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#175040 12-08-2013 07:14 PM
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Posts: 596
Kerri Offline OP
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Dear friends,

I was wondering if anyone experiences the same or similar after effect as I do. I often get spasms or "Charlie horses" in the muscles of the front of my throat, mainly the platysma, which a very thin, but strong muscle that covers the entire front of the throat from the mandible to the clavicle. After my first cancer treatment with surgery alone, I did not experience this after effect, but after my second cancer which was treated with surgery and chemoradiation, it happens.

It mainly happens when I yawn, stress/strain these muscles during exercise and everyday movements, or simply looking down. Some days are better than others. I know that the number one reason for muscle cramps is dehydration and I have been sick for a couple of days and I'll admit that the symptoms have gotten worse, but I was wondering is there was any other remedy or vitamin supplement or food that anyone uses. I haven't used bananas often due to their tendency to cause constipation and I am still on narcotics for pain management, plus I learned that bananas do not have as much potassium as everyone thinks they do.

I'm just wondering if anyone has this or something like it happen and if you have had any luck in managing this symptom.

I'd appreciate any feedback or suggestions that you may have.

Thanks.
Love in OCF,
Kerri


37 y/o fem at Dx (23 wks preg @ dx on 3/16/11)
SCC L oral tongue (no risk factors)
L partial gloss/MND 3/28/11 @ 25 wks preg
T1-2N0M0; no rads/chemo
Tonsillectomy on 8/6/12 +SCC L tonsil T2-3N1M0 (HPV-)
Treated with 35 rads/7 carbo & taxol (Rx ended 10/31/12), but many hospitalizations d/t complications from rx.
Various scans since rx ended are NED!
Part of genetic study for rare cancers @ MGH.
44 years old now...I wasn't sure I would make it! Hoping for 40 more!
Kerri #175041 12-08-2013 07:33 PM
Joined: May 2013
Posts: 134
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Oh my, yes. Not limited to that muscle either. For me, it's more what I have always called the trapezius. If I look all the way to one side or the other, bang! It is not something you can fight through either. Once it cramps, you can't turn in that direction for a while or it does it again. For a while the muscle that attaches at the base of my skull would cramp and it rates as one of the most painful things I've experienced post-tx. If I can't make it stop it takes me to my knees.

I've been given a couple of possible causes the most likely of which is that those muscle were weakened by Tx and node removal surgery. Even though I did well in treatment and am very physically active, I carry my head differently to compensate for the weakness causing strain on muscles that are fairly small and not designed for that kind of stress. I try to pay more attention to my head posture with moderate success.


Dx March 2011 via FNA (49 yrs old)
SCC BoT
HPV+ exact strain unknown
Stage IVa T3N2cM0
Cisplatin x 3, IMRT x 40 (7267 cGy)
One node removed post-treatment (rad dmg)
Clean PET 10/28/11
Swallow therapy
Kerri #175044 12-08-2013 09:09 PM
Joined: Aug 2011
Posts: 596
Kerri Offline OP
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Thanks for your response, Chris. The focus on your posture is indeed one of the best things that you can do for the suboccipital muscles (at the base of your skull), the upper trapezius is one of many muscles that originate in that area. They can be chronically hypersensitive and angry. If the pain is that severe or disabling, you could seek out a consultation with a pain specialist and they may have some treatments for relief, such as botox injections in that area. Physical therapy and/or massage therapy can help, but it will be a chronic problem that will have to be dealt with for many or us.

When mine strikes, the only thing that helps is to throw my head back into extension and gently massage the muscles. People often look at me like I'm having some sort of fit or something, lol! Heat or ice can help, of course, but I'm not too keen on putting ice on the front of my neck.

I was just thinking that it might be some sort of electrolyte imbalance or something like that. It's such a strange place for a muscle spasm. I am a physical therapist and it has me stumped.

Thank you for sharing your experience, Chris. I hope it gets better for you. At least I know I'm not alone in this benign, although nagging problem.

Reading your signature, we were diagnosed with OC at the same point in time, but mine was lateral tongue cancer the first time. It seems that you are doing very well so far! I will keep you in my thoughts in that it was a TKO for you the first time and that is it! Best wishes!

Love in OCF,
Kerri


37 y/o fem at Dx (23 wks preg @ dx on 3/16/11)
SCC L oral tongue (no risk factors)
L partial gloss/MND 3/28/11 @ 25 wks preg
T1-2N0M0; no rads/chemo
Tonsillectomy on 8/6/12 +SCC L tonsil T2-3N1M0 (HPV-)
Treated with 35 rads/7 carbo & taxol (Rx ended 10/31/12), but many hospitalizations d/t complications from rx.
Various scans since rx ended are NED!
Part of genetic study for rare cancers @ MGH.
44 years old now...I wasn't sure I would make it! Hoping for 40 more!
Kerri #175050 12-09-2013 06:11 AM
Joined: May 2013
Posts: 134
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Posts: 134
Kerri, I did forget to add that I had a massage and shared the above info with her. She asked if I could make it spasm at will, which I can. She had pulled up a pressure point diagram of some sort on her phone (I bet you're familiar since you do this for a living). She deeply massaged a point beneath my shoulder blades and the cramping ceased immediately. It's nice to know but I obviously can't reach it. I have a foam roll at home if it's really bad otherwise I just don't turn my head just so...

Last edited by ChrisN; 12-09-2013 06:12 AM.

Dx March 2011 via FNA (49 yrs old)
SCC BoT
HPV+ exact strain unknown
Stage IVa T3N2cM0
Cisplatin x 3, IMRT x 40 (7267 cGy)
One node removed post-treatment (rad dmg)
Clean PET 10/28/11
Swallow therapy
Kerri #175061 12-09-2013 09:49 AM
Joined: Jan 2009
Posts: 476
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Posts: 476
Kerri - John is almost 5 years out and when he yawns he gets them. They stop him in his tracks.


Wanda (47) caregiver to husband John (56) age at diag.(2009)
1-13-09 diagnosed Stage IV BOT SCC (HPV+)
2-12-09 PEG placed, 7-6-09 removed
Cisplatin 7 weeks, 7 weeks (35) IMRT
4-15-09 - treatment completed
8-09,12-09-CT Scans clear, 4-10,6-11-PET Scans clear
4-2013 - HBO (30 dives) tooth extraction
10-2019 - tooth extraction, HBO (10 dives)
11-2019 - Left lateral tongue SCC - Stage 2
Kerri #175062 12-09-2013 10:43 AM
Joined: Aug 2011
Posts: 596
Kerri Offline OP
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Wow,Wanda!

Yes, they do stop you in your tracks. I guess it's small potatoes when it comes to what else we could have. I was wondering if it was common.

Thanks!


37 y/o fem at Dx (23 wks preg @ dx on 3/16/11)
SCC L oral tongue (no risk factors)
L partial gloss/MND 3/28/11 @ 25 wks preg
T1-2N0M0; no rads/chemo
Tonsillectomy on 8/6/12 +SCC L tonsil T2-3N1M0 (HPV-)
Treated with 35 rads/7 carbo & taxol (Rx ended 10/31/12), but many hospitalizations d/t complications from rx.
Various scans since rx ended are NED!
Part of genetic study for rare cancers @ MGH.
44 years old now...I wasn't sure I would make it! Hoping for 40 more!
Kerri #175063 12-09-2013 11:06 AM
Joined: May 2013
Posts: 134
Senior Member (100+ posts)
Offline
Senior Member (100+ posts)

Joined: May 2013
Posts: 134
In order of frequency (most to least):trapezius either side, front of neck, base of skull

In order of discomfort: base of skull, traps, front of neck

But thats just me


Dx March 2011 via FNA (49 yrs old)
SCC BoT
HPV+ exact strain unknown
Stage IVa T3N2cM0
Cisplatin x 3, IMRT x 40 (7267 cGy)
One node removed post-treatment (rad dmg)
Clean PET 10/28/11
Swallow therapy

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