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IMMU-132 Clinical Trial (sacituzumab govitecan)
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mwgans View Drop Down
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Joined: Dec 06 2020
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    Posted: Dec 26 2020 at 5:06pm
Hi TNBC -- I am so grateful for having found this community.  I am a 57 year old white woman diagnosed out of the blue on 11/13/20 with TNBC.  I am otherwise a 100% healthy person.  I felt a lump in October 2020, and you know the story from there.....  I am Stage 2B with one lymph node involved.  My genetic testing has revealed 0 genes.  I am fortunate to live close enough to Dana Farber in Boston, MA where I have chosen to participate in an IMMU-132 clinical trial.  I am wondering if there are any others out there in this community who have been treated with sacituzumab govitecan?  If so, what were your side effects, your outcomes?  I have had extremely mild side effects after just 2 treatments so far.  My hair is starting to fall out -- actually thinning not all out yet.  If you were on this treatment, did your hair thin first and then all fall out?  I am trying to decide if I should just cut and/or shave it all off now, as I am assuming that even if it is just thinning now, as I continue to get treatments, it will likely fall out altogether?  I have very long, thick hair.  Just don't know if I should wait it out and see what happens or go for it and cut/shave it.

Any and all advice and insight will be so very greatly appreciated.

MWG


Edited by mwgans - Dec 26 2020 at 5:11pm
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cookie54 View Drop Down
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Points: 13 		Post Options Post Options   Thanks (0) Thanks(0)   Quote cookie54 Quote  Post ReplyReply Direct Link To This Post Posted: Dec 27 2020 at 5:47pm
Hi, I'm sorry that you find yourself here but glad you found this site that will help you along your journey. So I did not receive the same chemo that you are but figured I would weigh in on the hair loss. My first bout I was on A/C and that is a guaranteed hair loss 2-3 weeks later. So mine started coming out in large clumps so at that point I knew it was a matter of time and just shaved it off. This time I was on Gem/Carbo with Keytruda and they said "hair thinning" most likely. So this year I kinda waited to see what would happen. I was spared this time around and only have thinning.

So I feel like it's up to you and what does the drug cause, hair loss or just thinning? Everyone definitely feels differently about losing their hair. I always told myself that my life was more important than my hair. But I was definitely bummed about it!
I wish you all the best on your clinical trialHug
8/2016,IDC,Stage IA, Grade 3,0/1 nodes ER-/PR-,HER2-
9/2016 BMX;Recon Saline implants
6/20,StageIIIC,Grade3 ER-/PR-HER2-
6/20 Carbo/Gem/pembro
10/20 ALND 5/8 nodes
Rad11/20-12/20
Xeloda 2/21
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mwgans View Drop Down
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Points: 3 		Post Options Post Options   Thanks (0) Thanks(0)   Quote mwgans Quote  Post ReplyReply Direct Link To This Post Posted: Dec 27 2020 at 5:52pm
Thank you so much Cookie54!  A nurse at Dana Farber told me she knows of one patient in my clinical trial who had thinning and not full on hair loss. I kind of wish she hadn't said anything :(
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Chessie View Drop Down
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Points: 4 		Post Options Post Options   Thanks (0) Thanks(0)   Quote Chessie Quote  Post ReplyReply Direct Link To This Post Posted: Dec 27 2020 at 5:59pm
Hi MWG,

I'm also new to the Group and glad to have made the connection.

I am seeing oncologist at Dana Farber on Thursday to discuss chemo plan. I got the pathology report on Christmas Eve--right side  pT1aN1a.   Was considering radiation as well, but not sure since 1 node is involved it could be more extensive .  I had mantle field radiation in 2000 for Hodgkins Lymphoma; but not chemo.

Are you doing chemo and the IMMU-132 protocol or only the IMMU-132?  How did you decide to do the trial? Are you comfortable sharing your treatment plan?

Hair loss ...€@#^*#^#*_~. My hair is down to my butt.  Resigned to losing it all. Going to donate to Locks of Love. Did anyone talk to you about the Paxman Cooling Cap.  That has a decent change to reduce hair loss for certain chemos.

Regards,
Ann
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