Previous Thread
Next Thread
Print Thread
Page 2 of 3 1 2 3
Joined: Sep 2006
Posts: 8,311
Senior Patient Advocate
Patient Advocate (old timer, 2000 posts)
Offline
Senior Patient Advocate
Patient Advocate (old timer, 2000 posts)

Joined: Sep 2006
Posts: 8,311
Gary,

You're trying to cheer me up during the throws of tax season, Right??


David

Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
Joined: Nov 2002
Posts: 3,552
Patient Advocate (old timer, 2000 posts)
Offline
Patient Advocate (old timer, 2000 posts)

Joined: Nov 2002
Posts: 3,552
Ed,
maybe you're a candidate for botox injections.

500/5 Vicodin is 500mg of Tylenol and 5 mg of oxycodone (but you knew that).

I disagree with him in that all narcotics, synthetic or otherwise can cause constipation.

Valium works for me alone most of the time - I don't use the codeine unless it is particularly gnarly.

My liver function has progressively improved as well, but my personal protocol is not to ingest anything that could further exacerbate the damage.


Gary Allsebrook
***********************************
Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2
Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy)
________________________________________________________
"You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
Joined: Aug 2003
Posts: 1,627
Patient Advocate (1000+ posts)
Offline
Patient Advocate (1000+ posts)

Joined: Aug 2003
Posts: 1,627
Gary and Ed,
How do you guys get your doctors to give your medication to help with the spasms? I have been complaining about them for over a year now and all I ever hear is "go to PT". PT might loosen up my neck but it doesn't stop the spasms. It does make it tough to sleep and I have a difficult time sitting and watching my girls play their sports because of the position of my neck. I end up having to stand during the games. I would love to have some medication that could relieve it.

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.
Joined: Nov 2002
Posts: 3,552
Patient Advocate (old timer, 2000 posts)
Offline
Patient Advocate (old timer, 2000 posts)

Joined: Nov 2002
Posts: 3,552
I am fortunate that my doctors understand fibrosis caused by radiation damage. The last time I saw my MO he asked me if I needed any scripts but my GP has been pretty good about renewing my Valium and Codeine scripts. I usually just email her when I'm getting low and they mail it to the house (exception is the codeine -I have to pick that up at the hospital pharmacy due to federal regulations). Like Ed, I did try PT and attempted to train different muscle groups to take up the slack but it was unsuccessful. I believe that long ago I sent them some links about fibrosis and muscle damage from RT. Last time in they offered me Flexeril but I declined it as it is stronger than Valium and Valium works just fine. I can function just fine on Valium but Flexeril made me groggy and I would also get a hangover from it. I may attempt to extend my SSDI when it expires in October.


Gary Allsebrook
***********************************
Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2
Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy)
________________________________________________________
"You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
Joined: Aug 2006
Posts: 199
Me2 Offline
Senior Member (100+ posts)
Offline
Senior Member (100+ posts)

Joined: Aug 2006
Posts: 199
Gary - have you tried Skelaxin? I was just talking with my sis, who is a PT, about the different muscle relaxants and we both agreed that Skelaxin seemed to be the one that works the best with the least amount of side effects. Flexaril makes me feel horrible... groggy, dry mouth, etc..


Ginny M. SCC of Left lateral tongue Dx 04/06,Surgery MDACC 05/11/06: Partial glossectomy with selective neck dissection. T1N0M0 - no radiation. Phase III clinical trial ("EPOC" trial)04/07 thru 04/08 because tests showed a 65% chance of recurrence. 10 Year Survivor!
Joined: Nov 2002
Posts: 3,552
Patient Advocate (old timer, 2000 posts)
Offline
Patient Advocate (old timer, 2000 posts)

Joined: Nov 2002
Posts: 3,552
I'm perfectly content with Valium but I will ask about the Skelaxin.


Gary Allsebrook
***********************************
Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2
Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy)
________________________________________________________
"You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
Joined: Dec 2003
Posts: 2,606
Likes: 2
Patient Advocate (old timer, 2000 posts)
Offline
Patient Advocate (old timer, 2000 posts)

Joined: Dec 2003
Posts: 2,606
Likes: 2
I did pursue the botox injections but after the EMG and this other thing using about a 3 or 4 inch fine needle into my neck, arm, shoulder and believe it or not through the bottom of my chin into my tongue, they determined it was more motor related and botox would not help. They mentioned Gabapentin and Skelaxin but after Neurontin, Flexiril and about 5 others I ended up believing the Valium does the best. I did go back to Fentynil patches but only 25 mcg/hr and I use 10/325 Vicodin and 5 mg of valium at night. This seems to give me good sleep and I function fine at work although I would like to use nothing but that doesn't seem to be in the cards, unfortunately.

Minnie, you should just mention to your doctor that you know other people that have had significant relief with the Valium/Vicodin combination just before bedtime and he should do it. My spasms started out with the jaw literally locking with a big lump like a fist where it locks. Now I just get a constant firing like twitches that gets ooos and ahhhhs from all the doctors when I just ask them to lay their hand on my neck. It is definitely fibrosis from the radiation. I have now had neurological tests done and in the end they attribute it to radiation but have no known treatment. I opted for a good night's sleep. If I don't get that, the twitches are a series of many muscles many times per second. My wife says it looks like Parkinson's when I am sitting at the computer. The term now I've learned is "fasciculation". That is just so much more sexy than muscle twitch! It's nothing close to the infamous "Sabrina's butt dance" if you remember that one (Lhermitte's).

I am so sorry I forgot to mention the Kansas Jayhawks won the National basketball Championship on my 52nd birthday, April 7. Happy belated birthday to me, happy belated birthday to me...happy belated birthday to me-ee...happy belated birthday to me!

Thinking of all of you but especially Gary and Minnie right now!

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: Mar 2008
Posts: 6
Member
Offline
Member

Joined: Mar 2008
Posts: 6
Greeting's Everyone,
As Ed mentioned in the above post, I'm in my third rad TX , 1 Cisplatin/Decadron/malatron?/and came out of the local K-mart today after shopping for roses and began to get the pins and needles all over my body , then the rt neck/shoulder spasm started .
Ricky
____________________________________________
DX: 2/7/08
SCC rt tonsil
Rt: neck disection 3(L) removed
30 rads@200 IMRT/3Cisplatin
___________________________________________

Joined: Jan 2004
Posts: 64
Supporting Member (50+ posts)
Offline
Supporting Member (50+ posts)

Joined: Jan 2004
Posts: 64
I found this thread when I did a search for botox injections. I just read an article from the otolaryngology dept of the university of iowa about the use of botox into the SCM muscle to alleviate spasms due to late effects of radiation. I thought I had struck gold, but now I'm not so sure. I have been having progressive pain in my neck for a while now, but i'm not sure if they are spasms. It is very tender, almost like trigger points, but my neck does not twitch. my trapezius at the base of my skull is super tender as well as where the neck and shoulder meet. This is all on the opposite side of my disection, although i was radiated there. Ive been to neurologist and had an mri done of my neck. the mri states i have some mild bulging in c4 through c6, some neural encroachment etc. everything is mild and the dr suggested elevil, which i found out is an antidepressant used for nerve pain. i've asked my mo for pain meds throughout the last several months, and he basically refused. these are the docs who only prescribed me liquid vicodin during the worst part of treatment. I guess i didnt complain enough. eek well i'm certainly making up for it now, but no luck on the meds. i take .25mg xanax from time to time and raid my medicine cabinet for old pain meds(i've been taking a 1/2 a darvocet every other day, but just took my last one last night). i contacted a pain management center at a local hospital and asked about botox injections and the woman had no idea what i was talking about cry. does anyone know where i can inquire about this? also, Gary, do you take the valium and vicodin at the same time and can you function on that? Also, my left throat, tongue, sinus and ear have continued to hurt(just a dull ache/pressure), pretty constant now. they assure me it isnt a recurrence. could that be a muscle spasm as well? i've read about glossopharyngeal and trigeminal neuralgia however my pain in not sharp and severe, so maybe atypical? Lastly(i promise), i read a study on a drug combination of pentoxifylline and vitamin e for radiation induced fibrosis. anyone ever hear of it? sorry so long, i seem to be my own advocate these days. thanks.

Kelley


SCC tonsil(left) with contralateral mets. Modified right neck disection August, 2002. 33 rads(62 gy)both sides of neck and 3 cycles cisplatin completed October 25, 2002. 34 yo at time of diagnosis
Joined: Jun 2007
Posts: 5,260
Patient Advocate (old timer, 2000 posts)
Offline
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 5,260
I take a .25 xanax twice a day and usually split a percocet in half for 2 times. As for darvocet, to me it's about as good as aspirin. just doesn't kill pain at all. The Drs are supposed to control your pain with meds if necessary.


Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
Page 2 of 3 1 2 3

Link Copied to Clipboard
Top Posters
ChristineB 10,507
davidcpa 8,311
Cheryld 5,260
EzJim 5,260
Brian Hill 4,912
Newest Members
Jina, VintageMel, rahul320, Sean916, Megm37
13,103 Registered Users
Forum Statistics
Forums23
Topics18,166
Posts196,921
Members13,103
Most Online458
Jan 16th, 2020
OCF Awards

Great Nonprofit OCF 2023 Charity Navigator OCF Guidestar Charity OCF

Powered by UBB.threads™ PHP Forum Software 7.7.5