Hi, my name is Indi. I posted here when it was announced you were going to begin a foundation devoted to "triple negative breast cancer".
Lost my password, got posting at a few other sites, and between recovering from treatment and trying to stay informed, guess it kept slipping my mind to check back into the Discussion Boards here. Still can't remember who I signed in as, but I know I did because I pledged. Oh well. Typical chemobrain-o-pause from A/C x 4, 12 wkly Taxol, 32 Rads, after dx IDC, Grade 3, Stellate 1.7 cm. Tumor, 2.5 cm. long, and 2.2 mm from the chest wall, chose a "lumpectomy, which was really a partial mastectomy. 4 Sentinal Nodes Removed, all negative; there was vascular invasion present.
I didn't know or understand the "triple negative" remark until I had to search for a good surgeon, and even then nothing was explained. After going to 5 Oncologists, I finally got the picture. I was being treated for a Stage IV Disease when I was a Stage I. After, I was upset, because, had I known I'd have the same treatment, I would have had a bilatteral, no nodes taken, and possibly a much less aggressive chemotherapy. It was stupid on my part, because I was being a coward instead of using my head. It was Not for cosmetic reasons. I couldn't care less about breasts. Now, it's all a crapshoot.
After surgery a large hematoma in the breast (huge, actually) and a seroma the size of an apple in my armpit, forced me to wait for chemo while taking antibiotics to reduce infections in both. I think I started chemotherapy on Valentines Day of 2006, or was it the 13th, Friday of February? I remember the hearts, flowers, and adriamycin bag as it's red fluid slopped into the vein as I shivered in fear, and was cheered by the cherubs and the candy hearts...: Be Mine, Love Always, Here We Go, you know the cute little candy hearts with sayings. There was candy all over that Clinic. The nurses were so wonderful, how I love them all.
So, it will be one year this Halloween, 07 since I had the last radiation boost. So far, I have only had the digital mammograms as follow-up tests, and the bloodwork is stable. No other scans or markers. I am in a lot of pain from the cumulative side effects, however.
I've been reading and reading, and trying to figure out why I feel so ill all the time. I have had every symptom which corresponds to Celiac Disease, a genetic illness which you may know about. I thought it was an allergy to wheat, but actually it's a reaction one's body has to proteins in glutens and the body reacts by producing T-cells which produce an overload of antibodies, and I think, indicate some receptors are out of order.
Not unlike triple negatives; I believe, have a receptor somewhere which is "out of order".
Years ago, I lived next to a Grain Elevator, and was extremely sick, coughed and coughed; thought I had athsma. We moved, and the asthma, IBS, Intestinal Problems, Incontinance, Acid Reflux, Fibromyalgia or whatever it was, all disappeared.
I went to countless physicians when I lived there, and not one could tell me what was causing all the problems. I thought I had Psitacosis, a disease one gets from Parrots, as we had two parrots. Went to an Immunologist, all he said was: Oh, well at least we know your immune system works; T-cell count was way over the top. The Allergists, saw many, finally decided I was allergic to ragweed, mold, chickens, and feathers.
So, I haven't been the greatest, and this story is all ready too long.
Lived in our new house for a couple of years. I had suffered miscarriages, and apparantly it's not uncommon in women who have Celiac Sprue Disease, along with, Fibromuscular pain, bone pain, diarrhea, constipation, joint pain, indigestion, weight loss or gain, thyroid problems, skin infections and rash (did I mention I had rashes on and off, especially during chemo?).It's called Herpetiformis Dermititis in Celiac patients, and comes and goes without warning, in blisters and rash. You can read more, but my nephew has this disease, and my young brother has psoriasis and all the symptoms of celiac sprue, as well. Peripheral Neuropathy is another symptom, which I have had, but was completely flattened by after Taxol.
So, if anyone is reading this, I am wondering...could there be a connection between Triple Negative Hormone Receptor Cancer and the Celiac Sprue Disease, which is an immune disorder? They certainly seem to have much in common, along with this fact.
5 in 125 (might be 3 in 125) people in the U.S. have this disease, but only 3% have actually been diagnosed. It's a disease that often gets misdiagnoses because it has the same "chameleon" , presents like other diseases, but not. There are several tests, as well as blood, skin, and biopsy of the small intestine to test the little villi that process food. Often people might suffer with wheat allergy as children, and their growth is stunted due to the fact that this disease "blocks" the nutrients from being absorbed. Or it can lie dormant and silent and something like "chemotherapy", might wake it up. But the test is there.
I am having it tomorrow. I hate the cancer, my mother died of Inflammatory Breast Cancer at 67. That was in the early 80's, and even though they gave her tamoxofin, I suspect she was also a triple negative.
We looked like triplets, mother, brother and I. She also had all of the physical problems I discussed. She just didn't complain.
Well, nice to meet you all, and sorry to go on and on. I figured, since this is the ONLY Triple Negative Only site in the world, someone might be on to the same idea. I just plundered into it tonight, er, today... so must sort it out.
I will let you know how the test goes, if you are interested. Didn't fill out the profile here, yet. It's likely we've met on Bc org or nosurrender, and a few others, since we trip negs are always searching for answers, it seems.
Have a lovely day! Thanks for this sight. Maybe my brain is really returning, after all!