Today I am at the hospital, for labs, meeting with Dr. G, and infusions. Grant’s sister Emilia, my sister-not-in-law, who is visiting from Alabama, has come with me today. We had to get up very early to be here for 7:40 a.m. labs!
First of all, my CA-125 is now in the normal range, just barely, but it is, at 31. And that’s after three rounds. So whew!
Visit with Dr. G
Secondly, Dr. G was amenable to just dropping the Doxil at this point. He will order an echocardiogram to check my heart. So I am just doing Carboplatin and Avastin today.
Also, he does strongly recommend PARP inhibitors for me, because I’m HRD+ and platinum sensitive, and wants me to start that in about three weeks, but wants to get the Avastin out of my system before starting them, so I’ll not have the final Avastin-only infusion.
I had a CT scan yesterday and he said it showed something like “significant response to treatment” but it did not say NED, no evidence of disease. That is probably the difference between 31 and 8 for a CA-125 number.
He was not thrilled to hear I’d been talking to Clearity Foundation. He says he gets annoyed with them, because he doesn’t like hearing, “They said I should…” when they don’t have a medical relationship with a patient, don’t know her history, etc. I was clear to say to him that the woman I talked with there very clearly said she was not a doctor and I should discuss the options she was presenting with my doctor, aka Dr. G. I’ll say more about my conversation with Clearity later in this post.
I told him I’ve been having a little case of sniffles, and he recommends getting a flu shot, because I’m immune-compromised, and even on PARP inhibitors will continue to be. Of course, one of my naturopaths recommends staying away from that, so I’ll have to discuss it more further with her about why, and what she proposes to do to boost my immunity in another way. I’ll see her next week.
He said he doesn’t get to tell very many people that their CA-125 is back in the normal range, which is happy for me, but also sobering, really sobering. He’s “been there, done that” with me twice now. Maybe I can now keep it in the normal range this time.
Also, he asked Grant and me (Grant was visiting virtually) what we were going to do to celebrate. And we’re both like, “Um, celebrate? Uh, yeah, I guess we should!” So we’ll have to come up with something to recognize CA-125 normalness. We just got back from a lovely week in the mountains, but it was a work trip for Grant, so maybe that doesn’t really count. Maybe a weekend getaway with no work involved. Grant surely deserves a getaway for being an awesome and super-supportive partner.
So, third of all, I’m now being “infused.” Sans Doxil. Yay! I feel much better about that. Carboplatin is the big gun in this situation. It comes with its own toxicity, but at least it is not a heart-felt discomfort, literally. I’m glad Dr. G was open to leaving Doxil out. And checking my heart.
I also checked with my oncological exercise physiologist Jo about it, and she said that there had been studies that showed that exercise did help offset the heart ramifications of Doxil. I’ll see her next week, too. So I feel I’m in good hands.
Despite Dr. G’s reaction, which I can understand, I found it helpful to talk to the scientist/researcher from Clearity, about all the “conventional” treatment options, and to have her explain things clearly in layperson terms. Dr. G is, like most doctors, under the gun timewise. Deb at Clearity spent an hour and fifteen minutes with me for free. I felt it was very well worth it.
She explained about what she has seen about research about the PARP inhibitors and in which patients it is helpful and how it works. It is most helpful with BRCA patients, which I’m not, but it is also quite helpful with HRD+, and platinum-sensitive, which I am. She explained what HRD+ is, how cells work, what my genetics look like, and that I have a FANCA mutation which might be why I’m HRD+.
She agreed with what I had already been told that at this time the report of the cancer’s genetics don’t indicate that I’m a good fit for any clinical trials she knows of.
Interestingly, she said she had never heard from another patient that they could feel heart discomfort after Doxil, and strongly encouraged me to tell Dr. G. I found it interesting that she’s never heard that. She said she’s been talking to ovarian cancer patient for ten years! So I’m glad I’m done with that. I will do what Jo and Dr. West suggest for healing the heart.
I’ve just been informed I have 12 minutes left of the infusion, so I’ll sign off for now. Thanks for your attention!