Leave it to Fleener

At 9:30 last night, Stephen's generic cell phone ring went off.
"Oh, great.  That's the worst ring tone because I never know what I'm going to get."

Dr. Fleener was calling us, apologizing for the lateness, but sounding excited about something.

At my treatment earlier in the day, I dropped of her signed copy of my book and she had been reading  ahead, to the point in my treatment when I switched over to her practice.  Reading on, she commented on cancer coming back so quickly after that and me lamenting, "I did everything I was supposed to do!  I even took Tamoxifen when I didn't really want to!"

At that point, Dr. F's mind started zooming back to the pathology reports from the biopsy of that returned cancer.  She looked up in my charts and realized that they didn't have those reports, for some reason, which is why she called.  Did I have them?  NO.

She couldn't remember the percentages of estrogen in the mix, but started wondering if it would be worth it to add some hormonal treatment to what we're currently doing.

She would contact Dr. Naqvi the next day and get back to me.


That she did!  Dr. Fleener was able to get the reports and actually wanted me to come in for an appointment this afternoon.


So.....my estrogen is 30% and HER2 is still high.  All of this makes sense, as I'm still in a remissive state in the rest of my body, and HER2 skipped past what doesn't treat pass the blood-brain barrier.  If cancer would've returned in my liver or lungs, instead of the brain, Dr. F. would've biopsed the cancer to make sure the percentages were the same, but it's difficult in the brain.  She can only guess that it's the same pathology as before.

On one hand, it makes sense not to make any changes to my treatment plan, as I wasn't treating anything hormonally and it still came back in the brain PLUS, it's ONLY in the brain and not anywhere else.  However, she said she's thinking about my case A LOT, and coming up with plans to add, if that's the course I choose.

(Side note:  There is another patient of hers with a very similar story.  We have both given Dr. F. permission to share info with each other.  This patient hasn't had full brain radiation, only partial, as her brain tumors are more localized and she could have surgery as well.  In the last few months, there has been growth in her brain.  She has been to both the Mayo Clinic as well as MD Anderson.  AND>.........drum roll........they BOTH gave second opinions that Dr. Fleener's suggestions would be exactly the treatment they would follow.  This for me is HUGE!!!  I basically have a second-hand second/third opinion, without having to make a trip!)


Here's the list of things on the docket so far:
Estrogen treatment: I can receive a shot mostly/once every three months which would shut down my ovaries and stop estrogen.  Then, I would take a stronger pill, too.  This would cause me to go into menopause, which is something to consider, as I'm still young and might not want to go through that yet.  We would also need to remove my IUD, which potentially could present some problems.  Also, if the no estrogen symptoms are too much to handle, we would simply stop the shots/pills and my body would go back to "normal."  Another thing to consider is that there is not a lot of info on the interaction between this shot/pill and Perjeta---only with Herceptin. I'd be a little bit of a guinea pig!

There are also 2 types of chemo being used in cases like mine which DO pass through the blood brain barrier.  Dr. Fleener isn't talking about doing that anytime soon, she just brought it up as something potentially on the horizon, should cancer decide to come back quickly.

Finally, she reviewed the idea of placing a small port in my brain to directly administer Herceptin straight inside.



Here's where we go from here:

I'm doing another PET scan on April 1.  Insurance sometimes doesn't approve one so soon, but because I had my "normal" PET a week BEFORE finding cancer back in my brain, she could justify another one, just to make sure the rest of my body is still clear.
Then, I have my MRI on April 5.  I'll meet with Fleener on the 5th to review the PET ("Or, I can just call you if you can't come in!") and I'll meet with Goble on the 7th to review the MRI.
After that, we'll go over options and decide about the hormonal therapy.

Dr. Fleener stressed that she doesn't want to blow false hope around or even heavily suggest that we need to change our treatment at this point.  She just thinks about my case a lot---maybe because of my book and the fundraiser event and seeing my name all around.


To think, just having her read my book got this excitement going!!!!


Once again, I know I'm in good hands with Fleener.  We keep putting one foot in front of the other and who knows how far we'll go!