#20442 05-15-2006 10:36 AM | Joined: Sep 2003 Posts: 1,244 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Sep 2003 Posts: 1,244 | Hi Helen Welcome, but am sorry that it had to be so.. Most that I was going to post was covered by the previous posts. After I came home and the trachie was out someone came up with what I thought was an ideal supplement to the wipe board. They made up cards with phrases that you use a lot.. i.e: Yes, No, thanks, I need my inhaler. You get the idea? and because you don't have to keep writing I think it would work. Have you a laptop you could take with you? If so www.readplease.com is a free download of text to speech, easy to use. Didn't work for me as I had a graft to my arm and couldn't use the keyboard. When you have the trachie out try to remember to place gentle pressure on the dressing when you talk, or you will blow the hole open, as Aimee says they heal well with no intervention. With regard to your COPD have a good talk with the anesthetist, he should be able to put your mind at rest.. Anything else you think of please come back to us. 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
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#20443 05-15-2006 01:07 PM | Joined: Jun 2005 Posts: 9 Member | OP Member Joined: Jun 2005 Posts: 9 | Thank you so much for your kind responses. I'm still frightened but after reading this forum I can at least get the image of someone taking a piece of my tongue with a pair of pinking shears out of my too vivid imagination! Oh my, the thoughts that wander through my head. Aimee, it sounds like you've been through what I'm going to experience and you've definitely put my mine at ease. Thanks for the comfort and the good advice. Helen, I really like the idea of using flash cards to communicate. I'm sure that will help a lot. I'm making a note to myself about using gentle pressure on the trach dressing. Thanks for the tip. And the sunshine. Helen | | |
#20444 05-15-2006 03:14 PM | Joined: Apr 2005 Posts: 2,676 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Apr 2005 Posts: 2,676 | Helen, I have a question. Why are you getting a feeding tube thru your nose instead of a Peg tube? It swwms to me that Pegs are alot more "user friendly". 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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#20445 05-15-2006 03:37 PM | Joined: Jun 2005 Posts: 9 Member | OP Member Joined: Jun 2005 Posts: 9 | Amy, I was told that the post surgical swelling would prevent eating or breathing so I will have a temporary feeding tube through my nose and a trach. It's still unclear whether or not I will need radiation treatments but if I do, I will first have to have all my teeth out because I have really bad gums. I wonder, if it should become evident during the surgery that I will need radiation, could the surgeon go ahead and pull the teeth then? Maybe I should ask her. Seems like one big misery would be better than two. Helen | | |
#20446 05-16-2006 02:14 PM | Joined: Apr 2005 Posts: 2,676 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Apr 2005 Posts: 2,676 | Helen, John's teeth were removed during the 1st surgery ad his peg was inserted then too. It was a good plan because the pain meds in the hospital during recovery kept him pretty much pain free and by the time he came home, he did not need real strong medication. Be very clear about the questions you want answered by your surgeon, and insist on clear answers from her. 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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#20447 05-17-2006 12:19 PM | 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 | Helen,
I am really sorry to hear all you have experienced and the journey yet ahead for you. Keep asking your questions and you will find all the answers from people that have traveled the road in front of you. In won't be easy but it is well traveled.
I will certainly be praying for wisdom and guidance for your medical team and comfort and peace for you and your family through these difficult times.
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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#20448 05-17-2006 06:01 PM | Joined: Oct 2005 Posts: 126 Senior Member (100+ posts) | Senior Member (100+ posts) Joined: Oct 2005 Posts: 126 | Helen.
Welcome to OFC and sorry to have ou amongst us.
Regarding the neck dissection it seems to be standard procedure nowdays to do one. The dissection is done primarily to remove lymph nodes in the neck area. However there are different kinds of neck dissections which can remove the SCM muscles, the jagular )vein and spinal accessory nerve (SAN) along with the lymph nodes. The one that removes all is called the Radical Neck Dissection.
The other is called the Modified radical and this one primalrily spares the SAN nerve. Saving the nerve will eliminate the arm and shoulder problems caused when the nerve is removed. Although physical therapy can alleviate the arm and shoulder problems. Please discuss which neck dissection will be done with your Dr.
Best wishes on you surgery.
Vin
CG to wife; Jan 2005 DX SCC Tongue T2N1MO; RND surgery Mar 2005; 35 XRT and 4 cisplatin completed Jul 2005. Dec 2006 tongue surgery, Scar tissue no cancer. Feb 2010 neck node FNA - negative. 2010 ORN right jaw plus fracture 2015 ORN left jaw plus fracture Feb 2016 Lower jaw reconstruction by Fibula free flap+titanium plate - Permanent G-tube June 2016 Difficulty breathing - Permanent Trachea tube Dec 2019 DX Cervical cancer - Stage 1 - Surgery Jan 16 2020. 15-20 esophagus/larynx dilations
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#20449 05-20-2006 06:05 AM | Joined: Jun 2005 Posts: 9 Member | OP Member Joined: Jun 2005 Posts: 9 | I want to thank you all for your advice and your best wishes. Tomorrow we are driving to Shreveport where we (myself, my husband, and our daughter) will check into a hotel so we can relax a bit before the surgery Monday morning. I'm frightened but almost eager to get it done. At the same time, it's hard to even think about surgery because my mother died yesterday. And I'm disappointed and even angry that I will miss her funeral. But in my heart, I know she will be with me always.
So again, thank you and I will post again when I get out of the hospital.
Helen | | |
#20450 05-21-2006 06:03 AM | Joined: Apr 2005 Posts: 2,676 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Apr 2005 Posts: 2,676 | Best Luck with your surgery, Helen and condolences on the passing of your Mom. Glad to hear you have family with you in Shreveport. 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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#20451 05-21-2006 11:50 AM | Joined: Sep 2003 Posts: 1,244 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Sep 2003 Posts: 1,244 | Helen My Mom died 12 months after my surgery, but I know that Moms are very special and they put their kids first, so go get it done and your Mom will be with you every step of the way (remember always that special love between Mom and daughter) It's what get me through my current surgery. No it's not fair, but it is life... 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
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