#16554 10-28-2004 04:50 PM | Joined: Jan 2003 Posts: 59 Supporting Member (50+ posts) | OP Supporting Member (50+ posts) Joined: Jan 2003 Posts: 59 | It has been over a year or so since I have been active. I am currently at 2 and a half years post treatment and survival of my throat cancer. I was able to return to work at a local John Deere dealer that I previously worked for before my diagnosis, 6 days a week, but currently unemployed again due to the treatment. But that is perfectly OK, no complaints. I am also back to my old weight again, took 2 years but it can happen. I still have mild problems with saliva or lack of, and temporary loss of voice. I am trying to find information on Lheimitte's disorder. To the best of my knowledge it is rare and occurs in 5% of head and neck cancer patients treated with radiation. Also apparently it occurs due to the coating of the nerves at the base of the brain being destroyed during treatment, but I can not find any info on the problems or symptoms this causes. This site was one of the most helpful and informative sites during my treatment and recovery. Thanks!! | | |
#16555 10-29-2004 06:10 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 | JD, It is good to see you at your 2 1/2 year mark! I hope the job thing turns around soon. Have you thought of pursuing Social Security Disability? Just a thought. Here is a link on L'Hermite's Sign or syndrome:: http://www.themcfox.com/multiple-sclerosis/ms-symptoms/lhermittes-sign.htm There are many more available. I hear you on the 5% but I think it is much higher. Here is a link that claims it is a side-effect of Cisplatin as well: http://www.medsafe.govt.nz/Profs/Datasheet/p/PlatinolAqinj.htm I hope these help you understand more about it. Sometimes I think it feels good but have learned to not look down while walking down stairs as it cause a bit of disorientation. 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
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#16556 10-30-2004 03:02 AM | Joined: May 2004 Posts: 218 Gold Member (200+ posts) | Gold Member (200+ posts) Joined: May 2004 Posts: 218 | JDM,
I had that as well. It is gone now but I used to get it driving my car. If I looked down at my feet it would happen.
Went away however. I was told that it was either from RAD or CHEMO so I never thought too much of it.
Ed, thanks for the links.
Take it easy JD, great atttitude.
Later -rh
SCC 1.6cm Right Tonsil 10/3/03, 1 Node 3cm, T1N2AM0, Tonsil Removed, Selective Neck Disection, 4 Wks Induction Chemo (Taxol,Cisplatin), 8 Weeks Chemo/Radiation (5FU,Hydroxyurea,Iressa), IMRT x 40, Treatment Complete 2/13/04. 41 Years Old At Diagnosis
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#16557 10-30-2004 09:22 AM | Joined: Jul 2004 Posts: 188 Likes: 1 Senior Member (100+ posts) | Senior Member (100+ posts) Joined: Jul 2004 Posts: 188 Likes: 1 | I've had it too. Seems to be fading now, but every once in a while it'll really light me up. I found some info through the BDSSite.com websit run by Barry Sebastion, a fellow survivor (7 Years). Try this link to hs website's info on L'Hermiites sign: http://www.bdssite.com/scc/lh.htm Most of what I've read says it's relatively rare, occuring in 3 to 5 % of those who've received high doses of radiation to the cervical spinal chord, and all say it fades in 6 to 9 months. It's particularly disquieting for me, if you can imagine being an elecronics technician with your hands on a couple of test leads in an energized electrical panel. As you look down to see what the meter reads, you get a shock! It took me 3 attempts to figure out it was the L'Hermitte's and not the test equipment. Fun with side effects! ) Hope it's not bugging you too badly. Chances are good it will go away relatively quickly. Good Health Chuck
SCC Stage IV right tonsil T3N3M0. Dx 08/03. Clinical Trial:8 weeks Taxol, Carboplatin then Hydrea, 5FU, IMRT x's 48, SND, Iressa x 2yrs. Now 20 years out and thriving. Dealing with a Prostate cancer diagnosis now. Add a Bladder cancer diagnosis to all the fun. It's always something "Adversity doesn't build character, it reveals it." | | |
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