Unfortunately, I've got some bad news to share.
I had a routine CT scan recently, and there are three small new spots of ovarian cancer. One is near my spleen, one near my left kidney, and one... somewhere else in the lower left pelvic region. After awhile, it all blurs together! There's something questionable near my liver, too, but it's uncertain what that is.
Given the statistics for ovarian cancer, this is disappointing, but not surprising. We just hoped it would either never come back (obviously) or take longer, especially since things have been looking so good and I've been feeling so well.
What's Next?
This is actually really cool. There's a medication that we've been keeping our eye on for several years. It was approved by the FDA at the end of 2014 for women with ovarian cancer AND a BRCA gene mutation, who have already had at least three lines of treatment. Basically, exactly me. And - get this! - it's called Lynparza. I'm calling it LYNNEparza! It inhibits the PARP enzyme that's needed along with the BRCA gene to repair the cancer's DNA. When both of those processes are blocked, the cells die. (Cell death is called apoptosis - "ay-POP-toe-sis" - one of my favorite medical words!)
I'll take 8 medium-sized capsules twice a day. Typical side effects are mild fatigue and low level nausea. And annoyance at taking so many pills, but they left that out of the literature.
I started Monday, and so far, so good. Although I'm working on a theory. Right now, I'm calling it the anxiety effect, and it looks like this: am I extra tired while walking my dogs because I had a busy week and didn't sleep enough, or is it the med? Am I a little nauseous, or am I nervous about side effects? Am I extra thirsty because we had pizza last night, or is it the med? Eye rolling abounds.
We'll do a CT scan in a couple months to see if it's working. If it is, that's fantastic, and I'll keep taking LYNNEparza indefinitely, as long as it works. If it's not working, then we'll talk about other options, including clinical trials.
What do I need?
Please pray that this medication works.
In the meantime, I'm carrying on with life as usual. Maybe a little slower, if the fatigue kicks in. I am going to summer camp with the teens next week... you can pray for that, too, because it's intense and you never know what will happen!
How are we doing?
Well, this is our fifth time around. So we've been over the scary "what ifs" a bunch of times. The first week was an unsettling review of those questions and our answers. We don't know how well this treatment will work, so we're just standing on the foundation of our faith: that God is good, that there is a plan and purpose in this, and that we trust him. This is a reminder to love our people and live our lives well, whether we have months or years left. After all, no one really knows how much time they have left.
Honestly, I am really OK. A little annoyed to be back in treatment when I was just starting to feel like life was back to normal. But this med could work for a long time, so I don't see any need to panic or make big life changes.
FAQ in case you're wondering... :)
Are we SURE it's cancer?
I'd say 99.9%. I asked my oncologist this. I was very happy to hear she had already asked the radiologist. One of our best radiologists is convinced it's more ovarian cancer. She's looked at most (maybe all) of my CT scans, so she knows more about my insides than anyone except God and maybe my surgeon. And she knows how ovarian cancer presents.
Should there be a biospy?
We could biopsy a spot or two, but the areas aren't easy to access. So rather than spending time on further investigation that wouldn't sample every spot and that would be fairly risky, we're starting with the medication. This way, we start attacking everything seen or unseen anywhere in my body.
Why not surgery?
Typically, ovarian cancer comes back the second time as a "white wash" of small areas all over. This is the fifth time (!!!) for me and this time, it seems to be headed in that direction. The assumption is there is more that we can't see yet. (I believe this CT interval was at exactly the right time: late enough to see something, early enough not to see much.) Instead of wasting time prepping for and recovering from surgery, we're starting something that will address cancer cells throughout my system.
Why not chemotherapy?
Because, UGH! No, thank you. But technically, this is a chemotherapy, too. I have the same taste in my mouth already. :( The cancer has survived in spite of the six chemo drugs I've had already had, so going back to them doesn't make sense for me. There is another option or two, but it's less likely to work than the LYNNEparza.
Are we sure this is the right treatment?
I have no doubts about this medication. It is something we wanted to try earlier, but it wasn't available yet. I've had conversations with my surgeon and my former oncologist about what we'd do if the cancer came back, and it was what my new oncologist concluded as well. Results have been good for others, so I believe this is my best bet at this point.
I think that's everything - let me know if you have other questions!
Thank you all for your love and support. Here we go again...
Well obviously a drug called LYNNEparza is the answer! Sending you love, prayers, and healing HUGS from Minnesota! Keep us updated as you know more... xoxo
ReplyDeleteLynne, you are being held closely in my heart as you start this new part of your journey. Of course, I am wishing you all the best. Warm hugs, Luann
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