Previous Thread
Next Thread
Print Thread
Page 1 of 2 1 2
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
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
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
U
Uptown Offline
Patient Advocate (old timer, 2000 posts)
Uptown  Offline
Patient Advocate (old timer, 2000 posts)
U

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
D
David2 Offline
Patient Advocate (1000+ posts)
David2  Offline
Patient Advocate (1000+ posts)
D

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
K
Kerri Offline
"Above & Beyond" Member (500+ posts)
Kerri  Offline
"Above & Beyond" Member (500+ posts)
K

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
D
David2 Offline
Patient Advocate (1000+ posts)
David2  Offline
Patient Advocate (1000+ posts)
D

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
U
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
B
Bob Whyte Offline
"Above & Beyond" Member (500+ posts)
Bob Whyte  Offline
"Above & Beyond" Member (500+ posts)
B

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: 3,168
NYC
P
PaulB Offline
Patient Advocate (old timer, 2000 posts)
PaulB  Offline
Patient Advocate (old timer, 2000 posts)
P

Joined: Jul 2012
Posts: 3,168
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
Re: Motor neuron disease - ALS [Re: Brian Hill] #191884
02-29-2016 10:39 AM
02-29-2016 10:39 AM
Joined: Aug 2011
Posts: 596
MA
K
Kerri Offline
"Above & Beyond" Member (500+ posts)
Kerri  Offline
"Above & Beyond" Member (500+ posts)
K

Joined: Aug 2011
Posts: 596
MA
Hi, Flip.
I started having severe cramping / charlie horse type spasms in my neck, under my jaw, and behind my head at the base of my skull (starting about 2 years ago). This past year and after a lot of appeals to my insurance company, I have started receiving Botox injections to these areas. The doctor does one side at a time because of the potential for undesired side effects such as problems with speech and swallowing and head drop. Fortunately one of my sides is much worse than the other so this doesn't bother me. I have to tell you that these Botox injections have been a godsend. I see a doctor who is in the palliative care department of my Comprehensive Cancer Center and he also works in the pain management clinic in the main hospital. The spasms are very common in the areas that I described and that you may be experiencing yourself. It's common for them to be a latent effect radiation treatment to the head and neck. You are not alone and there is help for these spasms which are debilitating to say the least. I hope this message helps you find the care that you need. Please feel free to send me a private message if you need more information.
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!
Re: Motor neuron disease - ALS [Re: Flip] #192046
03-19-2016 05:28 PM
03-19-2016 05:28 PM
Joined: Apr 2011
Posts: 7
FL
C
Connie Offline
Member
Connie  Offline
Member
C

Joined: Apr 2011
Posts: 7
FL
Hi Flip, I haven't been on here in awhile, but came back looking for information and noticed these posts and your comment about the severe cramping in your neck. My husband, an 11-year Stage 4A oral cancer survivor, was also having severe cramping in the neck. The right side of his neck, where lymph nodes and muscle were removed and a nerve cut, had scar tissue running down the side. The skin and tissue in the area was extremely hard and basically plastered down. This caused his head to lean towards that side, affecting his posture, and as I said, he had the severe neck cramping which happened almost every day. Due to another long-term issue that I will go into on a separate post, we decided to try out cold (low intensity) laser therapy on his jaw and neck. We started with a physical therapist through a doctor's prescription and then we were impressed enough with the results that we bought a cold laser machine of our own to use at home. This therapy really softened and loosened up his whole neck area and lower jaw area which had also become very hard. He could barely tolerate being touched on the neck before, and now he is much less sensitive. He tells me that his neck cramps have decreased by 75%, he can turn his head much further, and it is no longer affecting his posture much. This therapy is said to have many effects, one of which is to increase blood flow and improve vascularization. The downside of this is that it is a therapy that isn't widely known in the States yet, and though approved by the FDA for various things, isn't covered by insurance. U.S. chiropractors and physical therapists often have/use these machines, but we have found that MDs generally know nothing about the technology. The machines are also expensive to buy, thousands of dollars, but we have used it 5x a week for 6 months on my husband for many of his various long-term cancer-treatment issues and have had some good results. I am also a BC survivor with arm lymphedema, and the cold laser did a nice job with improving my lymphedema by quite a bit (though it didn't cure it). I also noticed that all my scar tissue from my BC surgery and radiation softened and normalized and loosened everything up quite a bit after my own cold laser treatments.


Connie
Caregiver to Jerry
SSC, BOT T2N1M0
SSC, Uvula, T1N0M0
Neck Lymph Nodes N2B
Stage 4A, age 55
Surg 2/11/2005
No chemo, 33 IMRT
HBOT, 40 dives, 10/2005
Osteoradionecrosis, Antibiotic therapy, 2012 - current
Cold Laser therapy, 7/1/15-Current
Re: Motor neuron disease - ALS [Re: Brian Hill] #192111
03-27-2016 11:57 AM
03-27-2016 11:57 AM
Joined: Mar 2003
Posts: 250
Colorado
A
Anita210 Offline
Gold Member (200+ posts)
Anita210  Offline
Gold Member (200+ posts)
A

Joined: Mar 2003
Posts: 250
Colorado
The cold laser therapy sounds interesting - glad it has given your husband some relief.
I wonder if it could do anything to help with swallowing problems due to radiation.


Husband Dx 12/02 Stage 4 Tonsil Cancer T1N2bM0; surgery, radiation, chemo 1/03 - 4/03.
Re: Motor neuron disease - ALS [Re: Brian Hill] #192116
03-27-2016 05:24 PM
03-27-2016 05:24 PM
Joined: Aug 2011
Posts: 596
MA
K
Kerri Offline
"Above & Beyond" Member (500+ posts)
Kerri  Offline
"Above & Beyond" Member (500+ posts)
K

Joined: Aug 2011
Posts: 596
MA
Hi, Connie.
It's great to hear that you've had such a wonderful result from the cold laser therapy treatment. I'm a physical therapist and I am aware of cold laser therapy however the hospital system where I used to work did not find sufficient evidence to warrant purchasing one. This was about 10 years ago though. At that time we had an inservice from one of the manufacturer's so I don't work all much about how works but I'm glad that it's work well for you I may consider it if I find that my colleague has had good experience with it and there are no contra indications to using it. There are sensors in the Carotid artery and that same area that control your heart rhythm and blood pressure. So I'd be worried about using the device right over or close to those areas. I'll ask one of my colleagues who uses it in her clinic to find out if there any contraindications for using it in such a highly vascularized areas such as the neck .

Thanks for sharing your experience!


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] #192146
04-01-2016 09:07 AM
04-01-2016 09:07 AM
Joined: Sep 2009
Posts: 697
Media, PA
A
AnitaFrances Offline
"Above & Beyond" Member (500+ posts)
AnitaFrances  Offline
"Above & Beyond" Member (500+ posts)
A

Joined: Sep 2009
Posts: 697
Media, PA
I haven't been on the forum for a while but I post today because of a new symptom that my husband is experiencing. Not sure if this is a precursor to a more serious issue.

Within the last 2 weeks, Clark has noticed trembling in his hands which seem to be progressing every day. We both immediately attributed this to the delayed effects of radiation. He is 8 years out from head and neck radiation. We'll be making an appointment with a neurologist at Penn to find out what's going on.

Anyone else out there having similar symptoms? I love to hear from you. Thanks all!


Anita (63)
CG to husband, Clark, 73,
DX SCC 11/07, T4N0Mx, PEG 1/08, RAD, post rad infection 3/08,
HBOT 40 dives, ORN, Surg 11/09 mandibulectomy w/fibular graft.
Plastic Surg 4/10, 12/10, 3/11, 10/11, 4/12, 10/12. All PETS clear,
PEG out 1/11. 6/11 non union jaw fracture
Fractured jaw w/surgery 7/14
Re: Motor neuron disease - ALS [Re: Brian Hill] #192147
04-01-2016 01:16 PM
04-01-2016 01:16 PM
Joined: Dec 2003
Posts: 2,606
Atlanta
U
Uptown Offline
Patient Advocate (old timer, 2000 posts)
Uptown  Offline
Patient Advocate (old timer, 2000 posts)
U

Joined: Dec 2003
Posts: 2,606
Atlanta
Anita, I get something like that I describe as "bouncing" vs tremble. It feels like I have a band aid around my torso and the nerves buzz too.


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] #195188
10-03-2017 06:50 PM
10-03-2017 06:50 PM
Joined: Feb 2006
Posts: 32
boston
D
davew Offline
Contributing Member (25+ posts)
davew  Offline
Contributing Member (25+ posts)
D

Joined: Feb 2006
Posts: 32
boston
Haven't been here for a while, but have many of the same issues posted above 10+ years post treatment. Dr Stubblefield (was at Sloan Kettering in NYC but moved to Orange NJ a few years ago) was a pioneer in this field, and helped me a lot. Maybe his papers will help. Lyrica also seems to help me... Here is another recent paper that can help explain things to your local Dr...

http://www.sciencedirect.com/science/article/pii/S1507136713010079


Re: Motor neuron disease - ALS [Re: Brian Hill] #195193
10-07-2017 05:14 AM
10-07-2017 05:14 AM
Joined: Jul 2012
Posts: 3,168
NYC
P
PaulB Offline
Patient Advocate (old timer, 2000 posts)
PaulB  Offline
Patient Advocate (old timer, 2000 posts)
P

Joined: Jul 2012
Posts: 3,168
NYC
davew,

Maybe we discussed it before, that I've been also following Dr Stubblefield's work for a few years, including papers and video's, which make sense. It's too bad he left MSKCC, and although NJ is close also, it's not a travel option at this time.

He does have a book, "Cancer Rehabilitation: Principles and Practice, 1st Edition" which is out if my price range, like $250 lol. I keep meaning to see if one of the cancer centers here have it in their library.

Glad he helped you, and thank you for the link.


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: davew] #195288
10-23-2017 11:34 AM
10-23-2017 11:34 AM
Joined: Jul 2009
Posts: 1,388
Los Angeles
D
David2 Offline
Patient Advocate (1000+ posts)
David2  Offline
Patient Advocate (1000+ posts)
D

Joined: Jul 2009
Posts: 1,388
Los Angeles
[quote=davew]Haven't been here for a while, but have many of the same issues posted above 10+ years post treatment. Dr Stubblefield (was at Sloan Kettering in NYC but moved to Orange NJ a few years ago) was a pioneer in this field, and helped me a lot. Maybe his papers will help. Lyrica also seems to help me... Here is another recent paper that can help explain things to your local Dr...

http://www.sciencedirect.com/science/article/pii/S1507136713010079

[/quote]

David to Dave (and, long after the initial post, to Brian): thanks for this interesting link. I'm in the process of testing for this very thing, with nerve conduction stuff done last week and an MRI scheduled for Thursday. Everything I was able to understand from that article leads me to believe that it pretty much nails down my issues. I'll write more about it once the MRI results are in and I've had a chance to discuss them with my doctor.


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
Page 1 of 2 1 2

Support OCF


Help OCF

Shop Amazon and Help OCF

Top Posters(All Time)
ChristineB 10,274
davidcpa 8,311
Cheryld 5,260
Brian Hill 4,743
Gary 3,552
Newest Members
Mary49, Rsw, kathyt123, Steven BS, Log Cabin
12008 Registered Users
Forum Statistics
Forums23
Topics17,463
Posts193,365
Members12,009
Most Online306
Aug 21st, 2016
Brag Box
Powered by UBB.threads™ PHP Forum Software 7.7.1