#3790 09-23-2004 02:44 AM | Joined: Dec 2003 Posts: 2,606 Likes: 2 Patient Advocate (old timer, 2000 posts) | OP  Patient Advocate (old timer, 2000 posts)
Joined: Dec 2003 Posts: 2,606 Likes: 2 | I got the following from Jeepster today. Things have taken a turn for the worse for Don and her. Please keep them in your prayers.
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Hi Ed, Sorry I haven't had much (NO) chance to get to the board. I want to, but it's hard. Time is only one problem. We have no good news...feel free to fill everyone there in since I really only want to type this once right now and I have to try and keep it short so I can get back to Don. I think the last you knew we were told he had a reoccurance in his neck (confirmed) and we got the PET moved up to the following Wednesday (one week ago)to see if it had spread below the neck. PET scan showed reoccorance at old surgury site, AND the OTHER side of his neck has an "unoperable" large tumor with unclear margins than goes from his throat, up to the inside of his ear and around to his spine and is "imobile" If that wasn't enough of a statement of "it's" evil intentions, it also showed up in his chest wall. It doesn't look good..at all. We're still fighting though. His voice is gone now completely...forever. I can't begin to describe how that feels. He had to have the trach put back in because the cancer in his head is closing the airway and ALL secretions head straight south uninhibited to his lungs.. So no suprise that after the 4 days back in the hospital to get the trach back, the next day we're at ER with bacterial pnumonia! How? He was on Augmenton for 4 weeks! Now oxygen 24 X 7. We were at Dr for trach checkup today. He's not suprised at all that he has PN.He was on Augmenton to DELAY the onset. Dr STRESSED "Contact Hospice" Somehow what Dr said last week about "less than a year" is much more imminent (in his eyes)now. But like I said, were not done. Looking for more optomistic opinions and options... have records ready to send. Any suggestions...anywhere. Plus CAM. And Prayers
Thanks Ed for writing and propting me I want people to know, just haven't had time.. You understand. I wish the best of health for you and everyone on the board please pass this on. I'll be back when I have a little time and feel a little stronger.. I don't want to bring everyone totally down.
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
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#3791 09-23-2004 10:02 AM | Joined: Apr 2004 Posts: 482 "Above & Beyond" Member (300+ posts) | | "Above & Beyond" Member (300+ posts)
Joined: Apr 2004 Posts: 482 | Ed, Please pass on that I will be praying for them both. Know that the Lord will lead them to His grace according to His plan for them. I pray their journey is positive.
Regards, Kirk Georgia
Stage IV, T1N2aM0, right tonsil primary, Tonsilectomy 11/03, 35 rad/3cisplatin chemo, right neck dissection 1/04 - 5/04.
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#3792 09-23-2004 10:50 AM | Joined: Jul 2003 Posts: 382 Likes: 3 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Jul 2003 Posts: 382 Likes: 3 | Ed-
More prayers headed Jeepsters way! I know it is hard to post when you are in shock and hope seems dismal at best. But please remind her that we are all in this journey together, no matter what the outcome. Many of us will take that walk in their shoes and although we don't want to intrude, we all have questions about what that walk will be like. The disease sucks, we don't want to know, but then we want to prepare ourselves for other outcomes. I still believe in miracles! Pass on my love -- Kris
SCC Stage IV left tonsil neck disection 3/02 radiation finished 6/02 chemo finished 9/02
Stage 2A left breast cancer 3/09, chemo and radiation, finished treatment 2/7/10 -Stage 2 right beast cancer 10/14 chemo and radiation
Every day is still a gift :-)
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#3793 09-23-2004 10:51 AM | Joined: Feb 2004 Posts: 218 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Feb 2004 Posts: 218 | Ed,
Please tell them that they will be in my thoughts and prayers. You might suggest that they ask their doctor about any possible clinical trials that could offer some hope. - Sheldon
Dx 1/29/04, SCC, T2N0M0
Tx 2/12/04 Surgery, 4/15/04 66 Gy. radiation (36 sessions)
Dx 3/15/2016, SCC, pT1NX
Tx 3/29/16 Surgery
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#3794 09-23-2004 11:54 AM | Joined: Feb 2004 Posts: 162 Gold Member (100+ posts) | | Gold Member (100+ posts)
Joined: Feb 2004 Posts: 162 | Please pass on my very best wishes...
-Brett
Base of Tongue SCC. Stage IV, T1N2bM0. Diagnosed 25 July 2003.
Treated with 6 weeks induction chemo -- Taxol & Carboplatin once a week followed with 30 fractions IMRT, 10 fields per fraction over 6 more weeks. Recurrence October 2005.
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#3795 09-23-2004 05:57 PM | Joined: Apr 2002 Posts: 73 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Apr 2002 Posts: 73 | Please send my prayers as well and let them know there are the thoughts and prayers of many more people than they will ever know.
ilene
ilene
SCC stage 1 1987, 1/4 of tongue removed, neck dissection, SCC stage 3 2000, another 1/4+ removed second neck dissection, radiation.
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#3796 10-05-2004 02:02 PM | Joined: Mar 2003 Posts: 64 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Mar 2003 Posts: 64 | It turns out that Karen and Don live only 30 some miles from Jack and me. I have talked to her on the phone several times and she has my numbers if she needs someone to talk to. It turns out that Don and Jack were in rooms across from each other after their surgery. What a coincidence. I didn't meet them. Jack kept chewing me out for bothering people so I tried just staying in his room.
I hope I can be some help if she needs someone to talk to that is experiencing similar things.
Lowanne | | |
#3797 10-05-2004 03:20 PM | Joined: Jul 2003 Posts: 1,163 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jul 2003 Posts: 1,163 | Hello Jeepster,
Sorry to hear of all thats going on with Don. My prayers go out to both of you. I was DX about the same time as Don and ended treatment about the same time. We all may one day be faced with what Don is facing. Please know that there are so many members who will read Ed's posting and be thinking of both of you and praying that somehow you can find that miricle that turns things around. If that can't be found I hope this part of Don's journey is peacefull and pain free.
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
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#3798 10-06-2004 05:28 AM | Joined: May 2003 Posts: 928 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: May 2003 Posts: 928 | Dear Jeepster
Bless all of you....I hate to see posts like this. I just dont know what to say, what can possibly make this family feel better.
May Your God Go with You.
Marica
Caregiver to husband Pete, Dx 4/03 SCC Base of Tongue Stage IV. Chemo /Rad no surgery. Treatment finished 8/03. Doing great!
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#3799 10-06-2004 06:30 AM | Joined: Sep 2003 Posts: 1,244 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Sep 2003 Posts: 1,244 | Dear Jeepster
Some parts of this journey have to be walked alone, but remember that every step that you take one of us is there by your side.
Prayers... 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
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