Hi Friends~
Thank you for sharing your words and feelings with me. There is definitely power in numbers and I can feel each every one of you.
I'm so heart broken about Brenda (Hutchibk) and with my scan situation I could hardly bring myself to log on, but knew I had to be back in touch with you, my sister warriors.
So, YES! NED in the HEAD! Thrilled with this news of course, but a little disappointed that the Rad Onc told me that the reason I have a bald'ish path down the center of my skull is bc the WBR can permanently destroy the hair follicle. Uh, NO, I don't recall you telling me that, Doc! I knew that I would lose my hair, but had no idea that it was potentially permanent!?!!? In the scheme of things, this is small potatoes, but I know you all understand the desire & need for the return to normalcy, which to me, includes having hair.
As for the PET of my body, it does look really good, with no other disease other than a lymph node in my chest that has increased in size (~dime) and SUV=13. Initially this was not extremely alarming to me, disappointing yes, but not particularly alarming. Especially because I have had much scarier results with much more significant disease load.
But then I realized the implications of the location of this growing node - it lies adjacent to the Superior Vena Cava, the main vein that returns blood to the heart from the upper body. If this node continues to grow, compress, obstruct the vessel, something called SVC Obstruction, the heart would not be able to withstand that. That would be very bad. There's no indication that the node is currently in contact/compressing the SVC, but my resting heart rate has quite high, WNL, but much higher than norm for me @90bpm's.
Ultimately, my docs say they're not alarmed and have scheduled an echocardiogram for Nov 1, if that's any indication how not so urgent the situation is. I think for my peace of mind I'm going to ask to have it scheduled sooner. Knowledge is Power.
In the meantime, I'll continue on my current regimen of oral Methotrexate 4 days/week, q3week Herceptin and a small change to the oral Cytoxan from daily to every other day. We're trying to give my bone marrow a chance while I stay on continuous treatment, rather than running it down then taking a 2 week chemo break. I need to be on sustained treatment like I was the first 6mos get this node knocked down. But you have to keep your body healthy enough to withstand the chemo in order for the chemo to work. Right now I would not be a candidate to change regimens, if there were any options, because my counts are so low.
I wish it were as simple as eating more spinach and a steak, as many have suggested, but 10years of chemo makes for sluggish, fatigued bone marrow
Right now, just trying not to let the snowball gain momentum and will continue fighting hard.
You all are a treasure to me and I ask that we all now turn our love and prayers towards Brenda.
May she always be in peace and comfort.
Keep the Faith~
Jessica