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624380 Profile views since 1/29/16 |
So, because of the fracture, I had to take a break from cancer treatment to let my body heal a little. But things are ticking up and there are glimmers of good news now! I had back surgery a couple of weeks ago and that alleviated the nerve pain almost immediately. That particular tumor turned out to be necrotized (destroyed by the chemo and 2nd line of treatment. Whoot - this is where I shout Yay For Big Pharma! ). I still have trouble walking due to severe neuropathy in my feet and shins from chemo (Boo to Big Pharma) but I'll be going back to PT to help with that. Currently, I can barely feel my feet at all. Hopefully, the PT will bring me some relief soon because I love my long walks in the fall!
Other than all the above listed bullshit, my scans continue to be good, with no further cancer progression. My next set of scans will be in December. In the meantime, 2nd line treatment was started up again 2 weeks ago and so far so good - just fatigue and nausea. Eef, my hair is finally growing back! It's about an inch long, lol. I look like a lesbian Art Gallery owner!
Many apologies but I've lost control of my inbox so if you don't get individual responses from me, please don't take it personally.
All the best,
Mrs. Bee
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On 12/5/2023, I was diagnosed with Stage 4 Ovarian Clear Cell Carcinoma (Occc for short). Occc is a rare and difficult to treat form of ovarian cancer that makes up less than 10% of ovarian cancer cases in the United States. Why am I sharing this news here, of all places? It's my goal to spread awareness of this terrible disease, that's why! Between 70 and 80% of all ovarian cancers aren't diagnosed until they are stage 3 or 4, making them more challenging to treat. There are NO reliable tests for early detection and frontline treatment protocols have remained unchanged for the past 30 years. Research is woefully underfunded, despite ovarian cancer being the deadliest of all the gynecological cancers (Only about 20% of women diagnosed at Stage 3 or 4 survive 5 years). Did you know that pap smears DO Not detect ovarian cancer? This is a common misconception that I'm looking to educate people about.
I'm very fortunate to live in a major metro area that has 2 National Cancer Institute research facilities, along with several other world class hospitals doing amazing work to develop new and safer treatment protocols. I have an outstanding care team, including one of the best surgeons in the country and a top tier oncologist with a great support crew of Physicians' Assistants, nurses, and lab techs. Despite a very poor prognosis at the time of diagnosis, along with a few setbacks, I've done pretty well so far. My last frontline treatment is scheduled for May 28. What is frontline treatment? Frontline (aka as first line) is the initial standard of care - surgery to remove tumors and other visible signs of disease, plus 6 cycles of platinum based chemotherapy (a combination of Carboplatin and Paclitaxel, in my case).
I recently started immunotherapy with a monoclonal antibody drug called Avastin. It works by preventing any new tumors from being able to create their own blood supply (ick) - something they are fond of doing! The goal for me is to remain on it for 1 year, provided that my body can tolerate it for that long. It is given by infusion, similar to the way traditional chemotherapies are dispensed.
A couple of weeks after my platinum based chemo is over, I'll be starting an oral (pill form) type of chemotherapy called Lynparza. It's a biologic drug in the Parp-inhibitor family. This particular drug works by preventing the cancer cells from repairing their Dna, which leads to cellular death. The treatment goal here is to keep me on this drug for at least 2 years. Feel free to Google them! These 2 drugs are amongst the very few treatment options available to me and I'll be eternally grateful to my care team for arranging all the genetic and genomic testing to determine if there were any targeted therapies for me because the typical ones are ineffective for my type of cancer. They have given me hope!
6/20/24 Update:
Have started both of the new treatments discussed above. Nausea/loss of appetite/fatigue are the main side effects I'm experiencing but so far so good. Just had my 90 day post op CT scans and the results are favorable: no disease progression and no new disease. Whoot! And lymph nodes show improvement - double whoot!
That's where things stand now. If any one is interested in the earlier updates, you can check out the thread that Bigshipper created in the non-wam forum. Thank you for reading this far! xx
Also, I'm retired! Both from the UMD & from being a fetish model.
I'm forever grateful for the love, the great memories, and the support you've given me over the years!
Take good care of yourselves and remember to have fun - life really is way too short. <3