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Can't catch a break!!

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Sheliahm View Drop Down
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    Posted: Jun 18 2017 at 4:22pm


So I'm so confused, scared and ready to throw on the towel. Just a brief history. I'm brca+ and dx with tnbc. Completed first line of treatments ac+t and bilat mastectomy. Before I can start rads i had a recurrence to the chest wall and superclavicar nodes. Nodules showed up all over the infected breast. We moved forward with rads but also chemo(cisplatin) at the same time. Finally finished both but had a bad skin reaction and low counts so I stopped chemo a little earlier than suppose to. Few things I noticed. After my first rads appt small nodules showed up outside the irradiated field. Doc said we'll keep an eye on them. Didn't want to radiate just incase it keeps happening. Now the ones on my breast are gone as far as we can tell and my nodes in my neck decreased in size. Now I'm seeing activity in my other breast right near the mastectomy site. And again "we'll keep an eye on it" I can't do any chemo because my skin isn't healed yet. So now I'm thinking did the cisplatin even work? I'm trying to stay positive but this doesn't look good. Any advice.. I'll take anything



Edited by Sheliahm - Jun 18 2017 at 4:23pm
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SusaninVA View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote SusaninVA Quote  Post ReplyReply Direct Link To This Post Posted: Jun 19 2017 at 4:48pm
Hi Sheliahm, I don't know if I have any great advice to give you, but I want to tell you, don't throw in the towel !!!!  You may want to get some more opinions from more than one doctor.  Do you live near any university hospitals?  If you are able to travel, I know Dr. Lisa Carey is an expert at Univ of North Carolina.  In the midwest, MD Anderson in Texas is a good choice.  I think Donna has a list of hospitals which meet a certain accreditation and she may be along to provide that.  Also, Steve is a patient advocate for TNBC patients and you could contact him.  He is a voice on this forum and you can private message him.  He has many contacts in the medical field.  Please don't give up.  I know you are frustrated beyond measure, and it sounds like you need more detailed info on what is happening.  Since this is Triple Negative, I do encourage you to get some more opinions.  Please let us know what you decide.  Sending you my very best!
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SusaninVA View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote SusaninVA Quote  Post ReplyReply Direct Link To This Post Posted: Jun 19 2017 at 4:57pm
Sheliah, I just wanted to add that Steve is listed on this forum as SagePatientAdvocates and you can private message him by clicking on the memberlist (up beside the login/logout prompt).  Once you are in the memberlist, look up "SagePatientAdvocates" and you will see Steve's info.  You will see a link to click on in order to send him a private message.  He is very friendly, and will be more than glad to recommend doctors/medical centers for you.  If I were in your shoes, I would contact him!  
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Meadow View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Meadow Quote  Post ReplyReply Direct Link To This Post Posted: Jun 20 2017 at 1:44am
Is there any possibility of trying a PARP inhibitor? This type of medication works especially well for people who are BRCA+. There's lots of research going on with PARP inhibitors. Steve could tell you more and would probably know where they have clinical trials. Don't give up!
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