#54785 05-08-2004 06:32 AM | Joined: Aug 2003 Posts: 1,627 Patient Advocate (1000+ posts) | OP Patient Advocate (1000+ posts) Joined: Aug 2003 Posts: 1,627 | Hello everyone, I had radiation to both sides of my neck and over the past 10 months I have noticed changes to both sides. I had the neck disection on the left side. Over the past few months I have noticed lots of gradual changes to the right side that had no surgery. Some stiffness, some aches and pains, etc. Is it normal for this to occur? Also, while my energy level slowly gets better, especially now that my thyroid issues are under control, I notice that my strength is still low. Meaning that I notice I'm not as strong as before. I used to be able to carry all the groceries in at one time rather then make two trips. You know the deal, it's like a challenge to see how many bags you can hang off your arms and body AND manage to shut the van door, lol. I can't do that anymore I have to make two trips. Also, part of my job is teaching children how to tumble which requires spotting on my part when they progress to back handsprings, etc. I can't lift the same weight I could before all of this. Does anyone else notice a lack of strength? Take care, Minnie
SCC Left Mandible. Jaw replaced with bone from leg. Neck disection, 37 radiation treatments. Recurrence 8-28-07, stage 2, tongue. One third of tongue removed 10-4-07. 5-23-08 chemo started for tumor behind swallowing passage, Our good friend and much loved OCF member Minnie has been lost to the disease (RIP 10-29-08). We will all miss her greatly.
| | |
#54786 05-08-2004 07:03 AM | Joined: Mar 2004 Posts: 164 Gold Member (100+ posts) | Gold Member (100+ posts) Joined: Mar 2004 Posts: 164 | Minnie,
I'm three months out and had chemo and radiation. My strength is no where near where it used to be. I still have stiffness in my neck as well. I think everything you're experiencing is normal. I read someone on the site say, one month for every week of treatment for recovery. I guess I have three month to go.
Lynn
Stage 3, N0, M0 oral tongue cancer survivor, 85-90% of tongue removed, neck disection, left tonsil removed, chemo/radiation treatments, surgery 11/03, raditation ended 1/04, lung mets discovered 4/04,
| | |
#54787 05-08-2004 01:27 PM | Joined: Dec 2003 Posts: 528 "OCF Down Under" "Above & Beyond" Member (500+ posts) | "OCF Down Under" "Above & Beyond" Member (500+ posts) Joined: Dec 2003 Posts: 528 | Hi Minnie I am 12 months out now and have also been surprised that my left neck is stiff and sore because I had my surgery on the right. I have so little strength in my right shoulder and arm so I put it down to strain because I am also right-handed and have noticed changes in my posture etc. These days I do household chores in small spurts and find that easier than a large project. My throat is sore on both sides now. It is OK so I guess that is from the mechanical process of swallowing. Strangely, I didn't have a sore throat at all when I had Stage 4 tonsil cancer. Glad you are recovering from your thyroid deficiency. I found that it took a few weeks for the thyroxine to kick in but when it did it made a huge difference. From Helen, with love
RHTonsil SCC Stage IV tx completed May 03
| | |
#54788 05-08-2004 02:50 PM | Joined: Apr 2004 Posts: 837 "Above & Beyond" Member (300+ posts) | "Above & Beyond" Member (300+ posts) Joined: Apr 2004 Posts: 837 | Minnie,
My surgery was on the left side (tongue and neck); radiation was on both sides. I still have stiffness on both sides of my neck after 15 years, although not terribly severe. (I frequently hear it making cracking sounds when I turn in either direction!) Also, my oncologist is still monitoring my thyroid -- it hasn't gotten to the point of needing medication, but it's trending that way and I do have periods of fatigue when I feel as though I should have more energy.
However, since I'm 15 years past radiation, I suppose I have to blame some of these weaknesses on age as well! In any event, they don't keep me from doing the things I really want to do.
Cathy
Tongue SCC (T2M0N0), poorly differentiated, diagnosed 3/89, partial glossectomy and neck dissection 4/89, radiation from early June to late August 1989
| | |
#54789 05-08-2004 04:20 PM | 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 | Minnie,
I am now about 7 months post treatment and I did not have the neck dissection. My neck was doing real good and then some lady decided to not stop at a red light and plowed into a car that hit a car that hit me and my neck and shoulder have been killing me since 1/22. My neck hurts especially on the left side and my left shoulder hurts. I had most of the radiation on my left side. My left shoulder joint and both of my hips have been real painful and I don't know why. I started lifting weights and it doesn't make it worse but it has helped immensely on getting the strength back. I lifted several 60 lb bags the other day and it is the first time I have been able to for months. I drank many cans of Boost High Protein March and April and it seemed to help with the strength. I never gained strength until I started back on the weights.
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
| | |
#54790 05-09-2004 01:52 AM | Joined: Jan 2004 Posts: 1,116 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jan 2004 Posts: 1,116 | Hi Minnie, I had the neck dissection on left side two years ago in May....I still have the stiffness and soreness in my neck..in fact sometimes the right side is worse, I asked my oncologist and he said it is compensatory. Yesterday I sat on the bleachers at my daughter's track meet all day and boy did I feel it...oh well, just glad I was able to be there!!! Have a wonderful Mother's Day....Love, Carol
Diagnosed May 2002 with Stage IV tongue cancer, two lymph nodes positive. Surgery to remove 1/2 tongue, neck dissection, 35 radiation treatments. 11/2007, diagnosed with cancer of soft palate, surgery 12/14/07, jaw split. 3/24/10, cancer on tongue behind flap, need petscan, surgery scheduled 4/16/10 ---update passed away 8-27-11---
| | |
#54791 05-10-2004 11:24 AM | Joined: Feb 2004 Posts: 162 Gold Member (100+ posts) | Gold Member (100+ posts) Joined: Feb 2004 Posts: 162 | Hi Minnie. I did not have surgery and I'm about 5 1/2 months post-treatment. The muscles in my neck feel stiff all the time. This is them trying to fiber over and harden from the radiation. I stretch my neck several times a day, but I fear I've lost some mobility. My strength is not what it used to be. I'm not as physically strong as I was, I don't have the stamina I used to and I have zero tollerance for any sort of sleep deprivation. Mind you, I'm doing really well and my friends probably couldn't tell just by hanging out with me, but I know....I can feel it. I feel much older than I did pre-treatment. When my muscles get sore from work or working out, they stay sore for longer and it hurts worse than it did before. There doesn't seem to be a day that goes by that I'm not dealing with some little ache or pain -- whether it's the muscles in my neck or fleeting soreness in my throat or ear or sore mucles from exersion -- it's always something.
-Brett
Base of Tongue SCC. Stage IV, T1N2bM0. Diagnosed 25 July 2003. Treated with 6 weeks induction chemo -- Taxol & Carboplatin once a week followed with 30 fractions IMRT, 10 fields per fraction over 6 more weeks. Recurrence October 2005.
| | |
#54792 05-10-2004 01:39 PM | Joined: Sep 2003 Posts: 153 Gold Member (100+ posts) | Gold Member (100+ posts) Joined: Sep 2003 Posts: 153 | hi Minnie, >Does anyone else notice a lack of strength?
well yes, even 2 yrs later. so at thanksgiving i started a regular light exercise program based on the book 'The Lance Armstrong Performance Program' it has lots of ideas/recommendations and a 7 week program for beginners/intermediate/advanced folks. i've done the beginner program 3 times now and it has help greatly. a key to the program is using a heart rate monitor and light execise 6 days per week. i think part of my weakness/fatigue is due to reduced cardio stuff from just being a couch potato since the radiation. my energy level has come back greatly...
yet like Brett and others, i need to be sure to get plenty of sleep and not over extend myself.
light, easy, routine is best for me.
cu, larryb | | |
#54793 05-16-2004 05:58 AM | Joined: May 2003 Posts: 41 Contributing Member (25+ posts) | Contributing Member (25+ posts) Joined: May 2003 Posts: 41 | Hi Minnie, I had left neck dissection and full blast radiation to both sides (and the front). They hit me from below the eyes to below the collar bone. I have all my upper body strength back, and most of the lower body (legs). I still get out of breath easy, so lower body is harder to work (squats get you breathing like a freight train). I still get tired in the afternoon, so workouts are best in the morning before work. I have cramping problems in the neck/shoulder area, probably caused by over zealous workouts. I do "shrugs" and the Nautilus neck machine to build up where they gutted me. I still get lots of tingling in the left neck/shoulder area, and cramps on both sides of the neck. I didn't think I would ever be able to pump iron much after cancer treatment, but I'm doing fine. I have more determination now than ever before. I also use a good quality protein, and L-glutamine supplement every day. O-O
Head and neck SCC TXN2bM0 stage IV Finished treatment 6/02
| | |
#54794 05-16-2004 07:13 AM | Joined: Jul 2003 Posts: 1,163 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jul 2003 Posts: 1,163 | Hi Minnie,
I had a right side pech muscle used for the reconstruction of my throat. I am very weak on the right side. It hurts to raise my arm and I know what you mean about picking things up. I find it easier and less painful to take light things with more trips. I started some re-hab exercise's but my right arm just hurt to much.
Dan
Daniel Bogan DX 7/16/03 Right tonsil,SCC T4NOMO. right side neck disection, IMRT Radiation x 33.
Recurrance in June 05 in right tonsil area. Now receiving palliative chemo (Erbitux) starting 3/9/06
Our good friend and loved member of the forum has passed away RIP Dannyboy 7-16-2006
| | |
#54795 05-16-2004 04:17 PM | Joined: Nov 2002 Posts: 458 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Nov 2002 Posts: 458 | Hi Minnie
For the first 6 or 7 months after finishing rad one can pretty much forget about getting back to normal, still healing from the rad if the rad isn't even still working. Remember, one month recoup time for each week of rad. Not to mention we tend to loose muscle mass as the body takes from the muscle mass we do have to help with the healing process from radiation. On top of that, the rad itself cooks some muscles, and even you only have rad/surgery on one side, the other side is going to get stiff from over compensating from the weakness of the treatment side. Also, probably during the treatment phase we lead pretty sedentary life styles and arent' that active, and that also dosn't help matters.
And, we aren't spring chickens anymore.
So what you're going though is pretty much par for the course. I started a basic excersize program, taking it easy at first. Rowing machine, light weights, swimming. Right side almost back to normal, left side, where they took muscle for the graft still not as strong, probably never will be. Small price to still be around to complain about it though.
Bob
SCC Tongue, stage IV diagnosed Sept, 2002, 1st radical neck dissection left side in Sept, followed by RAD/Chemo. Discovered spread to right side nodes March 2003, second radical neck dissection April, followed by more RAD/Chemo.
| | |
#54796 05-17-2004 07:38 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 | I had my mediport removed Friday and except for a bit of pain in that area, I am so excited to have no more devices or tubes left in this (lean) body. I have managed to ride the bike and lift a few weights the past 3 months and even though I feel a little fatigue from time to time, it almost feels back to normal! 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
| | |
#54797 05-17-2004 07:57 AM | Joined: Sep 2003 Posts: 1,244 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Sep 2003 Posts: 1,244 | Ed.. Great another step back on the real world.. Yuk weights and a bike.. noooo... would need more red wine to do that.... 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
| | |
#54798 05-17-2004 05:31 PM | Joined: Apr 2004 Posts: 482 "Above & Beyond" Member (300+ posts) | "Above & Beyond" Member (300+ posts) Joined: Apr 2004 Posts: 482 | Dear Minniea:I just had my neck dissection (staples out 3 days ago). Neck is stiff and nerve pain in about an 18" radius around the collar bone/neck connection point. After my rad/chemo I was very weak and enemic(sp). Doctor put me on Procrit which got me back to good blood components, both white and red cells, and brought my strenght back like magic. It was truly amazing. I am in a light exercise program for the surgery now, just moving head, neck, shoulder a little a few times per day. Will keep at it and hopefully get more and more a build the muscle back up. However, I lost my spring chickeness about 30 years ago, so I don't expect miracles, but exercise will improve almost anything, done in moderation and at a slow pace. Also, I have no pain, stiffness, soreness, anything on the left side (non-surgery side). Sounds like light exercise might help. When you had your surgery, they should have given you a couple of exercise sheets. If you can't find yours, I can FAX you a copy of mine. they're easy, I do them as I pick up my daughter from school. 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.
| | |
Forums23 Topics18,168 Posts196,927 Members13,104 | Most Online458 Jan 16th, 2020 | | | |