kris00j
Forum Replies Created
-
Posts
-
Mary,
I did not have that issue with my SBRT. When we did the simulation they asked if I was breathing normally for me and I said as long as I stayed calm I was. And I think the radiation angles must have been different? So they did not clamp my breathing off, just told me to stay calm which I mostly did… with a little help from my Xanax friends! BTW, my resting breathing is extremely shallow.
Feel free to call me if you need to talk this through. 2676259873. I will warn you that I am battling over precerts, referrals, etc right now so may not be able to answer or may have to interrupt the call.My tests for the trial begin on Tues!! If all goes well and I am accepted, they will schedule the biopsy and the race is on! I’m very excited about this, as I believe God led me to this.
This is how certain I am: I have been wearing a “One Day At A Time” charm for 2 years. It was given to me with the stipulation that when I no longer needed it I gave it to someone who does. Last night I met a young woman who is 1 year out of her 2nd battle with breast cancer. She was also beaten with a baseball bat and has brain damage. She now has my charm…. I figure I am in Gods care and don’t need it anymore, and I was compelled to give it to her last night.And Lainy: guess what? 2 more pennies after I did that! As for who they are from? My grandmother passed 1 month before my fight started. I actually believe its God, but if not, then I think it might be her. She was one strong lady. She passed at 98 years old.
SBRT for me at least “kept in ticking” as Lainy put it, for 7 months, and the radiated cells are still docile, or quiet, or whatever word you want to use. There is still cancer, but it is hardly reactive on the only PET scan I’ve been allowed to get.
The new node is just that: new.
Anyway, the only side effect I had was tiredness. I won’t even say fatigue, because it was just until the next day and then I was fine. I had no reactions, but they do warn you to watch for changes in skin and a few other things (no memory… Thanks chemo!)
My levels are the lowest they’ve ever been. CA19-9 is at 60, which is the lowest it’s been since all this started 2 years ago. And everything else is normal or close.
1 year ago I was supposed to be having my resection, but God had other plans and my lymph nodes blew up and it was cancelled. I have never been jaundiced and never felt sick except from treatments. But I will always be inoperable now, according to Dr. Fong.
Lisa Craine also had SBRT. If she reads this, maybe she will chime in.
Good luck!Mary: the SBRT worked great for me for 7 months! I had a number of places to be radiated and they weren’t sure how the affected areas would react. All was quiet for 7 months. My rad onc says we can revisit SBRT in a few months.
I say relax and let the experts do the calculations and worrying.Lainy will appreciate this…
As many of you know, I’ve been asking God what He wants me to do… Every time I thought things were settling down another wall would slam me… So for the past few months I’ve been asking what he wanted me to do.
Well, I finally had enough after two years and had this really strong urge to finally shop around for a new onc. I decided I liked all Dr. Denlinger had to say. I signed the consent forms for the clinical trial, and God willing, we should get the ball rolling rather quickly to see if I’m eligible.
Now for why I mentioned Lainy… I faxed the papers this afternoon and have found 3 pennies on the floor or ground since then. I think he’s happy that I listened!!Iris:
I strongly recommend another opinion, also. I went to Sloan Kettering in NYC for my second opinion and after battling for a year was told I would never be operable. I am currently changing doctors again after another year in hopes that fresh eyes and ideas will help.
Tiff has advised many people to contact Dr. Javle. I think he actually will give opinions over the phone or thru email if you can send him copies of all your tests and paperwork. His email should be somewhere in these forums.I have been asking god what he wants of me, and saying I can’t figure it out… Well, I am at a place where I can hopefully do so much good for so many people!! And my situation is such that I can try this without too much worry, because where the new lymph node is is not dangerous. So I think He answered my question.
Holly: you are amazing!! Please, please keep us posted!! I’m jealous you went on vacation: I’m always afraid to travel too far from my drs “in case”…
I am thrilled beyond words with your report: no doubt with this attitude you will kick the $hit out of cc.Pam:
Thanks so much for updating us! I’m so happy to hear the news! Give Lauren all my love snd tell her to keep up the good work!!Love seeing such great news! Keep hoping: it helps! Positive attitudes are everything.
Praying her May scans have more shrinkage!HEY!!! GUESS WHAT?? Dr. K. actually listened to me and answered almost all of my questions!!! And mostly to my satisfaction! And I didn’t have to bar the door!
Her recommendation is for me to go back on gem/ox, just a little lower dose so it hopefully doesn’t get too toxic too fast.
We kne the Xeloda/gemzar combo didn’t work, but she said adding tarceva to make GTX might work. Or the other onc might be willing to try tarceva with oxaliplatin. She is asking my original hospital for the biopsied cells to look for markers for a couple of newer chemos! Has anyone seen the real Dr. Kemeny???
Now I get to wait until next Monday to meet the “new” onc and see what she says….I can’t wait to hear the good news. I have a friend who says don’t ask, thank. So I’ve been thanking God all week for Lauren’s successful surgery!!!
I heard back from Dr. Ks office. After 2 years of thinking differently, I was told if the new oncs office will agree to training, they can take over admin of the pump! Really?? Not what I’ve been told the past two years… But good news. I’m hoping Fox Chase is willing to get the training so I CAN get away from Dr. k for good. All the new oncs office has to do is watch the training video and be willing to order the kits. Even the glycerine!! YEE-HAW!!!
