| Joined: Jun 2013 Posts: 346 Likes: 3 Platinum Member (300+ posts) | OP Platinum Member (300+ posts) Joined: Jun 2013 Posts: 346 Likes: 3 | My current form of exercise is tae kwon do. I am realistic enough to know I will be falling behind over the next several months, which is disappointing because right now my husband and I are at the same rank and we are just about a year out from black belt.
I am guessing that there are physical limitations when one has a feeding tube inserted. How does it affect range of motion? I am already letting our instructors know that I will be sitting out on sparring, so I don't get kicked. Anything else I ought to be aware of? I figure fatigue will keep me out of most trouble.
Also they recommend a port if we do the chemo. Any special complications from that?
Thanks for any tips!
Surgery 5/31/13 Tongue lesion, right side SCC, HPV+, poorly differentiated T1N0 based on biopsy and scan Selective neck dissection 8/27/13, clear nodes 12/2/13 follow-up with concerns 12/3/13 biopsy, surgery, cancer returned 1/8/14 Port installed PEG installed Chemo and rads 2/14/14 halfway through carboplatin/taxotere and rads March '14, Tx done, port out w/ complications, PEG out in June 2017: probable trigeminal neuralgia Fall 2017: HBOT Jan 18: oral surgery
| | | | Joined: Jul 2012 Posts: 3,267 Likes: 1 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jul 2012 Posts: 3,267 Likes: 1 | It takes a few days after surgery for the pain to subside, and and should not take a shower for a few days, and needs to be covered when showering thereafter for a week or two, and should not lift heavy objects for a few weeks also. The gastrologist or surgeon who does the surgery will give you the best instructions. Just use common sense also, and avoid anything that can pull the tube from your stomach, which can be secured several ways, as not to dangle, and get pulled suddenly. The other thing is with chemo, your immune system can be weakened, and easily catch infections from other people, pet feces, gardening, so you need to use personal protection, hygiene, for that.
I have a mediport for 4 years, and avoid being stuck by a needle for an IV in most cases, but not always, and care should be taken by those trained too do so. The downside is infections can occurr, go systemic, if healthcare personal do not follow proper access, cleansing. The peg-tube can also get infected, go systemic, and proper care needs to be taken with that also.
Good luck, and other peg/port users may add.
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: Jan 2013 Posts: 1,291 Likes: 1 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jan 2013 Posts: 1,291 Likes: 1 | I'm very sorry to hear about the recurrence. It is the thing we all fear the most. As to the port, there is general considerations to not do too much physical stressing of the upper body to avoid potential damage to the port. Since I am right handed and did want to as able as possible, the surgeon placed the port on the left side so that would minimize stressing the port.
If you get a PEG and port, I'd be very surprised if the docs allowed you do continue doing any physical contact sports until the devices are removed and you were fully healed. It just seems the risks from dislodging a port or PEG are pretty great. Don
Don Male, 57 - Great health except C Dec '12 DX: BOT SCC T2N2bMx, Stage 4a, HPV+, multiple nodes 1 tooth out Jan '13 2nd tooth out Tumor Board -induction TPF (3 cycles), seq CRT 4-6/2013 CRT 70gr 2x35, weekly carbo150 ended 5/29,6/4 All the details, join at http://beatdown.cognacom.com | | | | Joined: Jun 2013 Posts: 346 Likes: 3 Platinum Member (300+ posts) | OP Platinum Member (300+ posts) Joined: Jun 2013 Posts: 346 Likes: 3 | I intend to avoid the physical contact parts. But the stretching out and the forms seemed like they woukd be good exercise to continue. That is why I was not sure.
These are good care tips, and give me more questions to ask. Thank you.
Surgery 5/31/13 Tongue lesion, right side SCC, HPV+, poorly differentiated T1N0 based on biopsy and scan Selective neck dissection 8/27/13, clear nodes 12/2/13 follow-up with concerns 12/3/13 biopsy, surgery, cancer returned 1/8/14 Port installed PEG installed Chemo and rads 2/14/14 halfway through carboplatin/taxotere and rads March '14, Tx done, port out w/ complications, PEG out in June 2017: probable trigeminal neuralgia Fall 2017: HBOT Jan 18: oral surgery
| | | | 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 | Kristen,
Sorry to hear about your recurrence. As Don says, the port may preclude a lot of physical activity including forms. For whatever reason, they discouraged me from lifting weights or doing a 100 mile bike ride when my port was put in. I didn't ask if it was because it was new and soon I wasn't in condition to consider either for a while. As far as the PEG you can get a MIC Key or button. It rides almost flush with the skin and has a detachable hose when needed that snaps in and out. You even get a thin and thicker tube for water or other.
Hope this helps.
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: Nov 2013 Posts: 104 Senior Member (100+ posts) | Senior Member (100+ posts) Joined: Nov 2013 Posts: 104 | It was my experience as what used to be in very decent shape(infantry then college crew) then about 7 years off but ran a tri or two. That the PEG was very painful for the first week and a half+. The doctors told me that my there was a lot of muscle still on my abdominal wall and it was gonna make it more painful compared to someone who was relatively less active. The Mediport feels like you shot a 10gage magnum round and didn't seat the stock properly in your shoulder, that feeling that you would normally feel for about 4-5 min last about a week. But they give you vicodine I did my two surgerys back to back and it was not a very fun week. But two weeks out I feel mostly normal. I would suggest that you figure out a position for your peg tube and keep it bound up with some ace bandage for the first two-4 days.
Brian Stage IV TxN2aM0 HPV+ SCC 38 y.o. male 9/20/13 Sentinel Node Found 12/5/13 Start of 72Gy and 5 bags of Cisplatin 1/21/14 Treatment Ends 1/25/15 1 Yr clear
| | | | Joined: Mar 2013 Posts: 421 Likes: 1 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Mar 2013 Posts: 421 Likes: 1 | While I didn't have a port, I did have a PEG. It's admirable that you want to continue with your fitness regime however, for many including myself, the treatment hit me so hard that by the third week I pretty much hit the wall and exercise was out of the question. I can also tell you that for me stretching and even light physical activity such was a bit uncomfortable with the PEG sticking out of my belly. Definitely consult with your team concerning limitations.
Positive thoughts and prayers
57 Cardiac bypass 11/07 Cardiac stents 10/2012 Dx'd 11/30/2012 Tx N2b MO Stage IV HPV+ Palatine Tonsillectomy/Biopsies 12-21-12 Selective Neck Dissection/Lingual Tonsillectomy/biopsies TORS 2/7/13 Emergency Surgery/Bleeding 2/18/13 3/13/2013 30rads/6chemo Finished Tx 4/24/13 NED Since
| | | | Joined: Jun 2013 Posts: 346 Likes: 3 Platinum Member (300+ posts) | OP Platinum Member (300+ posts) Joined: Jun 2013 Posts: 346 Likes: 3 | Brian, muscle will not be an issue for me. I am not in that good shape!
Fishman, yeah, I kinda figured I would be wiped out. But tae kwon do is a sanity saver for me so I was hoping. Sigh.
I promise I will use caution. I am not an athletic person, anyway. I just enjoy the art of it.
Surgery 5/31/13 Tongue lesion, right side SCC, HPV+, poorly differentiated T1N0 based on biopsy and scan Selective neck dissection 8/27/13, clear nodes 12/2/13 follow-up with concerns 12/3/13 biopsy, surgery, cancer returned 1/8/14 Port installed PEG installed Chemo and rads 2/14/14 halfway through carboplatin/taxotere and rads March '14, Tx done, port out w/ complications, PEG out in June 2017: probable trigeminal neuralgia Fall 2017: HBOT Jan 18: oral surgery
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