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Hi, I am a new member

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Jmichal View Drop Down
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Joined: Feb 18 2018
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    Posted: Feb 18 2018 at 3:14pm
Hello! I was diagnosed with TNBC at the beginning of September 2017. My tumor was described as T1 N1 M0 ( hadn't metastasized anywhere else. It was described as being mammary not ductal) Stage 2B and I was advised to start neoadjuvent chemotherapy, followed by possible lumpectomy and radiation.
I was a candidate for a  double blind study of the immunotherapy drug pembrolizumab ( Keytruda), which I enrolled in because I figured it might help me and it might help the science around TNBC
Last fall I  had12 weeks of a weekly infusion of Carboplatin and Pacitaxol plus study drug , followed this year by another 12 weeks of chemotherapy every three weeks with Doxirubicin and Cyclophosphamide plus the study drug.  March 2 will be my last round of this chemo. (sorry i don't knowa ll the shorthand for the chemo drugsWink)
Side effects were pretty manageable; mostly fatigue, some stomach discomfort, and of course the hair loss.. with more extreme fatigue when I started the every three week regimen which knocks me back for about a week out of the three. My Oncologist advised me that it looks like I am getting the actual study drug because it did have a significant effect on my thyroid, which is a documented side effect with Keytruda and I am now taking thyroid replacement medication, but hey, lots of women deal with that and i think its worth it if it keeps my cancer from reoccurring, which is one of the main things they are looking at with this study.
I am thrilled to report that I can no longer feel what was a very obvious lump on the side of my breast and the  swollen lymph node that I could also feel is barely noticeable. And I have one more round to go through. The Dr. checking in with me about the study has said there was one other patient who had 100% response to the chemo using this protocol and at the very least, I think the lumpectomy will not be terribly involved. I will follow up with the radiation for 4-6 weeks and then continue every 3 weeks for 6 months with an infusion of the study drug only!
I feel hopeful and grateful that I will beat this. Yes, it has been  physically,emotionally and financially difficult , and I am basically losing a year of my life. At 62, I want to make every year count. I hope that being involved in this study will provide information for others in similar circumstances going forward. I would just urge anyone newly diagnosed to trust their Dr.s and not be afraid to undergo treatment. But I also know sometimes, it's just a matter of luck. I hope everyone gets the care and support that they need.
I am an artist, and hope to get back into my studio soon. Obviously this has had a profound effect on my life, my family and my art. Who knows what I will eventually create.
JMichal
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mainsailset View Drop Down
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Post Options Post Options   Thanks (1) Thanks(1)   Quote mainsailset Quote  Post ReplyReply Direct Link To This Post Posted: Feb 18 2018 at 10:05pm
Thank you so much for sharing your story! I too was on a clinical trial and I was 57 at time of dx. I think it's such a great feeling to know that your own journey is one that can help other women behind us by revealing what responses are to a trial drug.

The financial aspect of going through treatment is definitely a hardship. I remember the feeling of just wanting to get back to my work, pay my bills and enjoy the 2nd chance at life I'd been given. It's a feeling of such relief to make it through the other side of treatments.

Oh, I should comment that when you have radiation, do ask the technicians to put a shield up over your thyroid. It only takes about 30 seconds to put into place and even though they can pinpoint the areas of treatment, it's just a simple thing to protect your thyroid from any misstep after it's already been challenged by your treatment.

Best of luck going forward!
Mainy
dx 7/08 TN 14x6.5x5.5 cm tumor

3 Lymph nodes involved, Taxol/Sunitab+AC, 5/09 dbl masectomy, path 2mm tumor removed, lymphs all clear, RAD 32 finished 9/11/09. 9/28 CT clear 10/18/10 CT clear
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123Donna View Drop Down
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Post Options Post Options   Thanks (1) Thanks(1)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Feb 19 2018 at 7:35am
Hi JMichal,

Thank you for sharing your story.  I'm glad you got into the immunotherapy study and hopefully getting the study drug.  I hope you see great results.  The financial aspect of treatment is pretty hard, especially if you are unable to work or miss work do to treatment. 

Donna


DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15

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Kellyless View Drop Down
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Post Options Post Options   Thanks (1) Thanks(1)   Quote Kellyless Quote  Post ReplyReply Direct Link To This Post Posted: Feb 19 2018 at 10:35pm
Welcome! I have a friend here in the same study, she too has had side effects that has made it obvious she's getting the drug. No major problems tho. Thank you for participating! And do let us know how it's going when you have surgery. Your attitude is great, that will serve you well as you get all this behind You :)
Kelly
IDC, 2.2 cm, Stage IIb,lumpectomy 1/30/09 ACx4,Tx4 36 rads
6/1/17 Local recurrence same breast, same spot 1.8cm Carb.4x every 3 wks, Taxol 12x once wk. Dbl Mast. PCR!! Reconstruction fail, NED!
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Jmichal View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Jmichal Quote  Post ReplyReply Direct Link To This Post Posted: Feb 20 2018 at 1:52pm
Thanks for these responses and for the tip about shielding my thyroid during radiation. I will definitely do that.  I will post after my surgery too, and let you all know what the results were. It's great to hear voices from you all who have been through this. Can't wait until my eyebrows grow back.Wink
JMichal
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