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Metastatic - Need guidance with treatment

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TwoMiracles View Drop Down
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    Posted: Aug 02 2020 at 9:59am
Hello,
I have just found this group which has been so helpful with the level of information I got on TNBC.
I was diagnosed in 2016 with Stage 1 TNBC in right breast. I have tested positive for BRCA1 gene. in 2016 I went through 6 months of chemo ( ACT + Taxol) then had a bilateral mastectomy plus reconstruction. I had no radiotherapy since sentinel lymph node came out clear. I felt very positive that this is now all behind me. I am now in strong health, though I had discomforts ( pinches and small burns ) in the right breast the last few months. I have reported these to both my surgeon and oncologist who both stated this was due to nerve tissue regeneration and nothing to worry about. To be on the safe side, they sent me twice for ultrasounds which came negative. Unfortunately , last month, I noticed a swollen lymph node in my supraclavicular area. The oncologist had it biopsied plus PET scan and confirmed that it is the same TNBC that has come back and that I am now stage 4. The PET scan revealed metastasis in the supraclavicular region and internal mammary lymph node. I was completely devastated to say the least. Trying to be positive that I will pull through this but some days are better than others.
The oncologist recommended that I start right away on Erubilin ( Halaven). My PD-1 test is still not approved by my insurance so she wants to start with this to gain time while we sort the insurance issue out. Based on the test result, she wants to put me on PARP inhibitor plus immunotherapy.
My level of info on treatment at this stage is quite limited. I want to go for second opipion but I leave outside of US/Canada in the middle east and my oncologist is considered the best in town. I still feel that I need to get several opinions. I asked her regarding radiotherapy to the breast area/lymph node and possibility to remove the node, she said this is not a safe option. I should just go on with systemic chemo until it stops working then I move on to another medecine. Any thoughts? I do have possibility to get treated in US or Canada if there is a good recommendation on how to handle this.
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: Aug 02 2020 at 11:28am
Dear Two Miracles,

I am a patient advocate who has helped many on this forum who have/had TNBC. Many 
also have the BRCA mutation. Please send me a PM and if I don't answer quickly please feel free to email me at steve@sagepatientadvocates.org

Coincidentally, I have been helping, for the last 7 years, a BRCA+/TNBC woman who worked in Dubai for several years and is currently in Dubai visiting friends. She is in her 40's and is very knowledgeable about the resources available in Dubai. Pre-Covid I was able to get her a consult at MD Anderson Cancer Center in Houston.

She, like I, is not a medical professional and I am not sure that she is open for a meeting but I can try. I just wrote her and I am guessing she is out to dinner.

If you have WhatsApp, FaceTime we can do a call today and then I can explain how I might be able to help you. There are no charges. And everything we talk about will remain confidential.

I would suggest you try to get a second opinion and I may be able to help you, although
Covid may make it all very challenging. There, also, may be the possibility for a video consult with someone in the States. Let's try to talk, please, if you wish. 

with my love to all here,
Steve




Edited by SagePatientAdvocates - Aug 02 2020 at 11:29am
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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Post Options Post Options   Thanks (0) Thanks(0)   Quote SagePatientAdvocates Quote  Post ReplyReply Direct Link To This Post Posted: Aug 02 2020 at 12:01pm
Dear Two Miracles,

I just heard back from the lady who is currently in Dubai.

"Hi Steve I would be happy to help and talk to her, of course."

So now I can mention that this woman is one of my heroes and she has been through
a lot these last seven years and has always managed her arduous journey with grace, intelligence, courage and a positive attitude. She is one of my favorite people.

with my love to all here,

Steve

p.s. if you write me I will send you my phone number and we can, hopefully, get started.



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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TwoMiracles View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote TwoMiracles Quote  Post ReplyReply Direct Link To This Post Posted: Aug 03 2020 at 6:47am
Hello Steve
Thanks a lot. Have sent you a separate email.
Looking forward to the call to discuss this further.
Regards
2Miracles

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