| | Joined: Jul 2011 Posts: 945 "Above & Beyond" Member (500+ posts) |  "Above & Beyond" Member (500+ posts)
Joined: Jul 2011 Posts: 945 | Ana and Tina, hope all works out well. My husband's diagnosis and then treatment were delayed by (US) Thanksgiving, Christmas and New Year. Very stressful.
Best wishes, Maria
CG to husband - SCC Tonsil T1N2M0 HPV+ Never Smoker
First symptoms 7/2010, DX 12/2010
TX 40 IRMT (1.8 gy) + 10 Cetuximab
PET Scans 6/2011 + 3/2012 clear, 5 year physical exam clear; chest CT's clear of cancer. On thyroid pills. Life is good.
| | | | | Joined: Jan 2011 Posts: 123 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Jan 2011 Posts: 123 | When Ken's biopsies came back positive after his treatments there were areas around his windpipe that lit up. The MO had him go to a thorasic surgeon who said he normally wouldn't even do a biopsy but they wanted to make sure it wasn't cancer (if it was, the idea of total glossectomy would have been re-evaluated to even be worth it). The biopsy on the windpipe ended up being sarcoidosis.
Jill..CG to Ken, age 43,mom of 1yr old girl.
DIAG:12/9/10 SCC BOT T4N0M0 HPV+
START:1/3/11 IMRT dailyX35 and 7 chemo
END:2/23/11 PEG IN:1/15/11 Out:4/26/11
CT/MRI 4/25/11-marked improvement CT 6/11 new spots
BX 6/23-cancer present
Total Glossectomy sched 7/20/11
7/19/11 Ken's suffering ended
| | | | | Joined: Sep 2012 Posts: 381 "OCF Canuck" Platinum Member (300+ posts) | | "OCF Canuck" Platinum Member (300+ posts)
Joined: Sep 2012 Posts: 381 | To be honest I didn't ask. I was so relieved that the nodes were clear that I didn't think to ask at the time. My follow up is Feb 11, and if it shows another positive, I will ask then.
Until then, I am going to hope that I am just really, really lucky...
Tina
Diag: Aug. 13/12
T3N0M0
50% + glossectomy and bilateral radical neck dissection, removal of nodes zones I - V
Surgery October 11/12
Chemo/rad on hold due to clear margins and nodes
Sept 21/13 clear CT with anomaly thought to be the artery, being watched closely.
Dec 16/13 - anomaly confirmed artery, all clear
nickname: "get 'r done"
Plans: kick cancer's butt
| | | | | Joined: May 2012 Posts: 162 Likes: 1 Senior Member (100+ posts) | | OP Senior Member (100+ posts)
Joined: May 2012 Posts: 162 Likes: 1 | So the rollar coaster continued today. The meet and greet turned into a biopsy. Nurse practicioner called while I was making the kid's breakfast, asking me if V had eaten, to which I very honestly answered, "hell no!", not going to let him eat until after the visit. She said they were working on squeezing him in, my guess is, someone finally looked at his PET. Long story short, we get to the hospital, 10 minutes later he's being prepped for his broncoscopy. Pulmonologist came out and gave me the best possible news, granulomas in every sample taken and NO CANCER. It would seem he's got sarcoidosis, official results in a week. Talk about the best freakin' Christmas present EVER for V, me and our teenage boys!
wife/caregiver to Vince, dx 4/12 Stage IV BOT HPV+ SCC, poorly diff.; T4N2cMo; U of C; Clinical trial, Everolimus; 6 wks ind. chemo (Cetuximab, Cisplatin & Taxol), 50 x IMRT, 75 gy chemorad w/5FU, Hydrea & Taxol; 5 years out, thankfully still NED
| | | | | Joined: Aug 2012 Posts: 214 Likes: 1 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Aug 2012 Posts: 214 Likes: 1 | Great news, but what is Granulomas and sarcoidosis?.
Hockey Dad
43, No smoke, Small BOT HPV+16
8/30/12 Biopsy found SCC in Lymph node (removed)
9/19 DX 4a T1N2aM0
10/1 TX 2x Cisplatin 35 IMRT 70 gry (Done 11/15)
PEG tube in 11/7. Out 1/4, Back at work 2/4/13
PET 2/13 Clear, 10/16 all Scopes Clear, 4/14 Chest X-ray Clear, 5/14 Abdominal ultrasound Clear, 8 yrs clean!!!
| | | | | Joined: May 2012 Posts: 162 Likes: 1 Senior Member (100+ posts) | | OP Senior Member (100+ posts)
Joined: May 2012 Posts: 162 Likes: 1 | Hockeydad, we are still learning the answers to those questions. For us, the most important thing they are is what they are not, reoccurant or new cancer. My basic, beginning understanding is, scardodisis causes the granulomas, clumps. Sarcoidosis is an autoimmune disease, perhaps a reaction to the chemo in my husband's treatment. I don't know how common it is in cancer patients, other than to say of our 3 very experienced, top level docs at U of C, my husband is the first case they've seen. 90% of folks who have sarcoidosis live with relatively few symptoms, 10% really suffer. Again, we just started learning about it last Friday, after my the nodes in my husband's check and abdomen lit up hot (SUV 19) on a PET. Our big question now is, how will they be able to monitor him for mets if his chest lights up on PET?
wife/caregiver to Vince, dx 4/12 Stage IV BOT HPV+ SCC, poorly diff.; T4N2cMo; U of C; Clinical trial, Everolimus; 6 wks ind. chemo (Cetuximab, Cisplatin & Taxol), 50 x IMRT, 75 gy chemorad w/5FU, Hydrea & Taxol; 5 years out, thankfully still NED
| | | | | Joined: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Mar 2008 Posts: 3,082 | Ana
Congratulations on the good news. You do not need a petscan to check up on mets, a MRI works just fine. My 3 month checkup will be an MRI not a Petscan and it will be more accurate
Charm.
65 yr Old Frack
Stage IV BOT T3N2M0 HPV 16+
2007:72GY IMRT(40) 8 ERBITUX No PEG
2008:CANCER BACK Salvage Surgery
25GY-CyberKnife(5) 3 Carboplatin
Apaghia /G button
2012: CANCER BACK -left tonsilar fossa
40GY-CyberKnife(5) 3 Carboplatin
Passed away 4-29-13
| | | | | Joined: Jul 2011 Posts: 945 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jul 2011 Posts: 945 | Ana - thank heavens - and the very happiest of holidays to you and Vince!
Maria
CG to husband - SCC Tonsil T1N2M0 HPV+ Never Smoker
First symptoms 7/2010, DX 12/2010
TX 40 IRMT (1.8 gy) + 10 Cetuximab
PET Scans 6/2011 + 3/2012 clear, 5 year physical exam clear; chest CT's clear of cancer. On thyroid pills. Life is good.
| | | | | Joined: Dec 2010 Posts: 5,264 Likes: 5 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | | "OCF Canuck" Patient Advocate (old timer, 2000 posts)
Joined: Dec 2010 Posts: 5,264 Likes: 5 | That Is terrific. Merry Xmas!
Last edited by Cheryld; 12-18-2012 10:28 PM.
Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
| | | | | Joined: Oct 2011 Posts: 805 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Oct 2011 Posts: 805 | Enjoy the Holidays now.... YAY!!
Kathy
Kathy wife/caregiver to:
Kevin age:53
Dx 7/15/11
HPV16+ SCC Stage IV BOT/R
Non smoker, casual drinker
7/27/11 Cistplatin, taxotere,5FU 2/3week sessions, followed by IMRT 125cgy x 60 (2x daily) w/Erbitux weekly. Last rad 10/26/11. Last Erbitux 10/27/11
PEG placed 9/1/11 Removed 11/8/11
Clear PET 10/12 and 10/13 and ct in 6/14
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