I have IBC
Hello everyone,
Happy to finally get treatment started soon... am waiting to hear back whether or not I am approved for the Kristine study. In the mean time, waiting is HARD, but I am staying positive and trying to work out and eat healthy.
I am 34 today (happy birthday me!). I have a daughter who is 19 months old and a husband. I discovered an odd texture and lumpiness to my breast and went in to emergency Dec. 23. A month later I had a mammogram, then ultrasound. A week later a biopsy, a week later results of stage 1 cancer, then referred, surgery scheduled, then surgery unscheduled because surgeon missed the fact that lymph node biopsy was inconclusive. Then another biopsy. Then a week later results that cancer was in lymph nodes, so stage 2. Then referred to oncologist who diagnosed me as IBC stage 3.
I told myself I wouldn't look at stats, but have. Had a few break downs, but staying positive. I have a daughter, a husband, I'm young and will try my darndest to do everything I can to get through this.
If any of you have great links to previous topics of recommendations for anything related to this cancer or the treatment of it, please let me know. I will either be getting Kadcyla and Perjeta only, nothing else OR two targeted drugs (Herceptin and Perjeta) and a mixture of chemo drugs (docetaxel, carboplatin). Anyone else on this study? What arm did you get, and how is it going?
Susan
Comments
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Oh, Sue, what a shock, huh. I also have IBC and it definitely gets your attention. Do not read about the stats since that won't help you psychologically and also they don't necessarily have anything to do with you. As my surgeon and MO say to me, the idea is to turn IBC into a chronic disease that can be treated over the rest of my life. Mine certainly has been successfully treated with chemo twice. I am NED (no evidence of disease) and have been so for a year, and this has been a good year. I'm triple negative, so I have fewer drug options but so far I've only needed one. When I have a recurrence (very likely since I'm stage IV) I can still use the same drug and I'd expect good results within a few months.
I was on a trial to begin with (Abraxane and Avastin) but had to drop out due to problems with the Avastin (go figure since that is a pretty benign drug). But the Abraxane worked like a champ. Here's to hope that you will also be a good responder to your trial drugs.
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Sue,
Sorry for your diagnosis. There is a site strictly for those with IBC "ibcsupport.org". It's not as active as this one, however. I'm just about 6 years out with stage IV IBC with bone mets. I was stable for 4 years & move on to new treatments when something pops up, but doing well. Ask about local support at your medical oncology place. Patientresource.net has magazines with pages of support numbers & financial aid for those going through cancer.
Come back here with any questions as there a quite a few of us with IBC. You can PM anytime. I'd be happy to talk with you.
I hope you do very well with treatment.
Hugs,
Terri
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So sorry you have got your diagnosis. I remember it well when I heard my IBC dx in Nov 2013. I feel this is a club that we never applied to, but nonetheless are now fully subscribed members. There are lots of us that have been through the treatment and come out the other end. I feel so much better now, back to my normal self. Even though I have now been dx with DCIS in my other breast, I feel so much more able to cope with this and not get so scared and upset. I'm just bringing forward my reconstruction and having a right UMX at the same time. I feel that IBC is only a special form of IDC and just behaves a bit differently. I had neo-adjuvent chemo and my swelling and other symptoms subsided very quickly and a lump formed. I didn't achieve a perfect response - but it was good enough for me as I had only a little left at surgery. I can't advise regarding Her2+ treatment, as I was Triple negative. I do know that having chemo didn't feel like being hit by a train like I feared. We all react differently, but there are lots of things that can be done for side effects, both medically and complimentary. My nurse coordinator gave me very good advise - take each stage at a time and don't drive stressed. I would also advise to accept all the help you can, and be prepared to suggest how people can help - meals, lifts, childcare etc. I tried to remember how nice it is to help others. My lovely neighbor would cook my family a meal eery now and then and it was lovely to know how much she cared. I also had a few friends and my sister stay from the UK (Im an expat in California) for a week each to help h=keep my family on track.
Best wishes and Happy Birthday Susan
Sarah xo
(Edited for typos)
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Thank you Sarah, Bonnie and Terri for responding here. I am very happy to meet all of you positive lovely people. I am so happy for the support on here... it means a lot. Now is the weekend, so as I notice my rash seems to be spreading to in between my breasts I am unable to contact my oncologist or anyone, and happy I can at least turn here to vent while I'm scared. Will keep everyone updated.
Susan
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Hi Sue -- I am sorry that you have become a member of this ever growing club. Getting a dx of IBC is frightening. Please do not look at the stats because they do not apply to you -- you will not become a statistic. Unfortunately IBC has been little understood, but now I find that it is getting more attention. And it should since it just suddenly appears and grows very fast. I was diagnosed with IBC in January 2005 and am now 10 years out with NED. I was fortunate in that it had not spread to any of my lymph nodes. I also consider myself fortunate in that I am HER+ and was able to take Herceptin and my chemo cocktail was taxol and carbo.
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Hi Simimom. That' awesome for you, LOVE hearing from other survivors.
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Sue, you mentioned you had a biopsy a week after your ultrasound and mammogram...were there any abnormalities on those tests? -
SadVto hear of your news i have the same thing but hanging in there. I was encouraged tonight as I finally watched a program on HBO called VICE: Cancer where there is a study that should be FDA approved by 2016 it uses viruses to kill the cancer its very promising they also have four studies that the cancer went into remission in weeks no chemo involved you just go into the hospital and get the transfusion with most people and you are out. This is in my prayers tonight if this is approvedapproved
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my biopsies showed I had cancer in lymph nodes, and a lump in breast that was also cancer. Stage 3, the fastest spreading (3), hormone negative and HER2 positive. I am on a study called Kristine. I got lucky and got the arm of the study that has two meds, but not standard chemo. My hair has not fallen out and I am doing pretty well. Have only been sick enough to be in bed 2 days out of 2 weeks so far.
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