r/Ovariancancer • u/BillieBee • 22h ago
Ovarian Cancer patient Some good news at last!
In December 2024, I was diagnosed with Mullerian ovarian cancer. My oncologist rated it as stage 3 while my surgeon considered it stage 4, due to an effected lymph node in my chest. I went through my initial six rounds of chemo but not before discovering that I have a potentially deadly anaphylactic allergy to Taxol.
Then moved on to a hysterectomy with bilateral salpingectomy and oophorectomy with a lot of debulking. After surgery, I completely lost bladder function (not incontinence, but urine retention), and was forced to use a Foley catheter with all the UTIs that come with that. A urologist diagnosed sacral nerve damage probably occurring during surgery and approved me for intermittent self-catheterization instead. It wasn't easy but far better than an indwelling cath.
Four weeks ago, I returned to chemo with the addition of Avastin followed a few days later with a shot of Fulfila. After that first round, I regained normal bladder function. My onc and I are guessing that going back on the large doses of steroids removed inflammation that was impinging on the nerve. That was great news to me!
Unfortunately, a week after that first return treatment, I was hospitalized with sepsis. So four and a half days in the hospital was not my ideal of course, but while I was there, they did a lot of MRIs and CT scans because they were looking for a possibility of meningitis without doing a spinal tap because of course, I'm already immunocompromised. At least one of the CT scans was for chest and abdomen and was taken with the direct purpose of comparing it to my presurgery scans.
This past Friday, I had my normal check-In with the oncologist before my infusion and he told me he had good news. He read a section of the CT scan report and I asked him if that meant I truly had "no evidence of disease" and he confirmed! I'm dancing with NED! While I was getting my infusion, he printed out the report, and wrote on it A + and a smiley face so I could put it on my fridge. All the infusion room nurses had hugs for me.
I completely understand that I still have a lot of treatment and maintenance to get through. And I also get that this is a fragile state that may not last very long before recurrence. But I do want to thank everyone here who has listened and been informative and supportive while I got to this point that I never thought I'd reach. 💖
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u/Professional-Owl483 15h ago
NED is the place to be! I was also diagnosed last December and was declared NED in July, but I've not had to deal with the epic complications that you have had. I'm flying out for two months in UK/Europe in two days' time, and getting married a week after arriving home to Australia. Time to do some LIVING! - congratulations!
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u/BillieBee 15h ago
That is so awesome for you! I've got some treatment left to go, like Avastin for maintenance and some more scans to verify my NED status, but I feel so much appreciation for getting to this point. And it sounds like we were both gifted with a new appreciation for the living we get a chance to do! Congratulations on your health, your travels, and your marriage!
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u/Professional-Owl483 15h ago
Thank you 💙 I'm on olaparib for the next two years, and the side effects, whilst manageable, certainly don't let me forget that I'm still a Teal sister.
You're right about a new appreciation for life. I have a long-standing anxiety disorder, and I've had far fewer issues with it now that one of my worst fears has been realised. It's almost like I can stop holding my breath waiting for something horrible to happen, exhale and relax!
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u/BillieBee 14h ago
I've also struggled with depression and anxiety for decades. I can't say these have gone away or that it didn't sometimes make things a little tough for me going through this time, but I can definitely say I have a new and deeper insight and a welcome sense of perspective that I just didn't have before my diagnosis.
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u/drazil17 22h ago
Celebrate the victories!!!
YAY!!