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#46481 02-01-2006 03:00 PM
Joined: Apr 2005
Posts: 2,676
JAM
Patient Advocate (old timer, 2000 posts)
Patient Advocate (old timer, 2000 posts)

Joined: Apr 2005
Posts: 2,676
We are almost "currently in treatment"- well I'm not sure we were out of the last treatment yet- but John's new surgery is scheduled for Feb. 9-7:30 am. Told to expect 8 hrs.in the OR. Had a good talk with both surgeons today. Here's what I heard them say. DR.S [whom we been seeing all along} thinks this 2nd surgery has a good chance-along with chemo- of getting rid of the cancer. He never used the word "palliative" treatment. They have decided to use a titanium plate to replace portion of jaw removed and skin and vessels from right arm to cover that, and remove more lymph nodes for testing. They are going to keep him in SIC in a "sleeping state" for 48 hrs.to be sure he doesn't move around. Dr.S
told me to go somewhere and rest
during that period because I would be of no use in the hospital. Also, Dr.S will not move him to a floor on a weekend, so we won't be in a room until Monday 13th. We were told to plan a stay of 14 days in hospital, then up to 4 weeks recovery at home before starting chemo. Dr. S and Dr. M[the reconstructive surgeon] both told John that this would be pretty tough as the last surgery was less that 10 mo. ago, so there has already been trauma plus the radiation trauma to his mouth and neck. I didn't ask today what the chemo drugs would be, but I will because I want to post them here and get any advice on how to deal with this at home. I gave Dr.S a print-out of Brian's post on "accepted protocols" for the combination of surgery, rad. and chemo combined and an interesting discussion insued. He offered to try to get us to a consult at MD Anderson, but said that he doubted we would hear anything different proposed and time was pretty important at this juncture. So, here we are. Thank you all for your prayers and good wishes. Amy


CGtoJohn:SCC Flr of Mouth.Dx 3\05. Surg.4\05.T3NOMO.IMRTx30. Recur Dx 1\06.Surg 2\06. Chemo: 4 Cycles of Carbo\Taxol:on Erbitux for 7 mo. Lost our battle 2-23-07- But not the will to fight this disease

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#46482 02-01-2006 03:49 PM
Joined: Apr 2004
Posts: 837
"Above & Beyond" Member (300+ posts)
"Above & Beyond" Member (300+ posts)

Joined: Apr 2004
Posts: 837
Amy,

I know this has been such a long haul for you and John -- I hope and pray that this time his doctors can really nail this once and for all. Please try to take care of yourself too, and get some rest whenever you can.

Cathy


Tongue SCC (T2M0N0), poorly differentiated, diagnosed 3/89, partial glossectomy and neck dissection 4/89, radiation from early June to late August 1989
#46483 02-01-2006 04:34 PM
Joined: Jul 2003
Posts: 1,163
Patient Advocate (1000+ posts)
Patient Advocate (1000+ posts)

Joined: Jul 2003
Posts: 1,163
Hello Amy,

May you have the strength to get through this rough part of this "Bastard of a Diaease"
Please know that I and many members will be pulling for him and hopefully this nightmare will end. It's going to be a rough road ahead, please keep posting so we can offer support and love. Please remember to vent here anytime. We want to help in any way we can.

Love Ya, Danny Boy


Daniel Bogan DX 7/16/03 Right tonsil,SCC T4NOMO. right side neck disection, IMRT Radiation x 33.

Recurrance in June 05 in right tonsil area. Now receiving palliative chemo (Erbitux) starting 3/9/06

Our good friend and loved member of the forum has passed away RIP Dannyboy 7-16-2006
#46484 02-02-2006 03:10 AM
Joined: Mar 2004
Posts: 417
"Above & Beyond" Member (300+ posts)
"Above & Beyond" Member (300+ posts)

Joined: Mar 2004
Posts: 417
Amy: You, your family and especially John will continue to be in our thoughts and prayers.
Darrell


Stage 3, T3,N1,M0,SCC, Base of Tongue. No Surgery, Radiationx39, Chemo, Taxol & Carboplatin Weekly 8 Treatments 2004. Age 60. Recurrence 2/06, SCC, Chest & Neck (Sub clavean), Remission 8/06. Recurrence SCC 12/10/06 Chest.
#46485 02-02-2006 03:17 AM
Joined: Feb 2005
Posts: 2,019
Patient Advocate (old timer, 2000 posts)
Patient Advocate (old timer, 2000 posts)

Joined: Feb 2005
Posts: 2,019
Amy, You are both in my thoughts. Feb. 9th is the one year anniversary of my neck dissection and partial glossectomy and on that day I will be sending all my thoughts and prayers your way. It sounds hopeful that even though this sounds like a really tough surgery they may be able to really stop this disease for good! As Cathy said, don't forget to take care of yourself through all this. You have too many folks who need you to let yourself get run down.

Please let us know when you get a chance how things went. There are lots of people here rooting for you and John.

Nelie


SCC(T2N0M0) part.glossectomy & neck dissect 2/9/05 & 2/25/05.33 IMRT(66 Gy),2 Cisplatin ended 06/03/05.Stage I breast cancer treated 2/05-11/05.Surgery to remove esophageal stricture 07/06, still having dilatations to keep esophagus open.Dysphagia. "When you're going through hell, keep going"
#46486 02-02-2006 06:26 AM
Joined: Sep 2003
Posts: 1,244
Patient Advocate (1000+ posts)
Patient Advocate (1000+ posts)

Joined: Sep 2003
Posts: 1,244
Amy
Well done, you have asked all the questions, and have become John advocate for his treatment. There is nothing more you can do at this moment, so try to make sometime for you, get your batteries fully charged for the fight ahead.
May your God walk with you
Sunshine... love and hugs
Helen


SCC Base of tongue, (TISN0M0) laser surgery, 10/01 and 05/03 no clear margins. Radial free flap graft to tonsil pillar, partial glossectomy, left neck dissection 08/04
#46487 02-02-2006 07:37 AM
Joined: May 2002
Posts: 2,152
Patient Advocate (old timer, 2000 posts)
Patient Advocate (old timer, 2000 posts)

Joined: May 2002
Posts: 2,152
Amy,
Is John left handed? If not, I'm suprised they will use skin and arteries from right arm. While I got lucky and didn't need to have them removed, they wanted to make certain they took them from the opposite side.

You both will be in my thoughts and it sounds like they will kill 'this beast' this time.

Take care,
Eileen


----------------------
Aug 1997 unknown primary, Stage III
mets to 1 lymph node in neck; rt ND, 36 XRT rad
Aug 2001 tiny tumor on larynx, Stage I total laryngectomy; left ND
June 5, 2010 dx early stage breast cancer
June 9, 2011 SCC 1.5 cm hypo pharynx, 70% P-16 positive, no mets, Stage I
#46488 02-02-2006 02:01 PM
Joined: Nov 2005
Posts: 79
Senior Member (75+ posts)
Senior Member (75+ posts)

Joined: Nov 2005
Posts: 79
Amy - that is one tough treatment to come, especially given all John and you have been through to-date.

Glad the doctor encouraged you to rest while John is in early recovery. You probably will have lots to do once he's at home for the 4 weeks and the chemo to follow.

It takes so much love and strength to get through all this. Lots and lots of good, strong positive energy sent over the airwaves to you and John and your family.

Love
Mary


Caregiver for John SCC left tonsil Stage III/IV dx Sept 05, tx started Oct 21/05 -IMRT 35, cisplatin 3 X 100mg/m2;completed Dec08/05.
#46489 02-02-2006 03:30 PM
Joined: Oct 2016
Posts: 284
Gold Member (200+ posts)
Gold Member (200+ posts)

Joined: Oct 2016
Posts: 284
Amy & John,

I will be thinking of you both and sending many prayers and hugs your way on the 9th. My mom had to endure 2 major surgeries pretty close together and it was tough but he can do it....

Hugs,
Dani


Originally joined OCF on 12/12/03 as DaniO or Danijams
Dani-Mom SCC BOT & floor of mouth surgery-recur then surgery/rads & chemo completed 3/04
surgery 11/06 to remove dead bone & replace jaw w/ leg bone & titanium plate
#46490 02-02-2006 03:52 PM
Joined: Aug 2003
Posts: 1,627
Patient Advocate (1000+ posts)
Patient Advocate (1000+ posts)

Joined: Aug 2003
Posts: 1,627
Hi Amy,
Did they say why the are not using the bone from his leg? I have read alot on this procedure and it provides the best overall outcome as far as function, etc. Just wondering.
Sounds like you have all else covered, great job. I was kept in a sleep state as they will keep John and recall being VERY disoriented for at long time when I finally was allowed to come awake. My head was not kept in the proper position by the nurses on the day I "woke up" and my face became so swollen I was unrecognizable. My older girls still struggle to talk about it. I recall my first few moments of coming awake and trying so hard to see. I couldn't because my eyes were swollen shut and I thought I was blind. I was only awake for maybe 2-3 minutes and when I came awake again my swelling had reduced and my sight was ok. Just something else I remembered.
Minnie


SCC Left Mandible. Jaw replaced with bone from leg. Neck disection, 37 radiation treatments. Recurrence 8-28-07, stage 2, tongue. One third of tongue removed 10-4-07. 5-23-08 chemo started for tumor behind swallowing passage, Our good friend and much loved OCF member Minnie has been lost to the disease (RIP 10-29-08). We will all miss her greatly.
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