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Motor neuron disease - ALS #190376
07-28-2015 01:47 PM
07-28-2015 01:47 PM
Joined: Mar 2002
Posts: 4,743
Boise, ID and Portland, OR
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Brian Hill Offline OP

OCF Founder
Brian Hill  Offline OP

OCF Founder
Patient Advocate (old timer, 2000 posts)
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Joined: Mar 2002
Posts: 4,743
Boise, ID and Portland, OR
So I have come across a couple of patients that have developed an unusual problem and I am thinking that the odds that two head and neck radiated patients developing this relative rare and deadly issue is more than a coincidence. So I am putting this post up to hopefully attract the attention of any others that have heard or know someone with a similar experience. Both people have asked me not to use their names.

14-16 years out of treatment they have been diagnosed with motor neuron disease, commonly known as ALS, or other equally terrible and deadly names and syndromes, that there is no treatment for and causes a drawn out degradation of mobility, then speech and swallowing, and finally respiration where subsequently death occurs. So cane to walker to wheelchair to PEG tube to loss of speech, assisted breathing to death. Time from diagnosis to death is usually under five years, but about 5% make it out to ten, but severely incapacitated. Not a pretty disease, and medicine doesn't know much about it. It can be upper or lower body or both (these are both). In the literature there is good data on patients who have had radiation near the pelvic region for testicular and prostate cancer years later developing lower MND/ALS that is progressive. I am thinking that while this is not widely looked at in people that had head and neck radiation, that scatter radiation or radiation that was not highly targeted (before IMRT) would impact the cervical spine, just like it did the lumber spine in the cases documented, and if that were so upper and lower body MND would be the result. It is just too much a of a coincidence that two head and neck cancer patients in otherwise normal health, years out from treatment would have nerve degeneration and become ALS patients. So any one who has heard anything about this, please reach out to me, we may have stumbled onto something that is very important; but two data points do not make the argument. Radiation induced motor neuron disease.


Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.
Re: Motor neuron disease - ALS [Re: Brian Hill] #190380
07-29-2015 06:34 AM
07-29-2015 06:34 AM
Joined: Dec 2003
Posts: 2,606
Atlanta
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Uptown Offline
Patient Advocate (old timer, 2000 posts)
Uptown  Offline
Patient Advocate (old timer, 2000 posts)
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Joined: Dec 2003
Posts: 2,606
Atlanta
Based on some data I reviewed presented by Van der Sluis, Wolfe, etal, even cumulative doses of 45 Gy and higher with breast cancer patients receiving radiation from the sternum up were candidates for motor neuron disease diagnosis. Thank you for bringing this up, Brian. I won't be shy, I have delved into this since 2007 and I have even tried to encourage Wolfe to reopen the study in hopes of identifying biomarkers to be able to try and predict outcomes like mine before the treatment plan is final. England is doing this and I tried to get involved as a patient advocate.

As you stated, not enough data points to generate interest. By the way, I happen to be a person that has battled this malady since 2007, while the majority of those studied were beyond 10 years, as high as 20 years out. If anyone comes forward and you can get any action from the medical community, please include me in any way possible. One question I have searched for an answer to is how do we measure an adequate supply of lower motor neurons? If damage to the anterior horn is truly the truly the etiology, there has to be someone willing to research this.

Thank you for this post!


SCC Stage IV
BOT primary
T2N2bM0
Cisplatin/5FU x 3
40 days radiation at 4 sites
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.
PLS 02/13
COPD 01/14
Intermittent CHF 6/15
Feeding tube NPO 03/16
VFI 12/2016
ORN 12/
Osteoporosis 01/2018
Heart attack 06_2018

Living life LARGE with no quit in this guy!
Re: Motor neuron disease - ALS [Re: Brian Hill] #190677
09-03-2015 04:02 PM
09-03-2015 04:02 PM
Joined: Jul 2009
Posts: 1,388
Los Angeles
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David2 Offline
Patient Advocate (1000+ posts)
David2  Offline
Patient Advocate (1000+ posts)
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Joined: Jul 2009
Posts: 1,388
Los Angeles
Brian, thanks for posting. It's certainly potentially worrying for anyone who's undergone radiation. I hope everyone here at the forum reads this.


David 2
SCC of occult origin 1/09 (age 55)| Stage III TXN1M0 | HPV 16+, non-smoker, moderate drinker | Modified radical neck dissection 3/09 | 31 days IMRT finished 6/09 | Hit 9 years all clear in 6/18 | Radiation Fibrosis Syndrome kicked in a few years after treatment and has been progressing since | Prostate cancer diagnosis 10/18
Re: Motor neuron disease - ALS [Re: Brian Hill] #191214
11-18-2015 04:21 AM
11-18-2015 04:21 AM
Joined: Aug 2011
Posts: 596
MA
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Kerri Offline
"Above & Beyond" Member (500+ posts)
Kerri  Offline
"Above & Beyond" Member (500+ posts)
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Joined: Aug 2011
Posts: 596
MA
Dear Brian and Uptown,

Thank you for bringing this to light, though it is a tough subject to broach. I am very sorry to hear that there are people suffering from such a horrible disease, especially after battling OHANC. Brian, I am so pleased to learn the breadth of current research with which you are continually keeping pace.

Uptown, you have had such a rough go of things, but you hold up your chin and have an amazingly positive attitude. Your willingness to help others is evident in this forum. So, thank you.

It certainly makes sense that radiation scatter could affect the central nervous system and cause upper motor neuron disease. I do think that it is vitally important for any OHANC patient to report any symptoms or findings related to neurologic symptoms such as abnormal reflexes that one may see with a stroke or other post-treatment sequelae. Also, neurovascular symptoms such as those that could be linked to stroke or transient ischemic attacks to the brain.

I will keep my ear to the ground on this one and follow this thread.

Take care,
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!
Re: Motor neuron disease - ALS [Re: Brian Hill] #191262
11-24-2015 12:56 PM
11-24-2015 12:56 PM
Joined: Jul 2009
Posts: 1,388
Los Angeles
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David2 Offline
Patient Advocate (1000+ posts)
David2  Offline
Patient Advocate (1000+ posts)
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Joined: Jul 2009
Posts: 1,388
Los Angeles
For 3 years or so I've been dealing with progressive sensory polyneuropathy. My docs tell me it's idiopathic. And in my case, not having had chemo, the cause will likely never be known, nor is there a cure. The first neurologist I consulted was of the opinion that my radiation treatments were not causative. But still one wonders. It's a drag but I'm still glad to be here.


David 2
SCC of occult origin 1/09 (age 55)| Stage III TXN1M0 | HPV 16+, non-smoker, moderate drinker | Modified radical neck dissection 3/09 | 31 days IMRT finished 6/09 | Hit 9 years all clear in 6/18 | Radiation Fibrosis Syndrome kicked in a few years after treatment and has been progressing since | Prostate cancer diagnosis 10/18
Re: Motor neuron disease - ALS [Re: Brian Hill] #191264
11-25-2015 08:24 AM
11-25-2015 08:24 AM
Joined: Dec 2003
Posts: 2,606
Atlanta
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Uptown Offline
Patient Advocate (old timer, 2000 posts)
Uptown  Offline
Patient Advocate (old timer, 2000 posts)
U

Joined: Dec 2003
Posts: 2,606
Atlanta
David, I would be nore than happy to hear about all that you are experiencing and to help yountry and find comfort in as many ways possible. Feel free to message me or email me any time. Much of what you are experienced is well documented and comfort in many ways is possible. You are now entering the phase of aftercare that can be the worst for some of us and treatable in the short term. It takes a lot of time, effort and perseverance.


SCC Stage IV
BOT primary
T2N2bM0
Cisplatin/5FU x 3
40 days radiation at 4 sites
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.
PLS 02/13
COPD 01/14
Intermittent CHF 6/15
Feeding tube NPO 03/16
VFI 12/2016
ORN 12/
Osteoporosis 01/2018
Heart attack 06_2018

Living life LARGE with no quit in this guy!
Re: Motor neuron disease - ALS [Re: Brian Hill] #191266
11-26-2015 12:47 PM
11-26-2015 12:47 PM
Joined: Mar 2002
Posts: 4,743
Boise, ID and Portland, OR
B
Brian Hill Offline OP

OCF Founder
Brian Hill  Offline OP

OCF Founder
Patient Advocate (old timer, 2000 posts)
B

Joined: Mar 2002
Posts: 4,743
Boise, ID and Portland, OR
David2 - cervical radiation exposure is a well documented cause of poly radiculopathy. Obviously everything in your body is down stream from that part of your spinal cord, and peripheral neuropathy is the first thing people notice. But the problem is that only recently did we have oral cancer patients with head and neck radiation living as long as they are (because of their HPV etiology and its 30% survival advantage). So most of the radiation oncology people, and neurology people are not aware this is happening, and know little about it. Your EMG test will show what is occurring, people that do not understand this causation will call it idiopathic. You may start to notice in leg muscles and other places you can see small patterns of twitches in the muscle when relaxed. These tiny nerves firing randomly in a pattern around your muscle are called florid fasciculations. They are seen commonly in people developing motor neuron diseases, and are very typical of ALS. (Don't let anyone down the road misdiagnose you with that based on any of this.) A MRI of the whole spine will initially show fibrotic tissues surrounding the actual spinal cord itself, and that fibrosis is the initial problem. Please continue to post about your experiences here as I am trying to collect enough patients to get a paper done about this, so that we can expose the treating medical community to the knowledge, and hopefully get better IMRT mapping near the cord to eliminate this issue in future patients when possible.


Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.
Re: Motor neuron disease - ALS [Re: Brian Hill] #191270
11-27-2015 08:58 AM
11-27-2015 08:58 AM
Joined: Jun 2007
Posts: 595
Vermont
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Bob Whyte Offline
"Above & Beyond" Member (500+ posts)
Bob Whyte  Offline
"Above & Beyond" Member (500+ posts)
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Joined: Jun 2007
Posts: 595
Vermont
Brian, I have been treated for the last 8 years for Parkinson's disease, some say it could have been caused by Rads treatment and others say from my USMC service but the only agreement is, is that it started after I finished treatment. There is no family history. Mine as of now only effects my left side. Hope this gives you something to think about.Semper[Fi Bob


Bob age 57, non smoker,non drinker, ended treatment on 11 Nov 2007 and started back to work on 29 Nov 2007. Veterans Day 2012 the Battle was lowered, folded, Taps was played and the Flag buried as I am know a 5 year survivor. Semper-FI !!!
Re: Motor neuron disease - ALS [Re: Brian Hill] #191416
12-17-2015 03:28 PM
12-17-2015 03:28 PM
Joined: Jul 2012
Posts: 3,165
NYC
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PaulB Offline
Patient Advocate (old timer, 2000 posts)
PaulB  Offline
Patient Advocate (old timer, 2000 posts)
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Joined: Jul 2012
Posts: 3,165
NYC
Not sure if this relates or helps, but I had a few EMG/Nerve studies, and see a neurologist on a regular basis only recently, and do have brachial plexopathy, cubital tunnel syndrome, spinal accessory neuropathy, sensory polyneuropathy, myopathy, and a few others related like toe drop, head drop, reflex loss, paralysis, atrophy, balance, falling issues, and such, which I just judge as one in the same, and needed no tests to tell me so.

My issues started or were exacerbated after chemo only in 2009, which resulted septic shock, cachexia, other major side effects, including paralysis for almost a year from the waist down, and then others like brachial plexopathy were from the numerous neck dissections when nerves, muscle, and carotid artery removed, and radiation totaling over 200Gy to the same area. I don't have carotid blockage shown from the 3-D ultrasound, thankfully.

I specifically asked if I had lower motor neuron disease, and was told no, but said I have so many complications it's difficult to say which is the cause.


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






Re: Motor neuron disease - ALS [Re: Brian Hill] #191883
02-29-2016 07:10 AM
02-29-2016 07:10 AM
Joined: Sep 2009
Posts: 60
MI
F
Flip Offline
Supporting Member (50+ posts)
Flip  Offline
Supporting Member (50+ posts)
F

Joined: Sep 2009
Posts: 60
MI
In my case my EMG shows neuropathy. The Dr performing the test attributed it to the chemo and radiation. I have had severe cramping in my neck ever since my radiation to my tonsil, which has intensified in the 6 years since treatment.


Flip
_________________________________
Age: 54 SCC Tonsil + 3 nodes
Radiation and Carboplatin
Treatment 4/1 - 6/7/2009
No surgery, no PEG
Never smoked
Drink socially (brew my own beer and love wine. A bottle of scotch lasts me a couple of years)
CT 11/4/09 No sign of envolvement in Tonsil or nodes
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