Struggling
How do you handle the constant loss of hope? I have only been dx a year and a few months. A lot of drs missed the lymph nodes and said it was related to an autoimmune disorder. I am still angry but just cannot believe my time is going so quickly. I have not responded to the traditional treatments for less than a few months or so. I am getting upset as it goes: I was positive at the beginning.
Comments
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Hi @brandie1, I’m so sorry that you find yourself in such a difficult situation. I don’t have any solutions but my ILD pulmonologist told me there is a connection between scarring diseases like scleroderma and cancer. Both involve transforming growth factor beta 1. In both diseases the tgfb1 is unregulated so what starts as a normal healing process does not stop when it should. Unregulated scarring can affect not only the skin but other organs like the lungs, heart and kidneys which eventually stop working. The unchecked cell division can cause many types of cancer, too., so anyone with a sclerotic disease is much more likely to be diagnosed with cancer. Unfortunately the usual cancer treatments don’t work the way they do in most people and can actually be harmful.
There is promising research being done on tgfb1 but useful applications are years out. I don’t know where you are being treated but getting a second opinion from an interdisciplinary team at large academic hospital might be helpful. Hugs for you.
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Dear @brandie1, we’re so sorry to hear how heavy and overwhelming this feels right now. Please know you’re not alone in these feelings.
We wanted to share that, besides the wonderful support you're getting here in the discussion boards, our Virtual Support Groups include a group just for those living with Stage IV/metastatic breast cancer. It could be a safe space to talk openly about these challenges with others who truly understand what you’re going through.
We hope you’ll consider joining. Hang in there. We’re here for you.
The Mods
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@brandie1 I am so sorry to hear that you are going through this, and wish you a successful treatment that brings you hope again. There are many here who have liver lesions and can give advice, so you may want to post in "Re: How are people with liver mets doing?"
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Hello @brandie1! How are you doing today? Here is the discussion that @tougholdcrow referred to:
Thank you, @tougholdcrow!
The Mods
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Thank you all. I am doing better. See team again tomorrow.
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