Author |
Topic Search Topic Options
|
mwgans
Newbie
Joined: Dec 06 2020
Location: Cape Cod
Status: Offline
Points: 10
|
Post Options
Thanks(0)
Quote Reply
Topic: IMMU-132 Clinical Trial (sacituzumab govitecan) 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
|
|
Chessie
Newbie
Joined: Dec 27 2020
Location: Boston MA
Status: Offline
Points: 4
|
Post Options
Thanks(0)
Quote Reply
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
|
|
mwgans
Newbie
Joined: Dec 06 2020
Location: Cape Cod
Status: Offline
Points: 10
|
Post Options
Thanks(0)
Quote Reply
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 :(
|
|
cookie54
Groupie
Joined: Oct 24 2020
Location: New Jersey
Status: Offline
Points: 78
|
Post Options
Thanks(0)
Quote Reply
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 trial
|
8/16,IDC,StageIA,Gr3,0/1 nodes ER-PR-HER2- 9/16 BMX,AC 6/20,StageIIIC,Gr3,ER-/PR-HER2- 6/20 Carbo/Gem/pembro 10/20 ALND 5/8 nodes,Rad x25 11/20 thyroid ca Xeloda2/21 Stage IV 6/22 lung mets
|
|
mwgans
Newbie
Joined: Dec 06 2020
Location: Cape Cod
Status: Offline
Points: 10
|
Post Options
Thanks(0)
Quote Reply
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
|
|