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Mary: Dr. Goodman is awesome! I really liked her. She did one of my embolizations and she was great about explaining everything. I have never dealt with Dr. Yoon.
I love my surgeon and know Sloan is one of the best places there is for cc, but Dr. K has left me feeling like a number too many times. I also like her staff. I WILL travel up there Monday but her nurse practitioner called me and they are willing to train Fox Chase in maintaining the pump if I want to go that way.
I guess maybe Dr. K doesn’t like me, either!I will repeat… YAYAYAYAY!!!
I think they are starting to find SBRT is a very good way to fight this disease.
I am so happy for you! Sorry, but I’m moving Lauren up in my prayers now! I know you’ll forgive me!
Thanks Cathy.
It’s not the money as much as the ??? Of what I will be doing.
Update: the rad onc says no because the new node is too close to one already radiated and he says he might do more harm than good. The good news is I feel healthy. The bad news is I feel healthy. No one wants to make me sick doing something that may or may not work. I have an appt with a new onc on April fool’s Day (appropriate)!! According to my rad onc she has an idea… I have to wait and see… I talked to surgeon again today and am waiting for my current onc to get back to me… Nothing new there. She may be getting fired soon: it all depends on the new onc willing to take over maintenance of the pump…Oh, Holly, PLEASE don’t give up! I haven’t seen any postings from you since your scheduled surgery… How are you?
And, no, it’s not fair!!
I am sending all kinds of love and support and prayers (now that I’m speaking to God again).Mary:
What great news! I go there, too, although I get my radiation at fox chase in Phila because its much, much closer.
I hope you get nothing but good new on Monday. I meet with my rad onc again on Monday, too. The cancer as spread again and I just hope that I can get rad because it worked so well…
Who is your onc and surgeon? I apologize if I know this, but my mind is like a rusty sieve…I agree completely Karen! Although I was diagnosed 2 years ago, I quit drinking soda and eating fast foods about 6 or 7 years ago. I occasionally have to stop at fast food restaurants, but tried to keep it at salads when possible (riding in a motorcycle club… Sometimes it’s easier to stop at BK or McD, etc.)
Hi Mary:
The radiated areas are still nice and quiet. There are no clearly defined edges anymore so that’s good. Unfortunately, I just found out it has spread to yet another node. I am hoping to be able to get stereotactic radiation on this one, too. I meet with the doc on Monday.
I had no side effects… Just a little tired. It was nice to only have to have 5 treatments. Where are you going?Thanks Gavin. I often wonder if the exposure to the chemicals in the film processors I worked with have anything to do with this…
Here’s more. I got the results of my cancer bloods. Everything is down. My ca19-9 is at 62 which is the lowest it’s ever been (its been as high as 1074). My alphafetaprotein is 2.8. The only time it’s been lower is one year ago today. My CEA is at 2.7. It has basically run from 2.3-3.5 most of this journey.
My alkaline phosphates is high at 160. But it hasn’t been under 130 yet. And my bilirubin is basically a constant 0.9. Red, white and platelets are all still a little low, although only platelets are outside “normal” range. Everything else looks good.
And, yes, I spent time licking my wounds. Even got drunk last night, although I know alcohol is one of the worst things for you. And I didn’t get drunk enough! Just 3 drinks, but it prob put me over the limit. Today I hid. Tonight I go back out in public with my public face (which stayed home last night) and work and play poker and sing.
And, on a side note, one of my new songs is Mary Chapin Carpenter’s I Feel Lucky. It was playing on the radio as I drove to the station. And I rerouted around a huge traffic jam and made the train with 1 minute to spare! It was a “lucky” morning and I was so sure I was going to hear good news…. BLAH!!I just feel like I got kicked in the gut!! How can the old cells still be behaving and new ones pop up? Why dont I know when this happens?? We have all gotten so used to listening to every blip in our bodies: I can’t stand that when I’m confident, that’s when things go wrong.., and when I’m nervous because of some twinges, feelings, etc, everything is status quo. It doesn’t make sense.
Cathy: I never had gem/CIS. I was on gem/ox. We had to stop after a few rounds because of toxicity. But it worked great! I met with my surgeon Feb. 2012 and scheduled my resection! I was so excited! Then during an “easy” embolization to prep me for the surgery they nicked my lung. I ended up with pneumonia and in that month the cancer grew again. Ugh! Surgery aborted. This time no surgical options anymore. Went on gem/Xeloda which shrunk the tumor but not the lymph nodes. So we tried stereotactic radiation. It worked! The cells are still quiet after 9 months.
My problem is a new node that just appeared. We now have to do something about it.
There are lots of us out here that are not surgical candidates… Many of us will chime in.
