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Posts (4)

Thu, Jan 17 9:57am · Facing Cancer Recurrence, PTSD & Acknowledging Mental Health in Cancer

Wow. I'm amazed that the very topic of concern for myself is the first one that popped up! I was absolutely certain God had healed me of triple-negative breast cancer of overlapping sites after eight rounds of AC and Toxil followed by a double lumpectomy and removal of seven lymph nodes. At my one year check-up, another lump was found in my breast so I had a mastectomy. Now my Medical Oncologist is suggesting five more rounds of Taxene (almost same as Taxol). Taxol made my lupus and Sjögren's flare severely and caused horrific bone pain. I'm so depressed I can barely get out of bed. I postponed my port surgery and am having a horrible time agreeing to this horrid chemo. Second opinions suggested a different chemo agent but my Oncologist refuses anything but CT. Can anyone relate or have any suggestions? I hate, hate. Hate having more of this chemo! I went to a Psychiatric Hospital but they wouldn't admit me because I wasn't Suicidal (yet).

Tue, Jan 8 8:56am · After breast cancer chemo - Paclitaxel in Breast Cancer

I surely can relate to you as I'm eighteen months post-8 rounds Taxol chemo and still have lingering symptoms. My Neurologist told me that the Neuropathy, Trigeminal Neuralgia and cognitive impairment are likely permanent. I was recently rediagnosed with another triple-negative tumor and am dreading six more rounds of Taxol. It is very distressing but I try to do lots of self-talk and remind myself that chemo is better than cancer. I am uneducated about the procedure you had done on your scalp but as a person with Trigeminal Neuralgia, I can tell you that not only do I suffer from ear pain, a flare of this can cause pain just about anywhere in your head, face and neck. I will pray for you and hope you find an answer to this question.

Oct 26, 2018 · Lupus or not Lupus? in Autoimmune Diseases

Hi. I'm new to this site and read your post. Immediately, I could see everything you went through as exactly what I went through so wanted to tell you what the result was for me. I, too tested on and off for positive ANA. So, Doctors did not consider lupus (SLE) for many years. I had almost every symptom of systemic lupus but the Doctors argued that I could not have lupus with a negative ANA. One day I decided to attend a lupus support group and listening to the members, I was convinced I had lupus. Finally, my new Therapist heard me out and suggested I see his good friend, who happened to be considered the very best Rheumatologist in Atlanta, GA. He was able to get an appointment for me with Dr Gary Myerson. Dr Myerson examined me and said he was pretty certain I did indeed have lupus. He explained that although most Doctors use ANA as their most frequent screening test for lupus, many patients NEVER test positive for ANA, even though they have lupus! He ordered a more specific (and more expensive) test called "double-stranded anti-DNA autobodies" test and the results showed high titers for systemic lupus. After ten years of going from Doctor to Doctor, never finding an answer, and having been called a hypocondriac by one, I finally had the correct diagnosis and was put on Plaquenil which, after about six months had me feeling much better, less fatigued, and reduced the malar, or "butterfly rash" on my face. I am very grateful to this Rheumatologist as I believe he saved me from permanent kidney damage and other possible complications of lupus. Just three years ago I lost a good friend, who passed away at 58 years of age from Systemic Lupus. Call me blessed.

Oct 26, 2018 · Breast Cancer and Neuropathy in Breast Cancer

I have triple-negative breast cancer and medications are ineffective against it. However, I was wondering if you have had chemotherapy as I suffer terribly from Neuropathy caused by chemo, according to my Oncologists and Neurologist. BTW, my Neurologist has been very helpful in prescribing medication (Neurontin) and procedures to lessen the severity of Neuropathy. Hope this may help you in some small way.