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Joined: Nov 2015
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[quote=ChristineB]Donna, Im not sure if you have been on the main OCF pages. But there is page after page of info that can be a great learning tool. Here is a link to places that may be able to offer financial assistance or other things to help make this easier. I dont know if any would help or not but its worth checking out. There could be something to help with lodging when traveling for treatments.


Main OCF pages---Financial Help [/quote]

Thanks for pointing me to those resources, Christine. We've long since determined that this cancer is going to clean us out eventually, and try to leave the resources for people who have already reached that point. It makes no sense for us to use funds someone else needs more than we do. We'll reach that point soon enough, but are eternally grateful we can pay our own way for now.

As I continue to read the threads here, I realize how fortunate I am to have found this place. I have a much better idea of what to expect, and a comprehensive list of questions for the doctors. It was lonesome, facing this without someone who really knows what's going on. I find great comfort here.


Donna
Caring for Hubby: Age 73

Radiation, Hard Palate: October, November, December, 2011
Hemiglossectomy (side of tongue): December, 2014
2nd Hemiglossectomy (base of tongue): November 2015
Joined: Oct 2012
Posts: 1,275
Likes: 7
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Joined: Oct 2012
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Donna, when you are at the hospital, ask about what kind of support they have for caregivers. Don't overlook your own needs. There may be a support group or social worker they can hook you up with. I see a therapist and I have found that tremendously helpful.

Last edited by gmcraft; 12-02-2015 10:42 AM.

Gloria
She stood in the storm, and when the wind did not blow her way, she adjusted her sails... Elizabeth Edwards

Wife to John,dx 10/2012, BOT, HPV+, T3N2MO, RAD 70 gy,Cisplatinx2 , PEG in Dec 6, 2012, dx dvt in both legs after second chemo session, Apr 03/13 NED, July 2013 met to lungs, Phase 1 immunotherapy trial Jan 18/14 to July/14. Taxol/carboplatin July/14. Esophagus re-opened Oct 14. PEG out April 8, 2015. Phase 2 trial of Selinexor April to July 2015. At peace Jan 15, 2016.
Joined: Nov 2015
Posts: 16
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Posts: 16
So, we've had the dreaded appointments. Wednesday was the Oncology Team and we were pretty much left in limbo. I won't bore you with all the details, but the end result was no to both chemo and radiation. They said they just couldn't recommend putting him through all that when it wouldn't make much difference in the overall picture. We had a worrisome night, but forged ahead with the appointment with the surgeon the next morning.

That appointment was SO much better. He told us last year's tumor and this one were probably related. Even though last year's surgery (at our local clinic) indicated clean margins, and a subsequent biopsy looked clear - there were likely some microscopic cells that got away and formed this new tumor.

This surgeon, at Rush, took a more definitive approach. He not only took the tumor, but also took 1-1/2 cm margins around the tumor and around the old surgery spot. That's a huge margin, but he's positive he got all the cancer this time. He said, in all honesty it could come back next year. Or it could never come back. There's just no way to predict, so we'll remain under close observation.

With the immediate worry behind us now, we can focus on healing and rehab. Doctor says speech and swallow will probably never be really good, but the body learns to compensate. For now, hubby is still on thin purees - but the Rush Dietitian has given us some guidelines and goals. And their Speech Pathologist is working with us on the swallow. We'll worry about speech once we're no longer struggling with nourishment.

Gosh, we love the Team Approach at Rush. They do have a Social Worker for us, Gloria, and she calls every week to see how she can help. Amazing.

Anyhow, even though the immediate crisis seems to be behind us, I do intend to be an active member of this forum. There is just SO much to learn - and the viewpoints and resources here are priceless.


Donna
Caring for Hubby: Age 73

Radiation, Hard Palate: October, November, December, 2011
Hemiglossectomy (side of tongue): December, 2014
2nd Hemiglossectomy (base of tongue): November 2015
Joined: Nov 2006
Posts: 2,671
Patient Advocate (old timer, 2000 posts)
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Joined: Nov 2006
Posts: 2,671
Donna -So glad your appointment was so much better. Sounds like your team at Rush is really awesome! Taking the extra margins around the tumor area is something my son's surgeon did. One of his interns told us that Paul's Surgeon was known to be very "aggressive" because he didn't want to see Paul back again. And that was almost 9 years ago! Paul does have some long term issues but that is better than another surgery. After the surgery, he told us that his tongue would spread out to fit the space it is in and it did! It's true - the body does compensate. And do stay with us. We all learn from each other's experiences.


Anne-Marie
CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)



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