| Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 10,507 Likes: 7 | May patients will have what we call a "waddle" or a "turkey waddle" after undergoing the neck dissection and other treatments for OC. Its perfectly normal. You probably have some residual swelling there. In time it will go down a little but it probably will not completely disappear.
Please check your messages. Look for the tiny flashing envelope next to the My Stuff tab and click on it. Ive sent you a private message (PM) with an important link. Please review the link and add a signature. It greatly helps us to help you. ChristineSCC 6/15/07 L chk & by L molar both Stag I, age44 2x cispltn-35 IMRT end 9/27/07 -65 lbs in 2 mo, no caregvr Clear PET 1/08 4/4/08 recur L chk Stag I surg 4/16/08 clr marg 215 HBO dives 3/09 teeth out, trismus 7/2/09 recur, Stg IV 8/24/09 trach, ND, mandiblctmy 3wks medicly inducd coma 2 mo xtended hospital stay, ICU & burn unit PICC line IV antibx 8 mo 10/4/10, 2/14/11 reconst surg OC 3x in 3 years very happy to be alive | | | | Joined: Aug 2014 Posts: 61 Supporting Member (50+ posts) | OP Supporting Member (50+ posts) Joined: Aug 2014 Posts: 61 | Thank you all. I will do that christine, soon. Also, I helped my soon clean my pool filter, I almost passed out 2 times. Heart racing, I had to sit down 2 times. One thing, I quit all pain meds last week. Since then I have been going through major withdrawal. Im on day 7 no pain meds... it is and was bad.. is that all withdrawal problems too.
Tongue Cancer 1/2 tongue removed, replaced by flap from forearm. April 15, 2014 neck disection, 1 lympnode involved, doctors removed all to make sure cancer is gone. 30 rad treatments and 2 cisplatin chemo, doctor said I did not need the third one. Finished up July 30,2014 Chemo treatment was my choice. The board felt surgery and radiation was plenty to take care of my cancer. | | | | 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 | At the levels you were at, you should be past the withdrawal stage. About the only thing they would have prescribed would be benzodiazepines but that would have been for the first few days. Try drinking a lot of water and do some exercise like walking and running. Eat well. Rest. The only other options are rehab and you certainly are doing well enough overall that I wouldn't think that was be necessary. If you have any atavan or valium, that would take the edge off.
I am curious if your doctor was involved in your decision to stop the pain meds. They could have made it much easier by keeping a patch on a couple extra days and then going to 25 mcg/hr and going 5-7 days and you would have been done. I did almost what you did with 150 mcg/hr but i also spread it out over 2 weeks.
Your legs should be about the only thing bothering you. If it is worse than that, contact your doctor.
You sound like you may have gotten dehydrated. Do you check your blood pressure at home? That may be something you want to do in the future. It can sneak up, especially after treatment.
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: Aug 2014 Posts: 61 Supporting Member (50+ posts) | OP Supporting Member (50+ posts) Joined: Aug 2014 Posts: 61 | Thank you. Im better now. It may have been the heat, I have not done much since april. I did call my doctor, told me its all due to withdrawal and recovery. I just ate 1/2 burger and mashed potatoes. My neck still bothers me, sore and stiff by my adams apple. Not as bad since I moved around some today... im talking and eating by mouth pretty good, only 5 weeks out of treatments. I suppose I should be happy....u
oh yea , my legs are weak. I could not move last week.
Last edited by beermanx; 08-25-2014 04:09 PM.
Tongue Cancer 1/2 tongue removed, replaced by flap from forearm. April 15, 2014 neck disection, 1 lympnode involved, doctors removed all to make sure cancer is gone. 30 rad treatments and 2 cisplatin chemo, doctor said I did not need the third one. Finished up July 30,2014 Chemo treatment was my choice. The board felt surgery and radiation was plenty to take care of my cancer. | | | | 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 | Water is your new best friend. Drink a little extra till you get past the withdrawal stuff. You're really doing amazingly well at this point. Keep it up!
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: Aug 2014 Posts: 61 Supporting Member (50+ posts) | OP Supporting Member (50+ posts) Joined: Aug 2014 Posts: 61 | Thank you. I noticed I have lumps, or tissue on both cheeks inside of mouth .. this started since I am eating with mouth. They are in back, where I have no teeth. I think the spaces in my mouth could be causing this.
Tongue Cancer 1/2 tongue removed, replaced by flap from forearm. April 15, 2014 neck disection, 1 lympnode involved, doctors removed all to make sure cancer is gone. 30 rad treatments and 2 cisplatin chemo, doctor said I did not need the third one. Finished up July 30,2014 Chemo treatment was my choice. The board felt surgery and radiation was plenty to take care of my cancer. | | | | Joined: Aug 2014 Posts: 61 Supporting Member (50+ posts) | OP Supporting Member (50+ posts) Joined: Aug 2014 Posts: 61 | Any one else get bumps on inside of cheeks, back by molars? They showed up once I started to eat.. thanks
Tongue Cancer 1/2 tongue removed, replaced by flap from forearm. April 15, 2014 neck disection, 1 lympnode involved, doctors removed all to make sure cancer is gone. 30 rad treatments and 2 cisplatin chemo, doctor said I did not need the third one. Finished up July 30,2014 Chemo treatment was my choice. The board felt surgery and radiation was plenty to take care of my cancer. | | | | 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 | I had, have that, but not sure if it's the same as yours. Mine is caused by a combination of things, thickening of cheek from fibrosis, biting of gum, rubbing of sharp molar, and then sometimes abscesses, probably after getting infected. Sometimes teeth can be filed down by the dentist, if so is the cause, rinsing mouth with salted warm water, brushing after eating, to reduce chance of infection or further infection or a round of antibiotics if the doctor believes it is necessary. This has been ongoing for a few years, which is finally going to be able to be addressed by teeth extractions The required HBOT has also helped. I hope this helps.
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: Aug 2014 Posts: 61 Supporting Member (50+ posts) | OP Supporting Member (50+ posts) Joined: Aug 2014 Posts: 61 | Thank you. Funny thing is , my back teeth were pulled. But I do chew my food back there, try anyways. There is no pain. Sometimes there is white on them, but that comes off. Could I be biting the sides of mouth while eating? Ty
Tongue Cancer 1/2 tongue removed, replaced by flap from forearm. April 15, 2014 neck disection, 1 lympnode involved, doctors removed all to make sure cancer is gone. 30 rad treatments and 2 cisplatin chemo, doctor said I did not need the third one. Finished up July 30,2014 Chemo treatment was my choice. The board felt surgery and radiation was plenty to take care of my cancer. | | | | 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 | Could be thrush, candida, which white plaque can be scraped off, or a co-combination with other conditions. Thrush is quite common, during, and even after treatment, which may need antifungals to properly treat. It's best to tell your doctor, and see what they say.
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
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