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Newly Diagnosed Support

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cgiver View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote cgiver Quote  Post ReplyReply Direct Link To This Post Posted: Mar 09 2021 at 11:44pm
Hi all,
Iíve been reading for a few weeks and finally making my first post. My 43yo wife was diagnosed end of January with TNBC 1.4cm right breast no clinical node involvement. Itís Grade 3, no LVI. Her last MRI says 2.1 cm so I guess we are somewhere between Stage 1 and 2. Thankfully I found this board early on and was able to connect with Steve (SagePatientAdvisors). This man is a saint and has helped tremendously. I canít thank him enough.

With his help we have been to MD Anderson in Houston and enrolled in the Artemis trial which will provide bio marker and molecular testing on the tumor while my wife starts ďstandard of careĒ AC chemo. They monitor the success and if itís not as hoped they use the testing results to try to either adjust the 2nd phase chemo plan and/or direct to a clinical trial.

We have also been to Siteman in St. Louis with another great oncologist that specializes in TNBC and will provide the standard of care chemo locally.

Hopefully we get the response we hope for through AC/T, if not we are encouraged that there are more options to add pre and post surgery to help. I feel like we are in good hands at both of these top cancer centers with fantastic DOCs recommended by Steve.

Chemo starts a week from today. We were also offered other trials that used T+Carboplatin and immunotherapies up front instead of AC but are opting for AC first to maintain synergy between Artemis and Siteman, then consider adding other therapies after AC depending on how things look.

Itís been a scary few weeks with lots of anxiety, itís getting a little better now but I imagine thereís always the next worry through every stage. I feel bad my wife has to lose her hair and deal with all this right as summer is rolling around again. But we are starting to accept and trying to stay hopeful that nodes do not become involved, chemo does a good job and we come to a clear decision on the best type of surgery. She has no known breast cancer mutations but has one variant of unknown signifigance in BRCA2.

Best of luck to all here, thanks for all the info thatís been so helpful in my research. 


Edited by cgiver - Mar 09 2021 at 11:46pm
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123Donna View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Mar 10 2021 at 8:11am
Cgiver,

Hello and welcome to the club no one wants to join.  I'm so glad Steve was able to help you and your wife.  He's truly an angel to our community and has helped so many of us. I'm from St. Louis too and you are definitely in good hands at Siteman.  The Artemis trial seems very impressive with molecular testing.  Wishing you both good results as she begins 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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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: Mar 10 2021 at 8:14pm
Hi, Sorry that you and your wife are in the TNBC club ,none of us want to be here. Glad you found this site as it it filled with wonderful support and information!

 I know it is definitely a scary time in your lives but it sounds as if you have a great plan in place. I agree that the hair loss is a bummer and challenging in the summer. It was definitely a tough loss for me too. I just always reminded myself that my life was more important than my hair and I accepted it as time went on.

Best wishes on great response to her plan!


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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SPH0611 View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote SPH0611 Quote  Post ReplyReply Direct Link To This Post Posted: Mar 11 2021 at 2:27pm
Hi! 
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SPH0611 View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote SPH0611 Quote  Post ReplyReply Direct Link To This Post Posted: Mar 11 2021 at 2:32pm
Hi! Letís try this again. Newly diagnosed with Tnbc 2/4. Had double mastectomy on 3/4. Went for post op today and found cancer was in one sentinel node. I am terrified! I know chemo and radiation are in my future and Iím okay with that but itís the bone scan and CT scan coming up that has me overwhelmed. Iíve been keeping a positive outlook but this has knocked me down. Any words of advice? Iím reeling. I live in the DC area and I believe have access to excellent doctors but is there an expert for this cancer? Thank you!
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SagePatientAdvocates View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote SagePatientAdvocates Quote  Post ReplyReply Direct Link To This Post Posted: Mar 11 2021 at 2:50pm
Dear SPN,

Sorry for your Sentinel Node results. 

I responded to you previously and would still welcome contact from you. The best plan for me would be a Zoom call. Unfortunately, I am doing some surveillance tests tomorrow a.m. but I could speak with you, if you would like, in about two hours or tomorrow night, or over the weekend. 

Please send me a PM if you are interested. There are two breast medical oncologists who are TNBC knowledgeable and whose contact info I can give you but I would need to speak to you first.

Alternatively, please send me an email at info@sagepatientadvocates.org 

Please try to take a deep breath and re-group. TNBC can respond very well to treatment and hopefully that will be the case with you.

warmly,

Steve
I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates
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gigi21 View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote gigi21 Quote  Post ReplyReply Direct Link To This Post Posted: Mar 13 2021 at 8:48pm
Hi.  I'm newly diagnosed, 3/8/21.  I'm blessed that my doctors are moving very fast to get scans and results back.  My next appt is on Tuesday, which should get me results from the PET and MRI.  I'm scared, what if them moving so fast is actually a bad thing.  The doctor is treating me as triple negative because the ER percentage was slow low and other two, of course, were negative.  I don't have history of breast cancer in my family.  

I noticed on another post about Vit D... My Vit D level was 12.
I've been on 50k units of Vit D for a week now and can't believe the difference.

I'm trying to stay positive and not think too much.... but it catches you of guard at the worst times.  The worst thoughts I have are...of course what ifs... but how in the world do we pay for this?  Do we have the right doctor?  Do I get a second opinion once I have the scan results?  Which way to go?  What are clinicals and what can they do for me?

Any direction on these questions would be great.  I know once I get a treatment plan that I will have more, but I have to start somewhere.  

Thank you
GiGi
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