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#141134 10-05-2011 03:16 AM
Joined: Sep 2011
Posts: 19
Sal Offline OP
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Posts: 19
I have had 2 days of a little bit of peace, my husbands anger seems to have dissipated for a bit, hope it does not come back as he can be quite nasty. It's hard to deal with that while just dealing with life in general, I mean I didn't think that life was gonna be easy but c'mon..give us a break.

One of the funnier things that have occurred is that he has "friended" most of my family on facebook and they all make comments on how lucky he is to have me in his life without knowing that he has been quite the s.o.b...and then I get to read what his responses are. He won't say or do anything that he knows will create a further wedge between us.


CG to husband Rob - Stage IVA Squamous cancer of the left tonsil - T2Na- 8 weeks radiation, 3 weeks Chemo. Smoker, drinker, HPV & Epstein Barre
Sal #141184 10-05-2011 07:00 PM
Joined: Nov 2006
Posts: 2,671
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Sal - How nice that you've had a couple of days of peace. It really does help the caregiving to be a little lighter. Maybe your husband's Facebook activity has helped him to see things more objectively and appreciate you. Any kind of help, no matter where it comes from is certainly welcome in my book, especially when it gives us a break, with a few moments of peace. How good it is of your family to be supporting him and you on FaceBook! Tell them to keep it up. And let us know how it goes. Now I feel better about FB using my personal info for their own gains. "Yay for FB and Friends!" smile


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.)



Anne-Marie #141613 10-16-2011 03:16 AM
Joined: Sep 2011
Posts: 19
Sal Offline OP
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Hi, haven't been around for a bit but some good news..husband has had his feeding tube removed and is now chowing down like there is no tomorrow, he lost about 45 pounds so he is hard at work trying to regain some of it before he goes back to work.

One thing that is bugging me is that he had an appointment with his ENT (she performed his surgery) and she told him he was cancer free. Now I know that would be wonderful but without a new PETscan can they really truthfully make a diagnosis like that? Is it just me or does that seem like they are jumping the gun just a bit? What are your thoughts..

Have a great day ~


CG to husband Rob - Stage IVA Squamous cancer of the left tonsil - T2Na- 8 weeks radiation, 3 weeks Chemo. Smoker, drinker, HPV & Epstein Barre
Sal #142869 11-12-2011 07:37 PM
Joined: Nov 2002
Posts: 3,552
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You didn't list the dates of Tx or Dx in your signature line so I am going to assume it was near your registration date. He may well have had a "complete response" to treatment but in my opinion it's still premature to state that. If (emphasis on "IF") he is going to have a recurrence than there is an 80% probability of that happening within the first year. The % drops to 15% the second year. These are milestone years, especially year one. Years 3-5 the recurrence rate drops to 5%. Researchers like to use the 5 year mark and the NCCN guidelines recommend annual followups after that point. At 8 years my doctors declared me "cured" and stated I needed no further followup appointments (and that they were optional). I am seeing my docs annually now. PET scans are still not recommended for standard followup by the NCCN, only for diagnostic workup. It would seem like it is protocol because so many have them but it is not in the NCCN Oncology guidelines. An annual MRI is a better scan for followup and one that UCSFCCC recommended for me for several years post Tx. It catches the lower part of the brain and part of the lungs which are common areas for distant metastasis. The gold standard followup exam is still direct visualization with mirrors and/or scope with palpation (problem lymph nodes will feel firm and almond shaped). Bloodwork and an annual chest x-ray are also standard.
We are all "cancer free" one day at a time... Even if premature, it is still good news and reason to celebrate! Congratulations.


Gary Allsebrook
***********************************
Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2
Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy)
________________________________________________________
"You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)

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