#26671 09-03-2004 11:42 AM | Joined: Dec 2003 Posts: 47 Contributing Member (25+ posts) | OP  Contributing Member (25+ posts)
Joined: Dec 2003 Posts: 47 | It's bad. I thought we were in Madison to get a better grip on Don's aspiration pnumonia because 1 1/2 weeks of Augmentin hasn't helped and we wanted to get back on with the swallowing therapy,well, Dr noticed a lump (we thought was scar)at the April 12th surgery site. They did an immediate needle aspiration and it's positive. Here goes that spinning out of control again...Now they moved the PET to next Wednesday and if that's positive below the neck, they have nothing left to offer except pallative chemo. If it's still local to the neck...PRAY HARD !!! He would need another surgery. At best. Dr isn't giving us any reason to be optomistic..the little blood he coughed up yesterday became gobbs of blood tinged fhlem today on the way home. Dr concerned that spot on lungs isn't pnumonia. That, his ear, and his voice.. my God I need something to hold too and theres NOTHING!!! He is going to check with Don's radiologist about any chances of IMPT at Loma Linda. Anything right now, anything. Thanks for being here.
Karen
Caretaker/Longtime Girlfriend of Don. Dx 10/31/03 SCC Stage IV T2N3bMO right tonsil/tongue base. 35 IMRT w/8 Chemos,Biopsy 4/5/4 STILL pos. Radical rightside 4/12/4 Reoccurred late August 04 God took his hand from me November 23rd, 2004
| | | 
#26672 09-03-2004 01:26 PM | Joined: Aug 2004 Posts: 217 Platinum Member (200+ posts) | | Platinum Member (200+ posts)
Joined: Aug 2004 Posts: 217 | We are praying, Karen. I will send you something in a private email.
Do not lose heart!
Nicki
Nicki, wife of Thomas
dx July 2004, SCC, Stage 4 Tonsil. Tx begun 8/4/04. Cisplatin/Xeloda x 4; IMRT 7 wks, 8/7 - 10/25/04 Modified Radical Dissection (right), Selective Dissection (Left) 12/10/04.
| | |
#26673 09-03-2004 02:30 PM | Joined: Oct 2002 Posts: 546 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Oct 2002 Posts: 546 | Karen,
I am so sorry. I was hoping so hard that I was wrong when it seemed like some of Don's symptoms were starting to mirror Heather's. I absolutely hate this #%*@#&* disease!!! I wish there was something positive I could say, but right now I am just overwhelmed with the unfairness of it all.
I truly hope there are no mets below the neck and the docs can get this under control.
Rosie
Was primary caregiver to my daughter Heather who had stage IV base of tongue SCC w/ primary recurrence. Original diagnosis August 21st, 2002. Primary recurrence March 18th, 2003. Died October 6th, 2003.
| | |
#26674 09-03-2004 02:39 PM | Joined: Dec 2003 Posts: 528 "OCF Down Under" "Above & Beyond" Member (500+ posts) | | "OCF Down Under" "Above & Beyond" Member (500+ posts)
Joined: Dec 2003 Posts: 528 | Dear Karen
I am so sad to see your news. It must be devastating for you and Don. I am thinking of you and sending love for your difficult week ahead.
Helen
RHTonsil SCC Stage IV tx completed May 03
| | |
#26675 09-03-2004 04:53 PM | Joined: Dec 2003 Posts: 116 Gold Member (100+ posts) | | Gold Member (100+ posts)
Joined: Dec 2003 Posts: 116 | I'm so sorry. This absolutely sucks.
My heart goes out to you both. I am sending healing thoughts your way and will be thinking of you in the days ahead. Hang on to each other with all you have; your combined strength and love will get you through each day.
Christine
Wife of Scott: SCC, Stage I retromolar 10/02--33 rad; recurrence 10/03--Docetaxol, 5FU, Cisplatin; 1/04 radical right neck, hard palate, right tonsil; recurrence 2/04--mets to skin and neck; Xeloda and palliative care 3/04-4/04; died 5/01/04.
| | |
#26676 09-03-2004 06:10 PM | Joined: Dec 2003 Posts: 207 Platinum Member (200+ posts) | | Platinum Member (200+ posts)
Joined: Dec 2003 Posts: 207 | Standing and praying with you Karen... We're here to lean on...
Tongue cancer (SCC), diagnosed Oct. 2003 (T2 N0 M0). Surgery to remove tumor. IMRT Radiation 30x in Dec 2003 - Jan. 2004. Recurrence lymph node - radical neck dissection June 2004. Second round of rad/chemo treatments ended Sept. 2004.
| | |
#26677 09-03-2004 08:51 PM | Joined: Sep 2003 Posts: 1,244 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Sep 2003 Posts: 1,244 | Karen
Try and and hang on in there, we are with you every step of the way, all my prayers to you both
love
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
| | |
#26678 09-03-2004 11:41 PM | Joined: Apr 2004 Posts: 146 Gold Member (100+ posts) | | Gold Member (100+ posts)
Joined: Apr 2004 Posts: 146 | Karen,
I'm devastated with Don's news and more than angry with this disease and what it does to us. I never thought I'd pray that someone could have surgery but in your case, I'm praying real hard that this will be an option. Please hold on to each other, your faith, and know that you can hold on to us here. We're here for you every step of the way and sending many, many prayers to you and Don.
Lots of Hugs, Nancy
Stage IV oral cancer (tongue), T3N2, total glossectomy with right and left modified neck dissection 7/03, rad /chemo ended 11/03
| | |
#26679 09-04-2004 12:29 AM | Joined: Aug 2003 Posts: 71 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Aug 2003 Posts: 71 | Karen-
You have all my thoughts and prayers. I feel like I just want to scream about the unjustice of it all. I try not to worry about my Don...also a tonsil cancer survivor...who went through treatment a couple months before your Don, exactly the same treatment. My Don will be sending healing vibes to your Don...one Don to another. Hang on tight to your love for each other...it will help you get through whatever each day may hold.
Lorie
Lorie/wife of Don, DX:8-7-03, Tonsil cancer left side stage III, IMRT x 35, 6 chemo (Cisplatin/Taxol), clear CT Scan 12-26-2003. Mets to both lungs & AML 11-6-05, mets to brain Jan 2006, mets to liver & bones April 2006, passed away July 20, 2006.
| | |
#26680 09-04-2004 02:06 AM | Joined: Jul 2003 Posts: 1,163 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jul 2003 Posts: 1,163 | Dear Karen,
I am so sorry you have to endure this battle with Don Again. Hang in there as best as you can.
I am praying that there is no met below the neck. I don't know what else to say.
God Bless, 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
| | |
#26681 09-05-2004 03:55 AM | Joined: Apr 2004 Posts: 156 Gold Member (100+ posts) | | Gold Member (100+ posts)
Joined: Apr 2004 Posts: 156 | Karen,
It is unfair for you and Don to endure this again. You're in my prayers.
Sabrina | | |
#26682 09-05-2004 08:01 AM | Joined: Dec 2003 Posts: 47 Contributing Member (25+ posts) | | OP Contributing Member (25+ posts)
Joined: Dec 2003 Posts: 47 | You are all so wonderful. We need and really appreciate all the prayers and know that you are all in mine. This board has done so much to help me keep my perspective. You each have your own losses, pain, and fears. You all know how I feel. Where else can I get that understanding. When I began to realize this @^%$%#@ disease had taken his ability to eat and drink, probably forever changing his social life, I was heartbroken. But I never imagined for a moment it would also take his beautiful voice. Johnny Cash? No, Donny Nash. For real. It's just so cruel. It was 8 days in the hospital that he was unable to talk. I longed to hear it again. When they finally put the new trach in, he suprised me by calling me on the phone! I was at home totally unexpecting. I'll never forget how I felt that day, and I know how good it made him feel. I had become a first time grama the night before and his first words to me were "Hi Grama!" To loose that voice forever is unimaginable to me right now and to loose him... beyond comprehention. Next Wednesday when we go for the PET, they are FINALLY going to address the depression issues. I don't know what took so long. Just keeping on top of the physical stuff I guess. Please keep him in your prayers. Thank you all sooo much for being here when I need to vent.
Karen
Caretaker/Longtime Girlfriend of Don. Dx 10/31/03 SCC Stage IV T2N3bMO right tonsil/tongue base. 35 IMRT w/8 Chemos,Biopsy 4/5/4 STILL pos. Radical rightside 4/12/4 Reoccurred late August 04 God took his hand from me November 23rd, 2004
| | |
#26683 09-05-2004 08:12 AM | Joined: Oct 2016 Posts: 284 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Oct 2016 Posts: 284 | Karen,
I will be praying for you both too. I'm so sorry for what you are going through.
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
| | |
#26684 09-07-2004 06:06 AM | Joined: Dec 2003 Posts: 2,606 Likes: 2 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Dec 2003 Posts: 2,606 Likes: 2 | Karen,
I am back now and I just wanted you and Don to know I have been thinking about both og you all weekend. I am praying for His intervention and divine guidance and widom for the medical team right now.
Ed
SCC Stage IV, BOT, T2N2bM0
Cisplatin/5FU x 3, 40 days radiation
Diagnosis 07/21/03 tx completed 10/08/03
Post Radiation Lower Motor Neuron Syndrome 3/08.
Cervical Spinal Stenosis 01/11
Cervical Myelitis 09/12
Thoracic Paraplegia 10/12
Dysautonomia 11/12
Hospice care 09/12-01/13.
COPD 01/14
Intermittent CHF 6/15
Feeding tube NPO 03/16
VFI 12/2016
ORN 12/2017
Cardiac Event 06/2018
Bilateral VFI 01/2021
Thoracotomy Bilobectomy 01/2022
Bilateral VFI 05/2022
Total Laryngectomy 01/2023
| | |
#26685 09-12-2004 10:24 AM | Joined: Aug 2004 Posts: 30 Contributing Member (25+ posts) | | Contributing Member (25+ posts)
Joined: Aug 2004 Posts: 30 | Karen,
I feel for you and Don! I can relate and understand what you are going through as my sister lost her voice in July from this horrible disease. I am praying for you both and that you have positive results with the Petscan.
God Bless,
Sister of Kim, a 24 year old cancer fighter diagnosed on 12/5/04, who fought strong and hard and died with dignity and honor on 1/3/05.
| | |
| Forums23 Topics18,168 Posts196,927 Members13,104 | | Most Online458
Jan 16th, 2020 | | |
|
