#37259 05-07-2004 05:38 AM | Joined: Apr 2004 Posts: 23 Member | OP  Member
Joined: Apr 2004 Posts: 23 | Thanks, Debbie. Rusty has had no surgery so far. He had 45 days radiation and three in-hospital 5 day stays for chemo. The problem now is the ENT stating, after the CT scan and biopsy following rad chem that there are no surgical options. I did ask the Oncologist about the Neurontin and he has prescribed it -- will pick up today and maybe this will help more. We are headed to Shands in Gainesville for a Monday appt and hope to have better options from that visit. Thank you all and I will check in next week with a report (and probably many more questions!) Bless you all with happiness and continued health. Millie | | |
#37260 05-07-2004 05:45 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 | Millie,
I wish there was something I could do to pep you up a bit. I can't dance, I can't sing anymore, I don't tell very good jokes...I just hope you have a g-r-r-r-r-r-e-a-t day today! I am sending love and kind thoughts your way and I hope Monday finds a miracle waiting for you and Rusty. You are both in my prayers daily.
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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#37261 05-10-2004 10:23 AM | Joined: Apr 2004 Posts: 482 "Above & Beyond" Member (300+ posts) | | "Above & Beyond" Member (300+ posts)
Joined: Apr 2004 Posts: 482 | Millie:I don't know what cancer center you're at, but I went to UMSylvester at Jackson Memorial which is recognized as one of the best in the country. My Doctor, Dr. Arnold, spent an extra 1.5 hours removing tissue from around my jugular and carotid arteries due to an unusually large muscle which was in the way. You might want to get a second opinion from him. His # is (305)243-4734 or speak with Lola Gelabert, his assistant. His only job is head and neck surgery. Regards, Kirk Georgia
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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#37262 05-10-2004 01:39 PM | Joined: Mar 2002 Posts: 4,912 Likes: 52 OCF Founder Patient Advocate (old timer, 2000 posts) | | OCF Founder Patient Advocate (old timer, 2000 posts)
Joined: Mar 2002 Posts: 4,912 Likes: 52 | Kirk...We have tried to make a policy of not giving out doctor's contact information publicly on the boards but rather encourage you to do this privately by email or private messaging through the board. I know that you are new and this is written anywhere, but sometimes the numbers posted create havoc for the doctors on the other end. I will leave this up for a day or so until you let me know that you have contacted Millie with the information.
Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.
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#37263 06-02-2004 12:55 AM | Joined: Apr 2004 Posts: 23 Member | | OP Member
Joined: Apr 2004 Posts: 23 | Hi, all. Well, has been a while since I posted. We went to Gainesville for Rusty's second opinion. Got the the hotel the night before the appt and he started coughing blood. Three surgeries and three weeks in ICU later and he's stabilized and back home. Apparently, arteries in his throat damaged by radiation and chemo burst and caused the extreme blood loss. Long story but the short of it is he's ok. Has a trach now to allow the throat better opportunity to heal from effects of rad/chem. Will probably stay in place at least 2 months and then we'll see how the throat looks. The good news is the 2nd opinion was much more positive than the 1st. Apparently, the cancer is under control from rad/chm and he is not terminal, as the first dr stated. He will continue to be watched and treated and I and everyone else will continue to pray that the cancer stays at bay. So, as we all well know, prayers are answered! I spent many hours in Gainesville on a kneeler (think my knee prints are permanently imbedded on one) but they certainly were answered. Thanks to all who have replied. We did get the lidocaine patches and fentanyl patches and they really help his ear pain, helping him to stay off the pain medication better. Now, time will tell. Get that throat healed and put some weight back on him. This week, for the first time in months, he has been interested in leaving the house and seeing the outside world. This is a big step as it shows some of the depression is lifting. He, as all of you have, has been through so much. I just got off the phone with a close friend with esophagus (sp?) cancer and she is trudging through the weakness and sickness, too. My prayers are with each and every one of you. Millie | | |
#37264 06-02-2004 06:24 AM | Joined: Apr 2004 Posts: 837 "Above & Beyond" Member (300+ posts) | | "Above & Beyond" Member (300+ posts)
Joined: Apr 2004 Posts: 837 | Millie,
It's great to hear that you have such good news, and that your husband is sensing some improvement. Sometimes it seems as though the recovery process is taking forever, but if he can gradually work some of the "normal" things back into his life, hopefully his spirits will continue to lift.
Hope you can get a bit of a breather also -- this is so hard for the caregivers as well.
Cathy
Tongue SCC (T2M0N0), poorly differentiated, diagnosed 3/89, partial glossectomy and neck dissection 4/89, radiation from early June to late August 1989
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#37265 06-02-2004 06:51 AM | Joined: Sep 2003 Posts: 1,244 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Sep 2003 Posts: 1,244 | Millie
Thanks for sharing your news.. you have obviously had a rough ride.. but so pleased that you can see some light at the end of the tunnel..
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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#37266 06-02-2004 10:48 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 | Millie,
I am glad God found where you needed to go! I am so sorry things got so intense for you for a while there but glad things are looking a bit more promising than when you first went in search of your second opinion. May God continue to bless you!
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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#37267 06-02-2004 11:02 AM | Joined: May 2003 Posts: 928 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: May 2003 Posts: 928 | Millie ..great news, is it not amazing what a couple of months and some great advice can do. Hang in, you have been a trooper during all this and remember, look after yourself too.
We caregivers can get burned out, exhausted and near to collapsing before we realise it.
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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#37268 08-11-2004 03:48 AM | Joined: Apr 2004 Posts: 23 Member | | OP Member
Joined: Apr 2004 Posts: 23 | Hi, all. Haven't checked in for a while. Miracles do happen, though, I want everyone to know! Rusty has been steadily getting back to normal. The news is still good; he just needs to put his weight back on. He had the trach removed in early July and another good ct report. He immediately began eating orally (first time since January) and has been eating constantly ever since! Of course, he has problems with certain foods but has been very fortunate in not losing much of his sense of taste. His brother sent him 24 pints of gourmet ice cream and he ate 21 pints in 7 days ... hmmm. Going for PEG tube removal TODAY !! We have been so very fortunate throughout all of this and, of course, it's not over, but we are seeing some good changes. Rusty had a tough week last week as he took himself off of the duragesic patch "cold turkey". Was a tough week for him but he's through it now. Is down to medium-level doses of pain medication an is working with a pain mgt doctor on ear pain. Making slight progress there. The real miracle is that he's singing! I don't know if I mentioned it in earlier posts but he is a singer by trade so this was especially frightening to him, with the chance of losing his voice. He has been back to work over the past few weeks. Doesn't sing as many songs but is playing and singing about 1/3 as many. We had a huge welcome back party for him last Saturday and his fans and friends just made it so special. God looks after us all and has certainly been watching over us these past months. Thank you all for your support and I will check back in as time goes on. I keep a list of folks from these forums to pray for and hope that my prayers are answered each day. Mother Theresa once said (probably not the exact quote here ..) God only gives us what we can handle; I just wish He didn't trust me so much. Millie | | |
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