| 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 | Are those new changes Paul? Getting real tired from seemingly easy tasks that I had done for years was the early onset of some of my issues. Using the hedge trimmer would almost bring me to my knees gasping for breath, sweating and the heart beat pounding in my ears.
Thanks.
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
| | | | Joined: Jul 2012 Posts: 3,267 Likes: 4 Patient Advocate (old timer, 2000 posts) | OP Patient Advocate (old timer, 2000 posts) Joined: Jul 2012 Posts: 3,267 Likes: 4 | I felt good getting out of the house, seeing the sights, people, and ate some clam chowder in Au Bon Pain, a commercial eatery in the hospital, and then saw the social worker. He said getting transportation to NJ, interstate, will be difficult. Obtained some of my records, and then onto the SPOHNC meeting. The facilitator, a SLP, is going to have a swallow study done on me.
Onto getting home. My pick up with access-a-ride was at 5PM. It did not arrive until 6:15PM, and got home after 7PM. I don't know how I'm going to do it during Treatment.
Ed, this isn't really new. I've been like this for 4 years after my chemo in 2009. In fact, I was worse, got a little better, , but depending on any co-conditions like anemia, kidneys, diabetes, neuropathy, dehydration effecting me, and then after each radiation, surgery, chemo, I'm back to where I started. I only go out to see the doctors basically, and use my walker to sit on to cook, which I havent done in a while, have a shower chair, and have everything delivered, food, laundry, prescriptions, and a cleaning woman once a month to conserve energy. I did have a good run going to the gym in the spring a few days a week, which required special supplementation from my doctor, but after the kidney failure in May, recurrence in August, I haven't been there since, and I used to go to the gym sometime 5, 6 days a week since I was 15, depending on my routine, and running, swimming, biking, etc.
10/09 T1N2bM0 Tonsil 11/09 Taxo Cisp 5-FU, 6 Months Hosp 01/11 35 IMRT 70Gy 7 Wks 06/11 30 HBO 08/11 RND PNI 06/12 SND PNI LVI 08/12 RND Pec Flap IORT 12 Gy 10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux 10/13 SND 10/13 TBO/Angiograph 10/13 RND Carotid Remove IORT 10Gy PNI 12/13 25 Protons 50Gy 6 Wks Carbo 11/14 All Teeth Extract 30 HBO 03/15 Sequestromy Buccal Flap ORN 09/16 Mandibulectomy Fib Flap Sternotomy 04/17 Regraft hypergranulation Donor Site 06/17 Heart Attack Stent 02/19 Finally Cancer Free Took 10 yrs
| | | | 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 | Crazy how the vagus nerve regulates or transmits information for about everything you mention. Almost makes me wonder if it was damaged previously or had cancerous cells growing some all the time and impeding signals. I really believe many long term issues are vagus nerve related except peripheral neuropathies. Almost all of those are related to the brachial plexus nerve bundle. It gets bound up from scar tissue, edema and fibrosis and signals are interrupted to arms/legs.
Rest up, eat regular calories and have a great weekend as you prepare to lay out your plan next week.
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
| | | | Joined: Jul 2012 Posts: 3,267 Likes: 4 Patient Advocate (old timer, 2000 posts) | OP Patient Advocate (old timer, 2000 posts) Joined: Jul 2012 Posts: 3,267 Likes: 4 | Thanks Ed. I didn't consider damage or involvement already being done, and is a possibility, good point. I had radiation 4x, two with IORT during surgery, 5 neck dissections, even a tumor itself, which was at level III at the carotid several times, so it's possible, even just by touching them, from what I understand, to cause symptoms, complications. When I had my radical neck dissection in 2011 the neck muscle, nerve, vein were removed, and cancer was scraped off the carotid artery, and alloderm was placed on it for protection. In a subsequent neck dissection, it had to be peeled off, and with IORT, they manually move, clamp nerve, structures out of the way, and place the radiation applicator directly on the tumor bed.
The hospital called me this morning to schedule a swallow study, so it was good I went to the SPOHNC meeting yesterday.
10/09 T1N2bM0 Tonsil 11/09 Taxo Cisp 5-FU, 6 Months Hosp 01/11 35 IMRT 70Gy 7 Wks 06/11 30 HBO 08/11 RND PNI 06/12 SND PNI LVI 08/12 RND Pec Flap IORT 12 Gy 10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux 10/13 SND 10/13 TBO/Angiograph 10/13 RND Carotid Remove IORT 10Gy PNI 12/13 25 Protons 50Gy 6 Wks Carbo 11/14 All Teeth Extract 30 HBO 03/15 Sequestromy Buccal Flap ORN 09/16 Mandibulectomy Fib Flap Sternotomy 04/17 Regraft hypergranulation Donor Site 06/17 Heart Attack Stent 02/19 Finally Cancer Free Took 10 yrs
| | | | Joined: Jul 2012 Posts: 3,267 Likes: 4 Patient Advocate (old timer, 2000 posts) | OP Patient Advocate (old timer, 2000 posts) Joined: Jul 2012 Posts: 3,267 Likes: 4 | I was looking into some of my medications I'm taking, which can cause weakness (asthenia), muscle wasting too, not including the chemo drugs I've taken previously, Taxotere, Cisplatin, 5-FU, Erbitux, which are probably even worse offenders.
10/09 T1N2bM0 Tonsil 11/09 Taxo Cisp 5-FU, 6 Months Hosp 01/11 35 IMRT 70Gy 7 Wks 06/11 30 HBO 08/11 RND PNI 06/12 SND PNI LVI 08/12 RND Pec Flap IORT 12 Gy 10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux 10/13 SND 10/13 TBO/Angiograph 10/13 RND Carotid Remove IORT 10Gy PNI 12/13 25 Protons 50Gy 6 Wks Carbo 11/14 All Teeth Extract 30 HBO 03/15 Sequestromy Buccal Flap ORN 09/16 Mandibulectomy Fib Flap Sternotomy 04/17 Regraft hypergranulation Donor Site 06/17 Heart Attack Stent 02/19 Finally Cancer Free Took 10 yrs
| | |
Forums23 Topics18,249 Posts197,138 Members13,321 | Most Online1,788 Jan 23rd, 2025 | | | |