| Joined: Jan 2011 Posts: 49 Likes: 1 Contributing Member (25+ posts) | OP Contributing Member (25+ posts) Joined: Jan 2011 Posts: 49 Likes: 1 | I have not been on for quite awhile but I know there is someone here who will give me some insight. About3-6 months ago I started having what feels very much like pins and needles in my right shoulder. It was very consistent and mostly at bedtime at first. The feeling would feel like it grew across the shoulder and then it would "shimmer" down into my upper chest/arm area. My medical status has been all positive although my dentist questioned an area on my tongue at my last dental check up but when my oral surgeon evaluated it was not identified as a concern. So, if anyone has experienced this or knowledge of this type of after treatment issue I would be interested in hearing from you. I have an appointment with a doctor from Moss Rehab but wanted to check in here with all you, the experts!
63 years old Nona to Alora, Emery, Ilyana, Harper, Nolan, & Rory. Yogini since 2012. Namaste.
Diagnosed 10/5/20 Oral Cancer/ RT side of tongue SCC Stage I Partial Glossectomy 10/23/20 Right Neck Dissection 12/4/20 Clear Nodes BOT SCC 1/18/11 Stage IV N3 M0 HPV+ Port2/18/11 Treatment start 2/22 CISplatin 2rnds, Rads:35 treatments July 12 doctors' deemed me cancer free-port out July 18. Non-smoker, was a light-drinker No drinking since diagnosis | | | | 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 | There can be different causes for this, and don't know if mine is the same, but I have neuropathy in the hands, legs, feet for years since chemo, and limited arm/ shoulder mobility from my neck dissections that followed. More recently, my left arm/hand have increased numbness, pins and needles, barely any mobility, and pain/numbness in the deltoids, upper chest on the left side, which I haven't had before. My Oncologist referred me to a neurologist, and physical therapy when it was only slight, and my ENT requested an MRI to rule out any recurrence, which came back clear. My surgeon is thinking "Brachial Plexopathy." I think removal of my carotid may being involved too, and is when some of my recent symptoms started. I haven't seen the neurologist yet, but that's where I stand, so not much of an answer myself. I needed something for the pain, and Percocet, Gabapentin and an anti-inflammatory cream, Voltaren, is helping. http://en.m.wikipedia.org/wiki/ParesthesiaGood luck.
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 | As Paul says, the brachial plexus nerve bundle is most likely the cause. Everything branches to the chest and arms from there. I believe it is very treatable and managed, although, not so with any clipped nerves from surgery. They can heal but it takes years. I was diagnosed with brachial plexopathy and after trying many medications, I went a different route using a specialized neurological chiropractor. I wouldn't suggest this route if you aren't very active. One thing to watch for is progressive difficulty breathing as the nerves through the chest are key to breathing.
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: Jan 2011 Posts: 49 Likes: 1 Contributing Member (25+ posts) | OP Contributing Member (25+ posts) Joined: Jan 2011 Posts: 49 Likes: 1 | I knew you would come through although we know finding out it is one more thing is not a true positive but it certainly helps to put a face on this feeling. I am active, a regular yoga practictioner which does require use of my brachial area. I did not have a peg or any other alternative feeding method but I lost a good 20 pounds. I recently implemented Joel Furhman's nutritional eating program and this has really made a difference in my over all physiology. I think the shoulder has had limited improvement since I first noticed it. Initially there was pain but it has gone away. I now understand it will take time and still I hear in your answer Uptown it could actually worsen...mentally I will set my mind to stopping it from interfering with my progress. I think the consistent use in yoga practice may be warding off the addition of true pain...I just find it totally annoying that when I get to bed each night it comes on like gangbusters most of the time. You are both a true resource for knowledge with your head and neck treatments and experiences. I thank you from my heart for your willingness to share!
63 years old Nona to Alora, Emery, Ilyana, Harper, Nolan, & Rory. Yogini since 2012. Namaste.
Diagnosed 10/5/20 Oral Cancer/ RT side of tongue SCC Stage I Partial Glossectomy 10/23/20 Right Neck Dissection 12/4/20 Clear Nodes BOT SCC 1/18/11 Stage IV N3 M0 HPV+ Port2/18/11 Treatment start 2/22 CISplatin 2rnds, Rads:35 treatments July 12 doctors' deemed me cancer free-port out July 18. Non-smoker, was a light-drinker No drinking since diagnosis | | | | Joined: Oct 2008 Posts: 246 Likes: 1 Gold Member (200+ posts) | Gold Member (200+ posts) Joined: Oct 2008 Posts: 246 Likes: 1 | To add to the confusion, recently my husband has had several episodes of tingling that start on face, cheek, then corner of lip, arm, with decreased fine motor control of fingers. It is transient (several seconds to minutes), one side at a time, but strangely has occurred bilaterally.
Neurology exams & scans (CT & MRI) are negative. Does not have symptoms of stroke during episodes (hand strength, drooping mouth, etc.) Has had neuropathy since chemo, but this is new. I could write more....
Obviously, I'm not looking for a dx here, but I also am wondering if this has happened to anyone else post tx.
CG to husband, dx @ age 65, nonsmoker/social drinker. Dx 5/08 SCC Stage IV, BOT T1N2aM0. 33 IMRT - completed 9/12/08. Induction Chemo (Cisplatin, Taxotere & 5FU), plus concurrent Cisplatin. 1/09 PEG removed; 5/09 neg PET/CT; 5/10 PET/CT NED Dental extraction & HBOT 2013; ORN 2014; Debridement/Tissue Transfer & HBOT 2016
| | | | 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 | I have had that from head to toe, travleottie. It is well studied but not well understood. I could bore you with years of details but the real key is improving blood flow while periodically checking calcium levels. There are many early intervention possibilities but with me, I was too little, too late. I don't know if I can reverse it or stop it, but I certainly have managed it beyond anything doctors thought was medically possible.
I was curled up in a ball, unable to sit up or stand up because there were no muscles left and it hurt from nerve pain head to toe. I emerged from hospice care and have put back 30% more body weight and mostly muscle. I just retired the last of the machines that helped me regain body functions.
Blood flow, removing nerve impingement, diet, cardio work, light resistance work and stretching are all part of the complex puzzle. It is a full-time job but it's working as long as I want it to. 5 days of nothing causes muscles to start shriveling up again.
Statistical outlooks given by several of my doctors says about 1/2 of 1% will get to the point of no return after radiation above 45 Gy to the upper chest to the ears. That would be maybe 30-40 people a year for our group. Numbers are only historical calculations based on what happened and not necessarily what will be.
Be well...but be diligent.
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: Jan 2011 Posts: 49 Likes: 1 Contributing Member (25+ posts) | OP Contributing Member (25+ posts) Joined: Jan 2011 Posts: 49 Likes: 1 | Uptown, sheer will and determination is on your side...do you have support, family, etc? I know much of what keeps me going is the thought of those who care about me and of more importance who I want to be here for. The gift that keeps on giving has certainly taken on a whole new meaning...it saves and then stealthily tests to see if you really want to continue on. I have read in posts about the discovery of white patches and then to read these patches can be nothing at first or appear to be non-cancerous only to be what looks like months or years later to be scc. Was there pain, any other symptoms to say this is cancer? Was the dentist involved? Very curious...my dentist has not gained my confidence. Still seeing my head and neck team very 4 months. Thanks to anyone wanting to share
63 years old Nona to Alora, Emery, Ilyana, Harper, Nolan, & Rory. Yogini since 2012. Namaste.
Diagnosed 10/5/20 Oral Cancer/ RT side of tongue SCC Stage I Partial Glossectomy 10/23/20 Right Neck Dissection 12/4/20 Clear Nodes BOT SCC 1/18/11 Stage IV N3 M0 HPV+ Port2/18/11 Treatment start 2/22 CISplatin 2rnds, Rads:35 treatments July 12 doctors' deemed me cancer free-port out July 18. Non-smoker, was a light-drinker No drinking since diagnosis | | | | Joined: Jun 2007 Posts: 10,507 Likes: 6 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: 6 | I think the white patches you are referring to are most commonly known as either dysplasia or leukoplakia. These white (sometimes red) patches do not always turn into oral cancer but sometimes as time goes by, they will. There are many other non cancerous patches that can happen in a healthy person's mouth. Because of this, its important to get any sore or patch checked by a professional (qualified ENT) if it has not healed on its own in 2 or 3 weeks.
Patients are all different. Some will experience pain while others have no pain or any symptoms at all.
As far as dentist go, not all dentists are familiar with identifying or treating oral cancer or patients with oral cancer. Many dentists have never even seen an oral cancer tumor and do not know what to look for. This is due to not always continuing their education. Often dentists focus only on the teeth ignoring anything else in the mouth. This is why a dentist is not the best place to go for an abnormality in your mouth. Its best to seek out a qualified ENT who specializes in oral cancer. Always better to be safe than sorry.
Best wishes! 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: Jan 2011 Posts: 49 Likes: 1 Contributing Member (25+ posts) | OP Contributing Member (25+ posts) Joined: Jan 2011 Posts: 49 Likes: 1 | Thanks for your response Christine. I am curious since you are in PA not far from where I am, do you recommend or know of an ENT? I have had some other recommendations but one doctor had me waiting in his office for over 2 hours. I think that was unreasonable. I do understand about the white patches being benign but when does one know it is truly something to act on? I don't want to be running to the doctor unless it is truly warranted. My surgeon said the cancer is usually red, bleeding area. Is there pain? The surgeon said, no. Just want to be as clear as I can and be proactive about prevention as Much as I possibly can. Thanks!
63 years old Nona to Alora, Emery, Ilyana, Harper, Nolan, & Rory. Yogini since 2012. Namaste.
Diagnosed 10/5/20 Oral Cancer/ RT side of tongue SCC Stage I Partial Glossectomy 10/23/20 Right Neck Dissection 12/4/20 Clear Nodes BOT SCC 1/18/11 Stage IV N3 M0 HPV+ Port2/18/11 Treatment start 2/22 CISplatin 2rnds, Rads:35 treatments July 12 doctors' deemed me cancer free-port out July 18. Non-smoker, was a light-drinker No drinking since diagnosis | | | | Joined: Jun 2007 Posts: 10,507 Likes: 6 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: 6 | 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 | | |
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