Good morning everyone š
I wanted to give a little update to whatās been happening. A while back I posted a long post explaining all of the crazy symptoms I have been having over the last 18 or so months and that all of the specialists Iāve seen have said itās likely long term side effects from the immunotherapy. Unrelated to the cancer or trial meds...I had a pretty bad fall in 2017. I landed on my left side and ended up damaging my left breast implant, shoulder, elbow etc. I was consequently diagnosed with neurogenic thoracic outlet syndrome, ulnar nerve entrapment and a left breast capsule rupture. Not the implant itself...just the capsule of scar tissue around it that holds it in place. I was told the rupture would heal in a few months and the symptoms (pain, swelling) would subside. They never subsided so I kind of just learned to live with it and wear compression garments to control swelling and pain. I knew I would eventually just have the implant removed and that would be that. 3 months after the fall I started having headaches, continual low grade fevers, severe fatigue, blurry vision, thyroid nodules, I gained a ton of weight, heart palpitations, really bad chest and breast pain, weird rashes, night sweats etc. When I saw my doctor they chalked it up to the trial drug (which I hadnāt had in 2+ years. Iāve been to the neurologist, endocrinologist, rheumatologist, vascular surgeon, eye surgeon ..the list goes on. I have a thyroid nodule biopsy today and a lacrimal gland biopsy in two weeks. I decided to do a little research of my own and what I found blew me away. Thereās a breast implant āphenomenon ā for both saline and silicone implants that theyāve dubbed Breast Implant Illness, or BII. The list of symptoms is unbelievable...40+ symptoms and I have every single one of them except for gallbladder issues. The article(s) went on to say that most women end up with a false diagnosis of Lupus, MS, and other autoimmune diseases that in reality...they do not have. By the time most women figure this out they are so ill they are in wheelchairs preparing to die. No joke. PREPARING TO DIE. As it turns out, either for no reason or by way of a trauma to the breast and implant, bacteria can seep in through the fill valve and cause black mold to form. This bacteria and mold will cause all of these symptoms that mimic these other diseases and itās hard to diagnose because most of the lab tests donāt pick it up. When someone dies from this āunknown diseaseā and has an autopsy done, theyāre finding totally black and moldy breast implants in their chests. The only cure for BII is having the implants removed and then having a long course of IV antibiotics and anti fungal medications. Most will recover but some donāt. Eventually the disease spreads throughout the body and the person dies. I was having a hard time accepting that all I was feeling was related to a drug I hadnāt had in years. I now believe that all of my symptoms are BII related and that it is imperative that I have these implants removed immediately. Iām just so gobsmacked that not one of the doctors Iāve seen has even considered this as an option and I think there needs to be more awareness about the dangers of breast implants whether they are silicone or saline. The type I have is saline with a textured shell and fill valve. As it turns out, thatās the most dangerous kind. I now face an expensive surgery that likely wonāt be covered by my insurance and a hospital stay that may or may not be covered by insurance. Luckily (if you want to see it that way) I took matters into my own hands and decided to do research on my own. They say to never self diagnose using the internet but had I not, I would just continue to be plagued with a mysterious ādiseaseā and would have continued to blame immunotherapy. Am I 100% sure this is the problem? No. But Iām about 99% sure and thatās enough for me to want these things out immediately. Originally my oncologist said that I had to wait until this coming January (5 year mark from NSCLC diagnosis) but Iām not going to wait and I assume he will clear me for surgery because the longer I wait, if it is BII then Iām risking permanent damage and or death. Please take note of this for anyone with breast implants. Have your implants checked on a yearly basis to check for leaks, or any changes in size or shape. If youāre experiencing any of the symptoms Iāve noted (I only listed a few and there are more than 40) please donāt let anyone convince you that itās nothing and all in your head. When a perfectly healthy person (aside from the cancer as that was resolved) is so ill that they are continually sick and nothing shows up on labs, and they canāt fogure out whatās wrong, and you have implants...see a surgeon who specializes in implant explantation and have them removed. No amount of vanity is worth this torture..and it has been torture. When one breast is double the size of the other one and is so painful that you have to wear compression garments just to function...something is wrong. I knew they needed to come out but I was convinced that the swelling was because of the trauma. Two years?? What was I thinking. I guess I was thinking like the doctors and blaming it on immunotherapy was logical since the long term side effects arenāt well known yet.
Sorry to have gone on so long. I just wanted to get this out there for anyone suffering from the same symptoms. Had I known that mold and bacteria growth was even a possibility I would never have gotten these things 20+ years ago. The longer they are in the more likely there will be damage to them and eventually the implant will break open, spreading all that toxicity to the rest of my body.
Thanks for taking the time to read this and wish me luck! Iād rather be boob less then dead š
my story
Keytruda
Mom dx with stage 4 lung cancer
