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Mom newly diagnosed with Stage IV

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Mimidaughter View Drop Down
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    Posted: Apr 11 2017 at 4:11pm
Hello everyone. I am a daughter searching for information to help my mom.   I am reaching out for some support and information.  I have been looking on this board for about 2 weeks and we now have an official diagnosis of Metastatic Breast Cancer Stage IV - In her skin.   I know this is somewhat rare.  Her PET scan and brain MRI both show no lesions or hot spots anywhere.  
She was diagnosed in February of 2015 with TNBC and had a double mastectomy with flap method reconstruction.   All lymph nodes were negative at that time.  She did chemotherapy and then radiation.  
Her blood work showed her tumor markers increased and she had a pleural effusion -- along with a thickening patch of skin on the side of the breast that her tumor was on.  Biopsy of the lung and skin showed breast cancer cells.  

We live in a very rural area.  I have to be honest when I say I don't have a lot of faith in our outdated machines .... or much.  

We are heading to Seidman Cancer Center tomorrow to look at treatment options.  

Anyone have skin mets and what was the best treatment that worked for you??   

Thanks in advance.  

Alise
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thginknodnarb View Drop Down
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Post Options Post Options   Thanks (1) Thanks(1)   Quote thginknodnarb Quote  Post ReplyReply Direct Link To This Post Posted: Apr 11 2017 at 10:01pm
My wife Stage 4 TNBC with only Skin & Chest Wall Mets. Started out Stage 3 in April 2015. Did ACT > Double Mastectomy > Radiation. Given all clear in January 2016. Mets showed up April 2016. They tried a radical surgery and took her right chest wall all the way down to her rib cage. Unfortunately it came back before she healed from the 2 surgeries. Went on Xeloda....it did absolutely nothing. Started on Carbo/Gemzar in Fall 2016 and it cleared everything up by December. Took a break and it started coming back by the end of January 2017. Went back on Gemzar, but had progression while in treatment. We are now on Halaven and waiting to see if it responds. If not I believe her oncologist will move to trials.

Hope that helps.


Edited by thginknodnarb - Apr 11 2017 at 10:03pm
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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: Apr 11 2017 at 10:29pm
I'm so sorry your mother received this diagnosis.  I hope you can get some good information on treatment options.  I'm not posing this question to alarm you, but over the years I've seen some women misdiagnosed with TNBC skin mets, but later confirmed with inflammatory breast cancer.  It might be a good question to ask to rule this out.  IBC is very difficult to diagnose, but there are a few experts around the country, like Dr. Massimo Cristofanilli at Fox Chase Cancer Center.  Is that center close to your mom?  Steve, who is a patient advocate with SagePatientAdvocates, wrote some good information on the subject in another thread.  I'll post the links and perhaps you will want to read through them.  Please let us know what you find out from your visit to Seidman.






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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Mimidaughter View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Mimidaughter Quote  Post ReplyReply Direct Link To This Post Posted: Apr 13 2017 at 7:39am
Thank you for the information.  We didn't get any new news but feel better that we have a treatment plan and possible clinical trial.  The Dr. we met with was great and did spend over 2 hours with us.  With many of you I read that the clinical trial is kind of a last plan but the Dr. said timing has to work out and a trial would be the chemo that she would get anyway with an added agent.  

I feel the pressure to make this choice and am so lost - along with feeling like I am going to puke every day since the diagnosis. 

The talk of treatment is so over my head.  


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SusaninVA View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote SusaninVA Quote  Post ReplyReply Direct Link To This Post Posted: Apr 13 2017 at 9:26pm
Mimidaughter and Thginknodnarb, Reading your posts reminded me of a TNBC patient who had metastasis to the skin and was written up in an article. She had been treated at the City of Hope in California and had some remarkable results. The article can be found at
www.news-medical.net/news/20161221/Breast-cancer-patient-finds-new-hope-with-potentially-revolutionary-new-treatment.aspx
Even if you can't make it to the City of Hope, you could show this to the oncologist. My best goes out to both of you and your loved ones.
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Manchubby View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Manchubby Quote  Post ReplyReply Direct Link To This Post Posted: Apr 14 2017 at 10:51am
Dear Mimidaughter,

It would help if you are able to share what chemotherapy drugs your mum has previously tried and/or what is the chemotherapy drug in the clinical trial. That way people can recommend some other chemotherapy options for you to discuss with your oncologist. Aside from this radiotherapy helps control localised skin mets. Another option not frequently explored is electrochemotherapy. Some things to ask your oncologist about.

Theginknodnarb - I wish your wife the best results on Halaven. Feel free to get in touch with me if you want to have a chat about anything.

All the best,

Manc-hubby


Edited by Manchubby - Apr 14 2017 at 10:52am
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Mimidaughter View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Mimidaughter Quote  Post ReplyReply Direct Link To This Post Posted: Apr 14 2017 at 1:32pm
Wow -- that is a great article about the vaccine.  

My mom did AC/T when she was initially diagnosed.  

Right now it seems the Dr. is going to review her skin biopsy and make sure it is in fact TNBC (which she feels it is) and we could go with the traditional Carbo/Gemzar or we may be eligible for Phase II trial that provides chemo cisplatin or carboplatin with VX-970 which from what I understand is a ATR inhibitor.  

Does that make sense?  So much information.  

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Manchubby View Drop Down
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Post Options Post Options   Thanks (1) Thanks(1)   Quote Manchubby Quote  Post ReplyReply Direct Link To This Post Posted: Apr 14 2017 at 3:57pm
From my experience of TNBC as a carer, I'm not an oncologist, the treatment plan proposed by your doctor looks very reasonable. My wife also had a partial response with EC chemotherapy. EC is similar to AC chemotherapy. And her best response also to various mets was with Gem/Carbo and we felt in particular to carboplatin than gemzar.

So hopefully this treatment will work very well for your mum. All the best, take care.

Manc-hubby
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Mimidaughter View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Mimidaughter Quote  Post ReplyReply Direct Link To This Post Posted: May 15 2017 at 3:19pm
My mom has started her clinical trial.  The skin on her breast has started to seep but she has been able to keep the pain at bay for now.  We have increased her zoloft and she goes back for her Cisplatin/ATR inhibitor (mystery drug) next week -- so this is a good week. We have been living a new life that is certain.  Day by day...

I come visit - and read and read.  A lot of information.

Also her test came back that she is negative for EVERYTHING!!!  BRCA & AR and just everything.  

Thank you for listening.

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Mimidaughter View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Mimidaughter Quote  Post ReplyReply Direct Link To This Post Posted: May 15 2017 at 3:26pm
April 2016 was your diagnosis.  How are things now?  Did you have an success??

I hope - for all of you.  
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Post Options Post Options   Thanks (1) Thanks(1)   Quote gordon15 Quote  Post ReplyReply Direct Link To This Post Posted: May 15 2017 at 3:26pm
Thanks for the update! We are thinking of your Mom and you, my wife's BRCA and AR were negative also. Sometimes, there is no explanation for why this cancer happens, our thoughts are with you.


Edited by gordon15 - May 15 2017 at 3:27pm
wife: IDC/Lobular Stage2B 2008 lumpectomy/TAC+rads
TNBC Stage 3A/w/metaplastic/squamous Nov2015 Carboplatin-Gemzar chemo/masectomy Taxolchemo+rads 4-16
PET scan stable 9-2016/ 1-2017
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Post Options Post Options   Thanks (1) Thanks(1)   Quote Manchubby Quote  Post ReplyReply Direct Link To This Post Posted: May 17 2017 at 10:33am
Dear Mimidaughter,

I hope you have good support from your oncologist and breast care nurses as well. If the skin on her breast has started to seep, it is important to keep this dressed using suitable gauzes as they can be prone to bacterial infection. I am in the UK and we used a lot of gauzes for my wife's wound, it was called Zetuvit and came in many sizes. Most of the time it was me or my wife's sister that did the dressings, but there are district nurses (here in the UK) that can help with this. I'm not sure if you have similar support in the USA.

I pray the cisplatin combo works for your mom. I come back every once in a while to read the posts in this forum but my thoughts are always with the ladies affected by TNBC and their loved ones.

Best regards,

Manchubby
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