#54921 05-21-2004 09:34 AM | Joined: Jul 2003 Posts: 1,163 Patient Advocate (1000+ posts) | OP  Patient Advocate (1000+ posts)
Joined: Jul 2003 Posts: 1,163 | Hello All,
Just got off the phone with my ENT. Told me that additional surgery and more radiation is not a viable option in my case. He suggested I see a medical on'gist for a possible agressive form of chemo treatment. He didn't think it could be cured by it but it would (may) prolong my life.
The report states "in the right pharyngeal mucosal space, involving the lower nasopharynx and superior oropharynx, there is increased soft tissue that has a maximal SUV of 9.36. Maximal SUV in this area before was not as impressive.
There is also increased activity now involving the soft palate with maximal SUV of 7.57. This is actually more impressive on the left than on the right. Metabolic activity in this area has also increased. In addition, there is some increased activity now seen at the left floor of the mouth which has significantly increased from before. This appears to be in the region of the geniohyoid muscle and sublingual space. There is no definate mass in this area, but again metabolic activity has markedely increased from before.
It goes on to talk about multiple pulmonary nodules shown now. The findings are very worrisome for recurrent neoplasam. in addition there is also increased metabolic activity involving the soft palate now compared to before,
which is of concern as regards possible neoplasam.
I will be seeing a Medical On'gist as soon as possible and after input from her and my family I will make a decision as to what path I will follow.
I wanted to Thank everyone who has responded to my posts and gave me support and information. I can't express how much this forum and it's members have meant to me. Only someone going thru it or a caregiver would no.
Your Friend, 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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#54922 05-21-2004 09:39 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 | Dan,
I am totally speechless and staring at this box through tear flowing eyes. I am so sorry of the news and the terrible waiting game you are experiencing. We were diagnosed just days if not hours apart (7/18 for me). I wish I knew what to say to encourage you to keep fighting; I wish there was a way I could immediately comfort you; I wish I could cure this dreaded disease; I wish there was something I could say to inspire you. You have been my beacon, my source of energy. I will pray extra hard for you and I will have everybody I know praying for you. Please hold on to your faith right now. I love you, bro!
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
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#54923 05-21-2004 09:55 AM | Joined: Sep 2003 Posts: 1,244 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Sep 2003 Posts: 1,244 | Right Danny Boy
You have this weekend to sort this.. is unaceptable to wait this long.. so come on get your head round this.. Monday Morning do something .... plead.. beg.. pay.. what ever.. come on you are not in sales for nothing.. get this appointment moved..I couldn't wait that long so I'm sure you can't..
come on danny boy
love ya
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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#54924 05-21-2004 10:38 AM | | Anonymous Unregistered | | Anonymous Unregistered
| Danny,
There are many of us out here who are saying "Oh S**t" But it may be easier to just say my heart bleeds for you. The unknown is scary and until you can wrap your head around this and see the oncologist there isn't much anyone can do to help.
Except to say we are with you.
I have sent you a private email about an hour ago.
Please know it's not too hot in San Antonio right now. And I have a spare bedroom.
Dinah | | |
#54925 05-21-2004 12:35 PM | Joined: May 2003 Posts: 928 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: May 2003 Posts: 928 | Dan, I don`t quite know what to say to you except the old adage of "it aint over till its over".
If there was just something we could DO!
Please keep the faith and 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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#54926 05-21-2004 12:37 PM | Joined: Nov 2002 Posts: 3,552 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Nov 2002 Posts: 3,552 | Say it isn't so Danny Boy! There's been enough bad news around here this week. It's making me real nervous.
Think "false positive"!
I'll pray for you...
Gary Allsebrook
***********************************
Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2
Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy)
________________________________________________________
"You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
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#54927 05-21-2004 12:51 PM | Joined: Jan 2003 Posts: 95 Senior Member (75+ posts) | | Senior Member (75+ posts)
Joined: Jan 2003 Posts: 95 | Dan,
My prayers are with you too. Don,t give up.You are never alone here.
Diane | | |
#54928 05-21-2004 02:24 PM | Joined: Sep 2003 Posts: 139 Gold Member (100+ posts) | | Gold Member (100+ posts)
Joined: Sep 2003 Posts: 139 | Ah, Danny........I don't know what to say. SH** seems most appropriate right now as I am in shock over this too. And like Ed, the tears are flowing. OK.......God leads you to it, He will lead you through it. We KNOW this....let us give it credence.
Love you, God bless you and prayers are flooding heaven,
Judy U
Warm in Vegas too if you want to come early! Extra rooms!
Judy U
Stage I SCC floor of mouth, left radical neck dissection 8/03
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#54929 05-21-2004 02:35 PM | Joined: Jul 2003 Posts: 1,163 Patient Advocate (1000+ posts) | | OP Patient Advocate (1000+ posts)
Joined: Jul 2003 Posts: 1,163 | Thank You all sending me emails and for responding to my post. It means more to me than I can express. I plan on spending time with my family and won't make any decisions on treatment until I see the medical on'gist June 1st & my ENT June 2nd. I will keep this forum posted after that.
Thanks again, Dan
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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#54930 05-21-2004 02:41 PM | Joined: Aug 2003 Posts: 1,627 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Aug 2003 Posts: 1,627 | Danny,
Geez, I don't know what to say. I wish I was closer so that I could be of some help.
Love,
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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