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Debris 
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Joined: Jun 07 2010 Location: Forsyth,Georgia Status: Offline Points: 756 |
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 Topic: I B CPosted: Oct 02 2011 at 4:21am |
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It is now official, I have IBC in addition to the TNBC. According to Dr C., the new Dx is unrelated to the original cancer.
I've been pu onto FEC chemo protocol, with first infusion on last Friday. Saturday early morning, lips started swelling, in addition to the swelling already happening. Swallowing & breathing more difficult. Wasnadmitted overnight to Mercy Fitzgerald ICU, so that they could monitor more closely, but I'm being transferred to Fox Chase today, as of course they have all the results of last week's tests, and can better relate what is happening to either side effects or to cancer progression. So we are still in PA, and DH is kept busy changing flights, accommodations, next week's appointments, etc., etc., as well as running back and forth, for me. I Love that man! I know there are a few Forum members who have had IBC happen after TNBC, and I hope we can all exchange experiences, etc., etc., of this iBC journey? I'd love to hear from you! Take care. God Bless. (edited to fix typos!) Edited by Debris - Oct 02 2011 at 6:17pm |
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4/12 Xeloda/Tykerb
2 Carboplatin 12/11 Dx IA 9 Gemzar/Taxotere Dx IBC:FEC 5 Ixempra/Sprycel 2 25 Rad 10/10 BRCA1-/2suv 9 NED 6 Stg4 Grd3 many nodes no Sx/Rad. Taxol/Avastin 06/08 Dx DCIS 0/SN Rads/AIs |
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123Donna
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Joined: Aug 24 2009 Location: St. Louis, MO Status: Offline Points: 13510 |
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Posted: Oct 02 2011 at 11:05am |
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Deborah,
I think I may have asked this in another thread, I apologize just trying to learn more about IBC. So the new cancer (IBC) isn't related to the TN you had? Is it a new type of cancer and not a recurrence? I know this is so scary for you and hope you can get some relief with the nodes and breathing issues. I applaud everyone going through IBC your willingness to educate others. Donna |
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DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15 |
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Barbi
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Joined: Jan 04 2011 Status: Offline Points: 471 |
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Posted: Oct 02 2011 at 11:08am |
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Debris, Prayers that they will quickly get this under control.
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10/10,age49,St3,gr3,5+cm,1 node,BRCA-,T+Cisplatin+Rad0001(or placebo),Lump 1+cm,AND 0/15,AC,rads finished 7/6/11.Mets bone, liver,mamm node 8/11,abrax/tigatuzamab failed.Started bicalutamide 11/16/11.
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dmwolf
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Joined: Jan 22 2009 Location: Berkeley, CA Status: Offline Points: 3619 |
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Posted: Oct 02 2011 at 5:09pm |
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Hi, Deborah. I'm so sorry to hear about the IBC. What a crappy turn of events this is.
What makes them think it is a completely unrelated cancer? Personally, I would be inclined to think it probably evolved from the 'old' breast cancer, unless there was a huge qualitative change like a flipping of receptors from ER- to ER+. Isn't it in basically the same area, in the skin of the neck above where hey positive nodes were/are? On the positive side, I've heard in a vague way that there are new drugs coming available for IBC, possibly something with an immune modulating component. If I learn more, I'll let you know. Steve might be able to hook you up with a trial of this type. love you, d |
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DX 2/08@43 stg II IDC; gr2,0 nodes. Neoadj chemo, first ACx2 (fail) then CarboTaxotereX6(better). Lump, Rads done 11/08; Clodronate. False alarm queen: PetCT lung & TM marker. NED. PBM w/recon 9/10.
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zacar
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Joined: Jul 09 2010 Location: Sherman Oaks,CA Status: Offline Points: 299 |
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Posted: Oct 02 2011 at 5:19pm |
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Oh Deborah, I am so sorry girlfriend. I'm glad you are with Dr. C. He is the best. Unfortunately, he is so far away for me.
I hope you get some relief from the swelling quickly. I am on Abraxane and so far I don't know if it's working or not. The redness seems to be going away as well as open sores but my homeopath made me a spray and I know that has helped tremendously. After the next round I will have a PET/CT and I will know more. I also have a frontal lobe 4 mm tumor and a blood clot in my stomach. I plan on conferring with Dr. C. very soon. That's my story. You are in the best hands. Please let us know how you are doing, etc. This IBC sucks. If you want to talk you can call me or email me. I will PM you. Hang in there. Love, Caryn
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DX 11/07 age 49, Stg 1, Gr 3, 1.1 cm, lump, 0/1 nodes, BRCA-,TC x 4, 37 rads, 2/08, 1/09,recur to axilla nodes 5/10 recur in mediastinal node,stage iv, 09/10 carbo/gem/parp, 2/11 NED, 3/11 stg iv IBC
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Debris
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Joined: Jun 07 2010 Location: Forsyth,Georgia Status: Offline Points: 756 |
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Posted: Oct 02 2011 at 7:35pm |
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Aargh. I had a lovely post all done, and and then lost it all.
I can't speak to the niceties of those distinctions, D. My original Dx was DCIS, no nodes involved, stage 0, ER+, PR+, HER2-. The "best cancer" to have if one is going to have BC, my surgeon said. Then the 2010 neck node biopsy showed TNBC - an apparent flipping. All I can say that Dr. C was quite certain that it is a seperate cancer. He pointed out a couple of phrases in the original 2008 path report, that tended that way, but which may have been overlooked. (Which could also account for the aforesaid flipping) Although Dr C recognized abnormalities in the left breast skin, they are by no means predominant or highly noticeable. The core biopsies of breast skin and neck confirmed the diagnosis. He feels the FEC is the best starting point, and said it would work against the TNBC too. His feeling is, though, that right now the IBC is the most urgent issue to be taken care of. He too, is worried about further impact on the airway. So far the meds they are giving me have not done anything for the swelling, so the consensus is that it is most likely not chemo allergic reaction. However, it could include some lymphedema along with the BC which, for face and neck, pose their own problems (can't wear a compression sleeve around neck, for e.g. It feels like I already have that!) I hope when the folks are back on Monday, this particular episode is resolved, as I feel fine for the rest of 'me'. I will keep posting anything new that crops up. Take care, all. Deborah. |
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4/12 Xeloda/Tykerb
2 Carboplatin 12/11 Dx IA 9 Gemzar/Taxotere Dx IBC:FEC 5 Ixempra/Sprycel 2 25 Rad 10/10 BRCA1-/2suv 9 NED 6 Stg4 Grd3 many nodes no Sx/Rad. Taxol/Avastin 06/08 Dx DCIS 0/SN Rads/AIs |
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TNinTN
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Joined: Apr 25 2011 Location: Knoxville, TN Status: Offline Points: 311 |
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Posted: Oct 02 2011 at 8:07pm |
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Just a quick word of encouragement. Susan and I went to Greek Fest last weekend and one of the ladies serving pastries recognized Susan from our many visits to the Cancer Support Community. She shared with us that she had recently been treated for IBC and she was doing quite well and felt good enough to contribute her considerable talents to the festivities. Prayers continue for all of you and hopefully you will be doing well and feeling great soon. Her homemade pastries were delicious, by the way. Susan even had a bite of Baklava - a rare departure from her no sugar regimen.
Martin
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Wife age 53@dx TN IDC Stage IIA 7/10; BRCA1&2 Neg; BROCA Neg; LN Neg; taxol+cisplatin+/-RAD001x12(clinical trial); lumpectomy 12/10;ACx4; 33 Rads complete 4/11; NED 5/5/11
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SagePatientAdvocates
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Joined: Apr 15 2009 Status: Offline Points: 4748 |
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Posted: Oct 03 2011 at 5:30am |
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Dear Deborah,
thank you for taking the time to keep us updated. I have been thinking about you/your DH and the ordeal you have been going through. I hope today will be a better day for you. you both are in my prayers, Steve
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I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates
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Debris
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Joined: Jun 07 2010 Location: Forsyth,Georgia Status: Offline Points: 756 |
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Posted: Oct 03 2011 at 7:44am |
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Thanks for your encouragement, Steve. It is so nice, to now 'know' you! Hope your other interventions of last week worked out for all concerned.
Take care. Deborah |
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4/12 Xeloda/Tykerb
2 Carboplatin 12/11 Dx IA 9 Gemzar/Taxotere Dx IBC:FEC 5 Ixempra/Sprycel 2 25 Rad 10/10 BRCA1-/2suv 9 NED 6 Stg4 Grd3 many nodes no Sx/Rad. Taxol/Avastin 06/08 Dx DCIS 0/SN Rads/AIs |
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Debris
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Joined: Jun 07 2010 Location: Forsyth,Georgia Status: Offline Points: 756 |
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Posted: Oct 03 2011 at 7:51am |
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Hello Martin. Thanks for that good story. Like TNBC, most of what one reads on I B C is scary, so it's good to hear the other side, too!
I'm currently on a 'nothing by mouth' routine until they can get the swallowing and breathing thing worked out. So I'm enjoying Susan's treats vicariously... |
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4/12 Xeloda/Tykerb
2 Carboplatin 12/11 Dx IA 9 Gemzar/Taxotere Dx IBC:FEC 5 Ixempra/Sprycel 2 25 Rad 10/10 BRCA1-/2suv 9 NED 6 Stg4 Grd3 many nodes no Sx/Rad. Taxol/Avastin 06/08 Dx DCIS 0/SN Rads/AIs |
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Debris
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Posted: Oct 04 2011 at 7:42am |
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Steve often says to find the beauty in every day. I've realized that this episode with the significant swelling and subsequent hospital stay and medical intervention has provided an unforeseen benefit! The extra fluids, steroids, benedryl, etc., etc., have no doubt helped contain any immediate side effects of my first FEC infusion!
I saw Dr C yesterday, and he said he can already "see" an improvement in my neck. His feeling is that the reaction was the "cancer fighting back because we hit it hard". Today, I believe I can also feel a difference, in that I can actually move my head up and down a little more. It had become so bad that basically I could only look at the floor in front of me. So, I'm encouraged by this. And I'm even more encouraged by the love, support and prayers of all of you. Thank you so much. 
Deborah Edited by Debris - Oct 04 2011 at 7:44am |
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4/12 Xeloda/Tykerb
2 Carboplatin 12/11 Dx IA 9 Gemzar/Taxotere Dx IBC:FEC 5 Ixempra/Sprycel 2 25 Rad 10/10 BRCA1-/2suv 9 NED 6 Stg4 Grd3 many nodes no Sx/Rad. Taxol/Avastin 06/08 Dx DCIS 0/SN Rads/AIs |
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LauraT
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Joined: May 05 2010 Location: Georgia Status: Offline Points: 739 |
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Posted: Oct 04 2011 at 7:51am |
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Deborah - Your spirit and faith encourage all of us! So glad to hear that Dr. C sees improvement and that your range of head motion is improved, even if just slightly. Will continue praying for you and for this treatment to work on both the IBC and TNBC. (and that the side effects from chemo will be non-existent!).
Much love, Laura
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DX 10/09 @44, Stage I IDC tnbc, DCIS other side, Neoadjuvant TCx4, Bilateral Mastectomy w/Recon 1/10, 1.2cm 0/7 Nodes, 5/11 Mets to Lungs/Lymph Nodes, Avastin/Taxol, 10/11 Bone Mets, Xgeva
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123Donna
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Joined: Aug 24 2009 Location: St. Louis, MO Status: Offline Points: 13510 |
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Posted: Oct 04 2011 at 8:05am |
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Deborah, So encouraged by the improvement! With all you're going through, you seem to find the beauty in each day and still offer support to all on these boards. You are such an inspiration  Donna
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DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15 |
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Debris
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Joined: Jun 07 2010 Location: Forsyth,Georgia Status: Offline Points: 756 |
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Posted: Jan 02 2012 at 2:57pm |
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Current update -
I am doing quite well with the chenmo now, now that my "slow" thyroid is being medicated, and I've stopped all the steroids (had to taper off slowly, and it wasn't fun!). But I've had this persistent "infection" showing on my lungs. No amount of antibiotics seemed to do anything to it. So, last week I wasn't given chemo - had a lung needle biopsy instead. The biopsy went well, and the suspected diagnosis was confirmed - Invasive Aspergillosis. I've been prescribed the appropriate medication (which itself has all manner of side effects). It is a difficult fungal infection to clear, and I'm told it could take 6 months to a year to do it. Chemo will resume once I'm on the medication - so hopefully I'll get chemo next week. (I'm sure it's my imagination working overtime, but I keep thinking the nodules on my neck are growing again...). Nevertheless, with stopping the steriods and with the thyroid medication, I'm feeling stronger and more "with it" than I've been for some months now. Wishing all a healthy, happy, new year, and for many years to come. Deborah. |
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4/12 Xeloda/Tykerb
2 Carboplatin 12/11 Dx IA 9 Gemzar/Taxotere Dx IBC:FEC 5 Ixempra/Sprycel 2 25 Rad 10/10 BRCA1-/2suv 9 NED 6 Stg4 Grd3 many nodes no Sx/Rad. Taxol/Avastin 06/08 Dx DCIS 0/SN Rads/AIs |
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Shelly Rae
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Posted: Jan 02 2012 at 5:45pm |
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Wishing you the best, with all you are giong through. You sound like you are hitting this cancer hard which is great! Keep up the fight. It is amazing what can handle in the fight to kill the cancer in our bodies. Keep up the good fight!
Shelly Rae
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4/09 age 47 Stage 3a, Gr 3,1 node micro ACx4 Tx4 Rads x 33, done Dec.1,2009 NED
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vickid
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Joined: Jan 24 2010 Location: Venice FL Status: Offline Points: 27 |
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Posted: Jan 07 2012 at 11:54am |
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Deb,
I'm probably a bit late to reply , but I was diagnosed with triple negative IBC in May of 2009-like a double whammy and none of my friends knew nothing about either.
I went through the mastectomy, 26 lymph nodes pulled ( 8 were bad) had A/C, taxol, radiation...all the "fun stuff" we experience. I had mets to the spine in Dec 2010 and have been on Xeloda since then, which is wonderful if one must be on chemo, as it's pill form and I take it at home. Mets were gone in 3 months. Some side effects but nothing like what the "Big Guns" do.
Triple Negative IBC is scary-big time scary. My sister knows a young woman who is a 6 year survivor of this combination, but cancer can't read and I know God has a plan for me..I wish I'd get a few hints there! Good doctors and common sense-and be kind to yourself. I have always told myself that, at times, I don't get what I deserve, I just get what I get..and it's ok....not great...but ok.
Vicki
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christina1961
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Posted: Jan 07 2012 at 12:29pm |
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Deb,
Sending you love and support! Christina
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2.5 cm TNBC, BRCA-, diag. 2/11, neoadj chemotherapy, uni MX, y2cm,2/16 nodes, RCBII, tumor retested 5-10%ER+,PR-,Her2-, rads, clin trial eribulin 10/11-2/12, tamox.
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SagePatientAdvocates
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Posted: Jan 07 2012 at 10:37pm |
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Dear Deborah,
my prayers, for you and your DH, continue unabated and always will... again, wishing you both a better New Year than last... I admire, both of you, more than words can say. warmly, Steve
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I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates
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zacar
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Joined: Jul 09 2010 Location: Sherman Oaks,CA Status: Offline Points: 299 |
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Posted: Jan 08 2012 at 1:33am |
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hi all,
i am on hospice right now after radiation poisoning. its amazing what that can do to you. i woke up so disabled. can't remember much but has been very lucid the last few days. the brain is so complicated. hope it stays this way for awhile. hi steve. hugs, Caryn
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DX 11/07 age 49, Stg 1, Gr 3, 1.1 cm, lump, 0/1 nodes, BRCA-,TC x 4, 37 rads, 2/08, 1/09,recur to axilla nodes 5/10 recur in mediastinal node,stage iv, 09/10 carbo/gem/parp, 2/11 NED, 3/11 stg iv IBC
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SagePatientAdvocates
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Posted: Jan 08 2012 at 8:25am |
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Just saw this, Caryn...very sorry you are going through this.
I will call you later today. It’s 5:23 am for you...will call you around 11 your time...I am in Pennsylvania at my daughter’s but will be back in L.A. on Tuesday evening. you have been, are and shall be in my prayers, Steve
Edited by steve - Jan 08 2012 at 8:27am |
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I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates
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