October 23, 2009 at 1:15 pm #32021lainyParticipant
Kris: Do we all have to fly to you and parade in front of this docs office?
Barb: So very glad you got in so soon! Please let us know what’s happening.
Gavin: Thanks for the new phrase, ” put the screws to him”, just kidding, couldn’t resist.
Well, good morning world, not jubilant, just trying to be very brave today as we have the Radman at 2PM to go over the rising CA19 and the PET Scan
I feel so bad for T as last night he told me how scared he is. Will post tonight with the results.October 23, 2009 at 12:08 pm #32020gavinModerator
Sorry to hear about this delay in you getting to see your new doctor. Hopefully you bringing this situation to the attention of your old onc will get things moving, putting the screws to him sounds like a good plan!
GavinOctober 23, 2009 at 6:08 am #32019
is there anything you can do to speed things up for your scan? if you complain a lot would that help? what’s the deal with the doctor? is there another doc that’s as qualified as the one who’s playing hide and seek with you? i hope you are able to get some action soon.
thank you kris for your support and for telling me about jeff’s lung treatment. i managed to get an appointment with my surgeon (from 2004) for the 30th. i’ve had some lung issues for years; however, i keep getting new clusters and with my marker continuing to rise… more than doubled in 7 months… i’m thinking it’s probably the beast.
i’ll let you know what the surgeon says and i hope, hope, hope you get a scan NOW.
barb hOctober 22, 2009 at 5:11 pm #32018lainyParticipant
Noooo, Lisa, no pain! That oxycodone is something else. I am down to 1/2 a day, really pushing to get off it. We miss seeing more of you. I guess when we don’t hear so much it increases our concern. Hope you find out what is causing the pain. Its so good to see you here any time.October 22, 2009 at 4:22 pm #32017lisaParticipant
I’m having increasing pain experienced as a dull ache in my upper abdomen. Ibuprofen works until bedtime when oxycodone come in.October 22, 2009 at 11:30 am #32016
thanks for the update. I am STILL waiting on my scan. I havent yet met my new doctor despite the fact that he has been in control for almost 2 months. I feel like he is playing House, MD with me and avoiding the patient. His crew of doctors meets me everytime I have chemo where I ask questions, then they try to get in touch with him. It doesnt help that my chemo day is regularly the day he is off somewhere. So we dont know when I am getting my scan. I am bringing up the situation with my old oncologist to put the screws to him (they were former collegues). So I hope like you, the pain is something random.
Glad to hear no more lesions with you, sorry to see the lungs are being problematic. Have they discussed radiation about them. JeffG had some and it seemed to help.
KrisOctober 22, 2009 at 6:22 am #32015
kris i got the results of my pet scan. nothing showed up in my liver or the areas where i’m having so much pain (just like you).
there are more problems in my lungs and my tumor marker went up some more. but…..i was certain, due to the pain i’m having, that the pet would show lesions in my liver, abdomen, etc. i know this isn’t a guarantee, but at least we know that you can have pain and it doesn’t appear to be caused by the cancer….. wellllllllll, as far as accuracy in scans go.
barb hOctober 15, 2009 at 1:39 am #32014
hey kris, i’ve been having increasing pain problems for ???? months…. in the surgical area and then it spreads around to the middle of my back. plus, i’m now getting significant pain on my left side. i have learned that my pancreas is atrophied and i do have dilated bile ducts in my liver. sooooooooooo, i finally was able to get a pet scan today and will get the results on monday. who knows, perhaps i’ll find out something. i just tired of the darn pain and tired of increasing the oxycontin …. gone from 10mg 3x every day to 30mg 3x every day. makes me very tired.
however, this blasted disease is darn near impossible to track as every time i’ve had a surgery there’s always more tumors than what appeared on the scan.
i’m still kicking… against all odds……… hope prevails.
oh yes, about your hair……….. i vote for being wild…. that is if you can handle hans’ reaction at the very least you could try on many wigs and inquire as to dyeing them if you should chose to do so and you could get really creative. later, if you decided you don’t like any of them you don’t have to wear them. you are in the driver’s seat and i say try to have some fun in a situation that you did not expect. you could video the episode and make it entertaining…. life gives you lemons you make lemonade.
barb hOctober 12, 2009 at 9:22 am #32013lalupesParticipant
That’s really good news, Kris. Let’s hope Leroy gets the message quickly & GETS OUT OF THERE.
xxOctober 12, 2009 at 8:58 am #32012gavinModerator
Here’s hoping that the cause of the pain is Leroy taking a good kicking and breaking up as your nurse says. You say the pain started about the same time you started gemzar, so lets hope Leroy really doesn’t like gemzar!!
Best wishes and loads of positive thoughts coming your way.
GavinOctober 12, 2009 at 8:31 am #32011
Just got back from blood tests and asked the nurse. Pain in the tumor region can be good news. It can mean the tumor is breaking apart, it doesnt have to mean the tumor is growing. So hope is still there.
KrisOctober 12, 2009 at 1:31 am #32010hopeandgraceMember
When my mom’s tumor was shrinking (and it shrunk by A LOT!) she was having lots of pain where the tumor was. Hang in there!
Blessings!October 11, 2009 at 11:08 pm #32009
Pains come and go. They disappear with ibruprofin. I am getting scheduled for a scan soon. They said after my first round to see how well I was responding to determine if they would add erbitux to the mixture. To be honest, I am not sure who is really in charge of my case now since I am going to a new hospital for this treatment regime.
I will talk to me nurses in the morning.
KrisOctober 11, 2009 at 9:36 pm #32008marionsModerator
Kris….. Does the pain subside with pain meds? The hot chocolate will taste much better when you are pain free. And, when are you scheduled for another scan?
MarionOctober 11, 2009 at 8:24 pm #32007lalupesParticipant
Hot chocolate & hugs coming your way!! xx
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