website. She also is a recent reipient of the new Tykerb chemo . Sandy has been an ambassador for our group as she has travelled with us to the San Antonio Breast Cancer Symposium for the past 3 years on her mission to update any info on IBC. The next Symposium in Texas is in Dec. We will be there, and will update any info obtained there by the oncological researchers, as part of our mission to keep us all well informed about future developements.
It is always a good idea to educate yourself about the IBC form of HER2 brest cancer.
Hugs,
Christine
Last edited by Joe; 09-26-2006 at 12:56 PM..
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09-26-2006, 08:21 PM
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#12
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Senior Member
Join Date: Feb 2005
Location: Norridgewock, Maine
Posts: 778
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Christine thanks for sharing this information. You and Joe have been a big part in keeping me up to date on this disease! I am not sure if I would still be here if it wasn't for you both. The Her2 support has been my life line sent by God. Even my husband tells his friends this. This disease is changing I can see it in the 5 years I have been on this journey and that is HOPE for us all! New drugs are working, word is getting out, people need to know the symptoms and get them checked out ASAP! Even my oncologist asks me questions and is always comparing info with me. He is very anxious for Tykerb to get released and tells me I will probably be the first to know and I told him I think Joe and Christine will be!!! He said he wished all his patients were as proactive his job would be much easier especially the IBC'ers where no two patients are the same. I am looking forward to this forum and hoping to meet more IBC'ers. Again thanks Christine and I can hardly wait to see what is new in San Antonio this year. May God Bless you and Joe as you are on a wonderful mission here. hugs, Sandy
__________________
Dx. 03/01, Rt. IBC
AC/Taxatere
Rt. MRM-with graft Lt. simple
5 rads-skin mets
Herceptin, taxol, carboplatin (taxol seem to be the magic drug)
Navelbine & xeloda (did not work)
topical miltex for skin mets
Tykerb/xeloda
thoracentesis x 2 left lung fluid shows cancer cells
Port removal (4 years) with power port replacement
Doxil
Updated 05-07 Scans show no bone or organ involvement we shall see!
I shall not pass this way again. Any good I can do or any kindness that I can show let me not defer or neglect it for I shall not pass this way again.
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09-30-2006, 10:37 AM
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#13
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Senior Member
Join Date: Feb 2006
Location: Acworth, GA
Posts: 2,104
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I do not have IBC but feel that it would be great to have a separte place for IBCers. I know that I would be lurking there as well.
__________________
Kate
Stage IIIC Diagnosed Oct 25, 2005 (age 58)
ER/PR-, HER2+++, grade 3, Ploidy/DNA index: Aneuploid/1.61, S-phase: 24.2%
Neoadjunct chemo: 4 A/C; 4 Taxatore
Bilateral mastectomy June 8, 2006
14 of 26 nodes positive
Herceptin June 22, 2006 - April 20, 2007
Radiation (X35) July 24-September 11, 2006
BRCA1/BRCA2 negative
Stage IV lung mets July 13, 2007 - TCH
Single brain met - August 6, 2007 -CyberKnife
Oct 2007 - clear brain MRI and lung mets shrinking.
March 2008 lung met progression, brain still clear - begin Tykerb/Xeloda/Ixempra
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10-03-2006, 04:41 PM
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#14
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Senior Member
Join Date: Jun 2006
Location: san luis obispo, ca
Posts: 1,150
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Thank you, Kate. I feel it is a great and neccessary thing to have a seperate forum for IBC. It is not at all the same as other cancers. Much love anf hope to you, Vickie H
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10-10-2006, 06:43 PM
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#15
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Member
Join Date: Nov 2005
Location: Southern California
Posts: 8
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Ibc
I would love to see an IBC forum. I've checked out other IBC sites, but they are very depressing. Everyone here is very positive and uplifting, so I'm sure the IBC site would be too. We IBC'ers really do need to stay on top of our disease and any new research/treatment regarding it.
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10-10-2006, 08:46 PM
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#16
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Webmaster
Join Date: Feb 2005
Location: Home of the "Flying Tomato"
Carlsbad, CA
Posts: 2,036
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Well this is your forum...please use it.
Rergards
Joe
__________________
A Proud webmaster to the internet's most informed, educated, COMPASSIONATE and caring group of breast cancer survivors.
Illegitimi non carborundum
My Album
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10-14-2006, 04:09 PM
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#17
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Senior Member
Join Date: Feb 2005
Location: Norridgewock, Maine
Posts: 778
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Joe is there someway of putting this out there for more people to see? If I didn't know it was here and missed the posting where you announced it I wonder how I would know about it. Maybe, I am missing something here. Sandy
__________________
Dx. 03/01, Rt. IBC
AC/Taxatere
Rt. MRM-with graft Lt. simple
5 rads-skin mets
Herceptin, taxol, carboplatin (taxol seem to be the magic drug)
Navelbine & xeloda (did not work)
topical miltex for skin mets
Tykerb/xeloda
thoracentesis x 2 left lung fluid shows cancer cells
Port removal (4 years) with power port replacement
Doxil
Updated 05-07 Scans show no bone or organ involvement we shall see!
I shall not pass this way again. Any good I can do or any kindness that I can show let me not defer or neglect it for I shall not pass this way again.
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10-15-2006, 06:54 AM
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#18
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Senior Member
Join Date: Jun 2006
Location: san luis obispo, ca
Posts: 1,150
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Hi Sandy, I agree that this is hard to find. Maybe there are not many with IBC that know about it or possibly go to other sites. Hope you are doing well. Love, VickieH
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10-15-2006, 06:57 AM
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#19
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Senior Member
Join Date: Jun 2006
Location: san luis obispo, ca
Posts: 1,150
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Hi Sandy, I agree that this is hard to find. Maybe there are not many with IBC that know about it or possibly go to other sites. Hope you are doing well. Love, Vickie H
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10-15-2006, 04:05 PM
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#20
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Senior Member
Join Date: Feb 2005
Location: Norridgewock, Maine
Posts: 778
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Thanks Joe, as always you and Christine listen to our needs and take them to heart. This is so much better and easy for those of us to find. I think we will see more traffic on this site as time goes. Thanks again for all your hard work. Sandy
__________________
Dx. 03/01, Rt. IBC
AC/Taxatere
Rt. MRM-with graft Lt. simple
5 rads-skin mets
Herceptin, taxol, carboplatin (taxol seem to be the magic drug)
Navelbine & xeloda (did not work)
topical miltex for skin mets
Tykerb/xeloda
thoracentesis x 2 left lung fluid shows cancer cells
Port removal (4 years) with power port replacement
Doxil
Updated 05-07 Scans show no bone or organ involvement we shall see!
I shall not pass this way again. Any good I can do or any kindness that I can show let me not defer or neglect it for I shall not pass this way again.
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