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IMMU-132 Clinical Trial (sacituzumab govitecan)

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mwgans View Drop Down
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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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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,StageIA, Gr3,0/1 nodes ER-/PR-,HER2-
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mwgans View Drop Down
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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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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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Post Options Post Options   Thanks (0) Thanks(0)   Quote mwgans Quote  Post ReplyReply Direct Link To This Post Posted: Aug 16 2021 at 10:47am
Hi Ann - I am so so sorry I am just now seeing your message :(.  My info may be too late now, but here it is.  I went through the clinical trial (sacituzumab govitecan) at Dana Farber with Dr. Winer who was/is awesome.  Dr. Winer really helped me process whether or not I should do the clinical trial - he would not outright advise me to do it because it is research after all, but he was extremely informative, answered all my questions, and quite frankly, I felt like the mere fact that he had presented with the clinical trial as an option was enough to convince me to do it.  I completed the clinical trial in late February, and had surgery on March 17 - a lumpectomy and lymph node excision - I had a PCR which was amazing, but because I had been treated with a research drug, Dr. Winer recommended that I undergo another regimen of standard of care chemo for tnbc which I did and completed on June 17th.  I then went through 4.5 weeks of hypofractionated deep breath inhalation radiation therapy, which I just completed on 8/4.  Lost all my hair along the way - it is now just starting to grow back in - I was so worried about it at the outset, but now realize what a small price it is to pay for still being alive.  I am now in the limbo state of being down with treatment and thinking, now what?  I am very worried about a recurrence since tnbc is that kind of a bugger.  I will see Dr. Winer again in October for my follow up visit, and will see my surgeon, Dr. King, in November at which time I will have my first post-treatment mammogram.  Just keeping my fingers crossed until then.  I do hope you are hanging in there.
Take care,
Mary
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