| | Joined: Sep 2012 Posts: 74 Supporting Member (50+ posts) |  Supporting Member (50+ posts)
Joined: Sep 2012 Posts: 74 | I love Herman's Hermits! Wonderful that you and your wife were able to have a slice of normalcy/fun in this otherwise messed up time. Karen
mausmarrow.com
Age 59 ex-smoker 1989
1/10 dx MDS (blood cancer)
2010-11 21 cycles Vidaza
11/10 Bone Marrow Transplant
8/31/12 dx SCC left BOT HPV 16+ T1N2cM0
10/11/12 TORS partial glossectomy clear margins
10/24/12 bilateral ND/ii-iv 92 nodes all clear
10/30/12 dx revised T1N0M0 no chemo or rads
| | | | | Joined: May 2012 Posts: 162 Likes: 1 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: May 2012 Posts: 162 Likes: 1 | Very glad the Caphasol has been of some help Charm. So glad you and the Mrs. had a wondeful evening...those days or normalcy are so few and far between when in the trenches. Those are some really great songs you mentioned. It's amazing how powerful music can be, especially when you're dealing with this beast. A
P. S. During our time in U of C, there were a couple of musicians (guitar and cello) who came in once a week to play for the patients...this was their music ministry. The were very good and could play anything. We found that music took on an extra special meaning when you're sitting next to an IV pole of 5FU and listening between rads. That said, one week, a patient took over the guitar, starting singing a gospel song, something we would have ordinarily loved, however listening to him sing about waiting for his loved one on the other side of the shore was just too much for all of us.
P.S.S. You are now in the same catagory as Eric for making me cry this morning...keeping my eye on you!
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: Oct 2011 Posts: 67 "OCF Canuck" Supporting Member (50+ posts) | | "OCF Canuck" Supporting Member (50+ posts)
Joined: Oct 2011 Posts: 67 | You brought back wonderful memories for me Charm. I know all the songs. Peter Noone is bi-polar I (the really crazy kind), and I admire him so much for dealing with the disorder.
During my SCC treatment and subsequent behaviour, the Neurologist referred me to the psychological counseling program. I was diagnosed with bi-polar II (the less crazy kind).
Before all this, I thought that dying of cancer would be better than living with depression, but I digress.
Your eloquent words bring hope and wonderment. Thank you.
Pain late 2009. Dx as change in altitude. Sore spot on tongue late 2010. Dx as irritation.
Leukoplakia Bx Feb 2011 - Lichen Planus.
Bx May 2011 - Hyperplasia. Same sample retested as SCC.
June 2011 Rt Hemigloss,ND,rff,33 Rads. Hosp for 15 days w/bi-lateral pneumonia.
T3N1M0 Stage IV.
| | | | | Joined: Oct 2011 Posts: 805 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Oct 2011 Posts: 805 | So glad you had a night out Charm. Sounds like it was a great date night!!
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
| | | | | Joined: Aug 2012 Posts: 4 Member | | Member
Joined: Aug 2012 Posts: 4 | Charm, so sorry to hear about this. I just finished 36 radiation treatments and 7 chemo treatments and I thought that was rough. I logged on to find out about the recurrence of HPV 16 + and I guess this isn't what I was hoping for at all. When I first joined this site I had no idea what all that stuff at the bottom of everyone's profile meant and now I understand most all most all of it. I will keep you in my prayers. God Bless.
BOT right side to the midline also some SCC in lymph nodes on both sides of neck/IMRT 36X 7 chemo treatments with Carboplatin. I received this type because I had previous hearing loss or so that's what I was told. HPV 16+
| | | | | Joined: Sep 2006 Posts: 1,357 Likes: 5 "OCF Canuck" Patient Advocate (1000+ posts) | | "OCF Canuck" Patient Advocate (1000+ posts)
Joined: Sep 2006 Posts: 1,357 Likes: 5 | Haven't seen you around for a couple of days Charm. Just wanted to let you know your presence and wisdom is missed. I hope you are maintaining your recovery schedule and we will hear from you when you feel up to it. Sending good vibes and prayers for quick healing your way.
Hugs
Donna
Donna,69, SCC L Tongue T2N1MO Stg IV 4/04 w/partial gloss;32 radtx; T2N2M0 Stg IV; R tongue-2nd partial gloss w/graft 10/07; 30 radtx/2 cispl 2/08. 3rd Oral Cancer surgery 1/22 - Stage 1. 2022 surgery eliminated swallowing and bottom left jaw. Now a “Tubie for Life”.no food envy - Thank God! Surviving isn't easy!!!! .Proudly Canadian - YES, UNIVERSAL HEALTH CARE IS WONDERFUL! (Not perfect but definitely WONDERFUL)
| | | | | Joined: Jan 2009 Posts: 1,844 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jan 2009 Posts: 1,844 | What Donna said. Love you brotha
Young Frack, SCC T4N2M0, Cisplatin,35+ rads,ND, RT Mandiblectomy w fibular free flap, facial paralysis, "He who has a "why" to live can bear with almost any "how"." -Nietzche "WARNING" PG-13 due to Sarcasm & WAY too much attitude, interact at your own risk.
| | | | | Joined: Oct 2011 Posts: 805 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Oct 2011 Posts: 805 |
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
| | | | | Joined: Dec 2010 Posts: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | | "OCF Canuck" Patient Advocate (old timer, 2000 posts)
Joined: Dec 2010 Posts: 5,260 Likes: 3 | THinking about you and hoping all is well.  hugs...
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: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | | OP Patient Advocate (old timer, 2000 posts)
Joined: Mar 2008 Posts: 3,082 | Today I got my two month checkup after radiation and the good news was that there is no visual sign of the third tumor. The mucositis has mostly healed, the thrush is gone, but now the mucous is really sticky. So much so that my ENT ordered a suction machine for me. I used one back in 2009 for eight months because of the volume of the mucous, but this time it's because the mucous is so sticky, like melted glue that even seltzer water doesn't faze it.
I'm hoping this will work as it's getting tiresome (literally) to be waking up multiple times in the night choking.
No scans until the three month mark, mid January, and my ENT agrees with me that a MRI is more accurate than a Petscan - no false positives just because normal mouth cells regenerating can suck up sugar as fast as a tumor.
Last edited by Charm2017; 12-11-2012 12:39 PM. Reason: typos
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
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