#3900 09-29-2004 07:34 AM | Joined: Sep 2004 Posts: 15 Member | OP Member Joined: Sep 2004 Posts: 15 | The good news is: they got all of the tumor from his jaw, they managed to wean him off the vent, he healed well from his surgery, he fought off the aspiration pneumonia, and he's now in a nursing home less than a mile from his home.
The bad news is: 2 out of 32 lymph nodes were malignant and extracapsular; he has pre-cancerous tissue at the posterior base of his tongue, and the oncologist said no chemo - too sick for that, but wanted to do 7 weeks of radiation 5 times a week, which, not being a doctor, and not even playing one on t.v., I didn't see the point of since my dad is in end stage COPD, has a traech tube and a stomach feeding tube that he will most likely have for the rest of his life, but it was going to be my dad's decision once he got all the info (I just wanted the oncologist to give him a FAIR assessment and tell him what he was facing without radiation, and what he was facing as far as treatment WITH radiation)... the the head of the radiation department came in (last Thursday) and said NO... absolutely not. Can't have it, won't do it; no sense to it; Dad is in "very" end stage COPD and all the radiation would do (as I suspected) is put him through more pain and stress without being of any benefit. He was just transferred to the nursing home for palliative comfort care yesterday, and my mom said she had to tell THEM to plug the machine in and turn it on (not sure WHAT machine - he's in the nursing home because she is so stressed out she can't get things straight. Sounds like the blind leading the blind. I am scheduled to fly up to Chicago again a week from Saturday ...
So, I it's a question as to what will take his life first, the cancer or the COPD. His oncologist wanted to radiate because of the lymph nodes and the fact that the cancer producing agent that caused the tumor "contaminated" his entire mouth (hence the pre-cancerous condition at the base of the tongue). No one is saying how long for the "Very" end stage COPD to take it's toll. End stage COPD can go on for years, but I don't see that happening in this case. I just can't imagine not being able to drink, eat or talk. He can only talk with the talking valve, but his 02 blood level drops so quickly the last time he was on it he was only allowed 3 minutes, and it had been a over a week since he had had it at that time. My mom said she thought that was probably the last time he'd be able to talk ... The nurse said on some of the other times when he wanted to talk that if they put the valve in, he'd code and she refused to do it. No food, no drink, no talking ...
On the other hand, after reading what has been going on with Christy's grandma, I feel like we have a lot to be thankful for after all. | | |
#3901 09-29-2004 11:06 AM | Joined: May 2003 Posts: 928 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: May 2003 Posts: 928 | Sallie I am so sorry to hear your Dad is not doing so well, this is a very tough time for all of you. I wish I knew what to say to give you some comfort. Our thoughts are with you and your family. Take care 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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#3902 09-29-2004 01:32 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 | Sallie,
Thanks for the update on your Dad. I am really sorry that your family is going through such tough times. As Marica says, there are no words that can provide the comfort your family needs right now and I wish there was more that I could do to help you. Your family will be in my thoughts and prayers.
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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#3903 09-29-2004 02:17 PM | Joined: Feb 2004 Posts: 372 "Above & Beyond" Member (300+ posts) | "Above & Beyond" Member (300+ posts) Joined: Feb 2004 Posts: 372 | Hey Sallie, My thoughts and prayers are also with you and your family. Be with your dad as much as you can...he might not be able to eat, drink or talk, but he will know you are there. It is so hard to see someone you love suffer...may God give you strength as you need it and also strength for your dad to not feel pain. God bless, Debbie
Debbie - Caregiver for husband, Dan, diagnosed with tongue cancer 7/03. Partial gloss., mod. neck dissections, graft. Recurrence neck tumor 12/03. Radical left neck dissection 12/24/03-unable to get all the tumor. 8 weeks chemo/rad beginning 1/12/04.
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#3904 09-29-2004 09:43 PM | Joined: Aug 2003 Posts: 71 Supporting Member (50+ posts) | Supporting Member (50+ posts) Joined: Aug 2003 Posts: 71 | Sallie-
You are a true ANGEL. Your father is blessed to have such a caring family. I know it will be hard for you all but I'm sure just having you there makes it a little easier for your dad. Give your dad a kiss on the cheek from all of us here. You are all in my thoughts and prayers.
God Bless you all. 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.
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#3905 09-30-2004 02:36 PM | Joined: Aug 2004 Posts: 45 Contributing Member (25+ posts) | Contributing Member (25+ posts) Joined: Aug 2004 Posts: 45 | I am so sorry to hear the bad news about your Dad.....I know what you are going through, and my prayers are with you and your family.
God Bless you and your family.
Christy | | |
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