| | Joined: May 2007 Posts: 132 "OCF Down Under" Senior Member (100+ posts) |  "OCF Down Under" Senior Member (100+ posts)
Joined: May 2007 Posts: 132 | Hi Charm,
I am so sorry that you and Bev have to go through this again. I thought that something that might give you both cause for optimism is that after my second round of IMRT in 2010 I was cancer free for about 10 months and then was diagnosed with SCC in the left buccal area. It appeared to be localized and I had two surgeries to remove the suspect area. (I had cancer on one of the margins of the first surgery, hence the second op). All seemed good with this until my checkup when it appeared to be back. A biopsy confirmed it and a decision was made to do a wide area excision and replace it with a forearm free flap. This was done in February of 2011 and I have not had a problem since. I still run to my ENT everytime something concerns me. He had once told me that I should do the things I wanted to do do sooner rather than later but now he says that while my prognosis has to be somewhat guarded given the recurrent nature of my disease, I can now plan for the longer term. I am proof that a recurrence after being radiated twice is not a death sentence.
Tell Bev to be optimistic a day spent worrying about what might happen is a day wasted. If your disease is localized it is likely no radiation will be necessary, and surgery may completely removed.
Think positively!! Completely off topic I bought a Vitamix and am happily putting blended whole foods down my PEG. Thanks for that info. I will get a button next month.
Love and Best Wishes to you and Bev.
Sue G
55 y/o
SCC LL Tongue 3/27/07
Part. mandibulectomy 9/2/07
Left ND 5/12/08
RT/Chemo
Rec LL Tongue 07/09
Part gloss 8/5 & 8/25
Surg 10/28/09 re mets to R neck & L jaw
RT & Chemo finished 12/22/09
PEG fitted 05/06/10
L buccal SCC 10/10
freeflap (forearm)surgery 2/28/11 L buccal and gingiva
| | | | | Joined: Jan 2011 Posts: 123 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Jan 2011 Posts: 123 | I am so sorry to hear this. You are such an inspiration and I am in awe of your strength and positivity! I feel for you and your wife - being a caregiver is hard, I know. But together you will both get through this!
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: Apr 2012 Posts: 111 "OCF across the pond" Senior Member (100+ posts) | | "OCF across the pond" Senior Member (100+ posts)
Joined: Apr 2012 Posts: 111 | Hi Charm, I too have been benefiting greatly form your very valuable knowledge, especially with reguard to diet. You are a great inspiration to me. Your humour makes this forum seem very real rather than virtual. It seems so wrong that you should be dealing with this again. I hope we newbies at dealing with this horrrible cancer can help to give you back some of the support you have given us.
Best wishes, Sally
Dx 10/11 51yrs LBOT Stage 4 2nodes HPV16+. Non-smoker mod alcohol.
10/11 Induction chemox2 (Docetaxel, 5-Flu, Cisplatin) then Cisplatinx2 IMRTx30. Ended 01/13/12.
12/07/11 RIG. RIG removed 05/05/12.
4/12 CT scan clear. Visual scope checks clear as of 10/13. Learning to live with eating challenges.
| | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | Charm I have never felt this bad for anyone. Having met you online a few times and kidding with you made you a specil and intelligent person.If you had to you would look up the topic and give advice. This I appreciate very much. You have had me smiling and sometimes in teras. Man I pray that you will be fine and with us for another 40 yrs or more even if I won't be. The best of wishes to you and your wife for now and ever.This was a big shock of reallity for all the members of OFC.--- Ole typo Jim
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
| | | | | 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 | Okay - here I am waiting for the update. I know you had an appointment this morning, have calculated out how long approximately you would take to get home and digest/assess the info, so I am looking forward to hearing an update as soon as you feel ready to post one!
Many Hugs
Donna
P.S. I purposely didn't check OCF until after 12pm because my daughter believes even numbers are lucky and odd ones unlucky. Somehow this logical civil engineer has infected me with this bizarre superstition with even/odd! Go Figure.
Last edited by Pandora99; 08-28-2012 09:24 AM. Reason: typos!!
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: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | | OP Patient Advocate (old timer, 2000 posts)
Joined: Mar 2008 Posts: 3,082 | sorry for the delay in posting the update, but after my doctor's appointment, I had to drive the MRI scans and reports over to Georgetown CCC so my RO would have time to review them before my appointment tomorrow late afternoon. Then it was time to take my pain pills that I didn't this morning because I wanted to be clear headed. GOOD NEWS: It looks like I'll get to keep my tongue and voicebox. the pain in my tongue is just referred pain from the tumor pressing on a nerve. Complication: The tumor location in the left lateral wall/tonsil fossa makes surgery "highly problematic". That leaves only radiation & chemo. So tomorrow, my RO will schedule a Petscan and then see if I can do a third round of radiation (I just found an obscure article saying 133 GY total is doable and I've only had 97GY) I'm scheduled to "discuss" with my MO an NIH clinical trial for chemo that Brian Hill turned me onto which my surgeon thought would be just the ticket. Not clear yet on the mechanics of getting in but I do meet all the criteria. Now you all know what I know. Oh, bonus news, today's Wall Street Journal had an article listing all the medications that can mimic the effects of Alzheimer's disease re memory etc and I've been on two of them daily: Lipitor & Robinul. That explains why I can wake up and think: Huh, is my cancer really back?  Keep the Faith 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: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 10,507 Likes: 7 | Sounds like you have some promising news with your latest update. Thats very good to hear!!! What about brachytherapy? Is that an option? Would it be helpful at all?
ChristineSCC 6/15/07 L chk & by L molar both Stag I, age44 2x cispltn-35 IMRT end 9/27/07 -65 lbs in 2 mo, no caregvr Clear PET 1/08 4/4/08 recur L chk Stag I surg 4/16/08 clr marg 215 HBO dives 3/09 teeth out, trismus 7/2/09 recur, Stg IV 8/24/09 trach, ND, mandiblctmy 3wks medicly inducd coma 2 mo xtended hospital stay, ICU & burn unit PICC line IV antibx 8 mo 10/4/10, 2/14/11 reconst surg OC 3x in 3 years very happy to be alive  | | | | | 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 | Christine
I will check with my RO but my impression is that those radioactive seeds did not do very well for my tumor location. Too many complications with the carotid arteries & nerve damage from some studies I've read. Dr Google is somewhat depressing as he keeps pulling up excerpts like this
[quote]Tonsillar fossa cancer presents a clinical treatment
dilemma, as there are neither prospective randomized
trials nor site-specific retrospective analyses that clearly
indicate a superior approach to this locally and regionally
aggressive disease[/quote]
Still it never hurts to ask and he would know.. He's pretty sharp. Thanks for reminding me not to dismiss anything,
Charm
Last edited by Charm2017; 08-28-2012 10:30 AM. Reason: added quote
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: May 2010 Posts: 638 "OCF Down Under" "Above & Beyond" Member (500+ posts) | | "OCF Down Under" "Above & Beyond" Member (500+ posts)
Joined: May 2010 Posts: 638 | [quote]Oh, bonus news, today's Wall Street Journal had an article listing all the medications that can mimic the effects of Alzheimer's disease re memory etc and I've been on two of them daily: Lipitor & Robinul. That explains why I can wake up and think: Huh, is my cancer really back? [/quote] Take double doses and maybe you will wake up with "what's cancer?"
Karen Love of Life to Alex T4N2M0 SCC Tonsil, BOT, R lymph nodes Dx March 2010 51yrs. Unresectable. HPV+ve Tx Chemo x 3+1 cycles(cisplatin,docetaxel,5FU)- complete May 31 Chemoradiation (IMRTx35 + weekly cisplatin) Finish Aug 27 Return to work 2 years on 3 years out Aug 27 2013 NED Still underweight
| | | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | | Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 | Charm,
What about IMPT for that "highly problematic" area?
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
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