Class of 2012 isn't doing too good....UPDATE!!!!!
Comments
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Great newsphrannie51 said:Back when I was first diagnosed....
I met a girl on this forum from my area....she was immensely helpful to me then. We've remained friends since, and the other night I messaged her on FB and told her what was up. Because she's an RN she asked if I wanted her to advocate for me, and I said yes. So....just in this one day, my PET scan has been moved up to tomorrow instead of having to wait until the 27th....and the appointment with the Oncologist has been moved to the 28th from November 2nd. Thank you Staceya!!
Knowing that all of you guys have my back is comforting, too....you don't know how much that means to me.
p
Often it is who you know not what you know.
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Wearing an extra pocketphrannie51 said:Back when I was first diagnosed....
I met a girl on this forum from my area....she was immensely helpful to me then. We've remained friends since, and the other night I messaged her on FB and told her what was up. Because she's an RN she asked if I wanted her to advocate for me, and I said yes. So....just in this one day, my PET scan has been moved up to tomorrow instead of having to wait until the 27th....and the appointment with the Oncologist has been moved to the 28th from November 2nd. Thank you Staceya!!
Knowing that all of you guys have my back is comforting, too....you don't know how much that means to me.
p
just for you today Phrannie. I'm glad the timeline moved up - that means you'll be better that much sooner. We're behind you 110%, supporting you, loving you, and praying for you.
Barbara
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Advocatesphrannie51 said:Back when I was first diagnosed....
I met a girl on this forum from my area....she was immensely helpful to me then. We've remained friends since, and the other night I messaged her on FB and told her what was up. Because she's an RN she asked if I wanted her to advocate for me, and I said yes. So....just in this one day, my PET scan has been moved up to tomorrow instead of having to wait until the 27th....and the appointment with the Oncologist has been moved to the 28th from November 2nd. Thank you Staceya!!
Knowing that all of you guys have my back is comforting, too....you don't know how much that means to me.
p
I'm so glad you don't have to wait an extra week. Time passes so slowly when you're on pins and needles. Thank God for friends, especially those who have been through days like these. Keeping you in my prayers!
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Staceya YOU ROCK!phrannie51 said:Back when I was first diagnosed....
I met a girl on this forum from my area....she was immensely helpful to me then. We've remained friends since, and the other night I messaged her on FB and told her what was up. Because she's an RN she asked if I wanted her to advocate for me, and I said yes. So....just in this one day, my PET scan has been moved up to tomorrow instead of having to wait until the 27th....and the appointment with the Oncologist has been moved to the 28th from November 2nd. Thank you Staceya!!
Knowing that all of you guys have my back is comforting, too....you don't know how much that means to me.
p
Go TEAM PHRANNIE!
Deb
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Hope things went well today.phrannie51 said:Back when I was first diagnosed....
I met a girl on this forum from my area....she was immensely helpful to me then. We've remained friends since, and the other night I messaged her on FB and told her what was up. Because she's an RN she asked if I wanted her to advocate for me, and I said yes. So....just in this one day, my PET scan has been moved up to tomorrow instead of having to wait until the 27th....and the appointment with the Oncologist has been moved to the 28th from November 2nd. Thank you Staceya!!
Knowing that all of you guys have my back is comforting, too....you don't know how much that means to me.
p
Hope things went well today. I'll continue to pray for much favor in every area: for the doctors to make the right diagnosis and treatment plan, for the treatment to work to perfection with mild side effects, for strength, for love and support to come even from unexpected places and for complete recovery! Sending you much love
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ENT called tonight....
I almost didn't answer the phone, except that 1) the ENT never calls in scan results...and 2) I just had the scan this morning, so I felt safe answering the phone. Aw.....but he DID have the scan results....and my knees went weak, and I almost told him I didn't want to hear over the phone.
Results: The only cancer found in the entire PET scan was two lymph nodes under my clavicle....nothing in the nasopharnyx, nothing anywhere else in my head, not in the lungs, not in the liver....nothing anywhere else. Ok, ok....so it's still cancer, but it's treatable....The tumor board meets next Tues, and my case is getting looked at....Depending on where the last rads ended, I might be in for some rads (they just put in a SBRT machine at this hospital just this year....that's the kind of rads hwt (Candi) got at Mayo....or I may not.....Oncologist may suggest more chemo, or may not....the only thing for sure is a neck dissection in November.
I love this new ENT...I loved my old one, too....but this guy has called me twice, tells me what's going on, and is a gentle soul t'boot....I asked him how I could have cancer cells in my nodes, but no where else.....he said they may have been laying dormant..sick but not dead from the former treatment....and have just now come to life. I am SO grateful it's not NPC again....
I love you guys....I don't know what I would have done without you this last week.
p
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The good; the bad; and ugly.phrannie51 said:ENT called tonight....
I almost didn't answer the phone, except that 1) the ENT never calls in scan results...and 2) I just had the scan this morning, so I felt safe answering the phone. Aw.....but he DID have the scan results....and my knees went weak, and I almost told him I didn't want to hear over the phone.
Results: The only cancer found in the entire PET scan was two lymph nodes under my clavicle....nothing in the nasopharnyx, nothing anywhere else in my head, not in the lungs, not in the liver....nothing anywhere else. Ok, ok....so it's still cancer, but it's treatable....The tumor board meets next Tues, and my case is getting looked at....Depending on where the last rads ended, I might be in for some rads (they just put in a SBRT machine at this hospital just this year....that's the kind of rads hwt (Candi) got at Mayo....or I may not.....Oncologist may suggest more chemo, or may not....the only thing for sure is a neck dissection in November.
I love this new ENT...I loved my old one, too....but this guy has called me twice, tells me what's going on, and is a gentle soul t'boot....I asked him how I could have cancer cells in my nodes, but no where else.....he said they may have been laying dormant..sick but not dead from the former treatment....and have just now come to life. I am SO grateful it's not NPC again....
I love you guys....I don't know what I would have done without you this last week.
p
Good he is nice and called. Good it is small and not like any of the other. Bad you do have it, but it is small and not ugly.
Bill
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Go team Phrannie!wmc said:The good; the bad; and ugly.
Good he is nice and called. Good it is small and not like any of the other. Bad you do have it, but it is small and not ugly.
Bill
I am glad of the limited dx and that it is now onto the planning/tx stage. Am so glad to have been of help.
Love to you...l
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Stacey...if it hadn't been for youstaceya said:Go team Phrannie!
I am glad of the limited dx and that it is now onto the planning/tx stage. Am so glad to have been of help.
Love to you...l
I'd still be out here shaking in my boots, trying to keep my mind from sticking it's nose into the future!! I sent you a copy of the note above on FB, cuz I didn't know if you come in here any longer.
You are an amazing advocate....and I'm SO SO lucky that I met you here....
p
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That's GREAT news!phrannie51 said:ENT called tonight....
I almost didn't answer the phone, except that 1) the ENT never calls in scan results...and 2) I just had the scan this morning, so I felt safe answering the phone. Aw.....but he DID have the scan results....and my knees went weak, and I almost told him I didn't want to hear over the phone.
Results: The only cancer found in the entire PET scan was two lymph nodes under my clavicle....nothing in the nasopharnyx, nothing anywhere else in my head, not in the lungs, not in the liver....nothing anywhere else. Ok, ok....so it's still cancer, but it's treatable....The tumor board meets next Tues, and my case is getting looked at....Depending on where the last rads ended, I might be in for some rads (they just put in a SBRT machine at this hospital just this year....that's the kind of rads hwt (Candi) got at Mayo....or I may not.....Oncologist may suggest more chemo, or may not....the only thing for sure is a neck dissection in November.
I love this new ENT...I loved my old one, too....but this guy has called me twice, tells me what's going on, and is a gentle soul t'boot....I asked him how I could have cancer cells in my nodes, but no where else.....he said they may have been laying dormant..sick but not dead from the former treatment....and have just now come to life. I am SO grateful it's not NPC again....
I love you guys....I don't know what I would have done without you this last week.
p
i logged in tonight hoping to hear something like that. I'm so glad! :-)
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fight modephrannie51 said:Stacey...if it hadn't been for you
I'd still be out here shaking in my boots, trying to keep my mind from sticking it's nose into the future!! I sent you a copy of the note above on FB, cuz I didn't know if you come in here any longer.
You are an amazing advocate....and I'm SO SO lucky that I met you here....
p
P,
Didn't know how to respond to your post until now. Bless Stacey for being there for our friend and bus mate. I'm so grateful to her and your ENT ! You got this girl, know your tucked in many, many pockets throughout. Many hugs and warmest thoughts sent your direction. Katie
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Phrannie, it's great to hear the update!
my boyfriend also had neck dissection 8 months after NPC treatment to remove cancerous lymph nodes. Just to let you know that the surgery itself is not bad. He recovered quickly and the pain level is nothing compared to radiation/chemo therapy. He doesn't have additional chemo or radiation so far. I am abit worried about this part. If you will have other treatment please keep us updated.
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Encouraging newsphrannie51 said:ENT called tonight....
I almost didn't answer the phone, except that 1) the ENT never calls in scan results...and 2) I just had the scan this morning, so I felt safe answering the phone. Aw.....but he DID have the scan results....and my knees went weak, and I almost told him I didn't want to hear over the phone.
Results: The only cancer found in the entire PET scan was two lymph nodes under my clavicle....nothing in the nasopharnyx, nothing anywhere else in my head, not in the lungs, not in the liver....nothing anywhere else. Ok, ok....so it's still cancer, but it's treatable....The tumor board meets next Tues, and my case is getting looked at....Depending on where the last rads ended, I might be in for some rads (they just put in a SBRT machine at this hospital just this year....that's the kind of rads hwt (Candi) got at Mayo....or I may not.....Oncologist may suggest more chemo, or may not....the only thing for sure is a neck dissection in November.
I love this new ENT...I loved my old one, too....but this guy has called me twice, tells me what's going on, and is a gentle soul t'boot....I asked him how I could have cancer cells in my nodes, but no where else.....he said they may have been laying dormant..sick but not dead from the former treatment....and have just now come to life. I am SO grateful it's not NPC again....
I love you guys....I don't know what I would have done without you this last week.
p
Well that sounds very encouraging. Hopefully this second lot of tratment won't be as bad your first.
Cancer is bizarre how it behaves sometimes. Not the same as head and neck but I was speaking with a lady a few days ago who had breast cancer treatment 16 years ago at the age of just 32. Then in June she had a recurrence of breast cancer in her lung. Had it been laying dormant in her lung or blood/lymph system all this time? If so, why just "re-activate" now?
Her oncology team couldn't really give her an explanation other than to say it was very unusual to get it back at a distant site after so long but these things do happen from time to time and basically she's just been really unlucky (she's responding well to treatment BTW)
Anyway, I know you'll keep us in touch with your progress and continuing to send you good vibes all the way across the Atlantic.
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Glad to hear it's limited.phrannie51 said:ENT called tonight....
I almost didn't answer the phone, except that 1) the ENT never calls in scan results...and 2) I just had the scan this morning, so I felt safe answering the phone. Aw.....but he DID have the scan results....and my knees went weak, and I almost told him I didn't want to hear over the phone.
Results: The only cancer found in the entire PET scan was two lymph nodes under my clavicle....nothing in the nasopharnyx, nothing anywhere else in my head, not in the lungs, not in the liver....nothing anywhere else. Ok, ok....so it's still cancer, but it's treatable....The tumor board meets next Tues, and my case is getting looked at....Depending on where the last rads ended, I might be in for some rads (they just put in a SBRT machine at this hospital just this year....that's the kind of rads hwt (Candi) got at Mayo....or I may not.....Oncologist may suggest more chemo, or may not....the only thing for sure is a neck dissection in November.
I love this new ENT...I loved my old one, too....but this guy has called me twice, tells me what's going on, and is a gentle soul t'boot....I asked him how I could have cancer cells in my nodes, but no where else.....he said they may have been laying dormant..sick but not dead from the former treatment....and have just now come to life. I am SO grateful it's not NPC again....
I love you guys....I don't know what I would have done without you this last week.
p
Glad to hear it's limited. Keep fighting and God bless!
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The way the ENT explained it
I got a mental picture of a few cells....all battered and beaten....holing up in a lymph node to lick their wounds....three years later they're feeling good enough to rock and roll...Ah, but we caught them before they've left their little fort. Their next home will be in a garbage can where they can't do any shenanigans....
p
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Mestatic breast cancer works that way....GavinP said:Encouraging news
Well that sounds very encouraging. Hopefully this second lot of tratment won't be as bad your first.
Cancer is bizarre how it behaves sometimes. Not the same as head and neck but I was speaking with a lady a few days ago who had breast cancer treatment 16 years ago at the age of just 32. Then in June she had a recurrence of breast cancer in her lung. Had it been laying dormant in her lung or blood/lymph system all this time? If so, why just "re-activate" now?
Her oncology team couldn't really give her an explanation other than to say it was very unusual to get it back at a distant site after so long but these things do happen from time to time and basically she's just been really unlucky (she's responding well to treatment BTW)
Anyway, I know you'll keep us in touch with your progress and continuing to send you good vibes all the way across the Atlantic.
I've seen it over and over. I have friend who was clear for 3 years, and it came back in her lungs.....another friend who is in treatment now, who went 12 years....it showed up in a tumor behind the chest wall....another tumor in her hip, and several on her spine....she's in treatment again now. Both ladies will be in treatment the rest of their lives.
p
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Explained like that is great news........phrannie51 said:The way the ENT explained it
I got a mental picture of a few cells....all battered and beaten....holing up in a lymph node to lick their wounds....three years later they're feeling good enough to rock and roll...Ah, but we caught them before they've left their little fort. Their next home will be in a garbage can where they can't do any shenanigans....
p
Just take out the trash!!!
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This is Wonderful News!phrannie51 said:ENT called tonight....
I almost didn't answer the phone, except that 1) the ENT never calls in scan results...and 2) I just had the scan this morning, so I felt safe answering the phone. Aw.....but he DID have the scan results....and my knees went weak, and I almost told him I didn't want to hear over the phone.
Results: The only cancer found in the entire PET scan was two lymph nodes under my clavicle....nothing in the nasopharnyx, nothing anywhere else in my head, not in the lungs, not in the liver....nothing anywhere else. Ok, ok....so it's still cancer, but it's treatable....The tumor board meets next Tues, and my case is getting looked at....Depending on where the last rads ended, I might be in for some rads (they just put in a SBRT machine at this hospital just this year....that's the kind of rads hwt (Candi) got at Mayo....or I may not.....Oncologist may suggest more chemo, or may not....the only thing for sure is a neck dissection in November.
I love this new ENT...I loved my old one, too....but this guy has called me twice, tells me what's going on, and is a gentle soul t'boot....I asked him how I could have cancer cells in my nodes, but no where else.....he said they may have been laying dormant..sick but not dead from the former treatment....and have just now come to life. I am SO grateful it's not NPC again....
I love you guys....I don't know what I would have done without you this last week.
p
Relatively speaking, of course. I am so happy hearing about your results! You do have a wonderful relationship with your doctor.
Deb
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News
Phrannie, it's awesome that you have an ENT who is so caring and laid out some plans for you so quickly. I'm so happy it's not NPC. Why it turned up in the nodes now is a mystery, like so many things associated with this disease. You are always in my prayers!
0
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