| | Joined: Jan 2012 Posts: 6 Member | OP  Member
Joined: Jan 2012 Posts: 6 | My husband started having seizures/convulsions about a month after finishing 33 days of radiation to the (R)tonsil and uvula.
He has had numerous tests done, but the doctors can't find anything. Has anyone experienced this? It has been going on for almost 6 months now. I almost think that the doctor's think we are lying. This is so frustrating! UGH!
Kelley
(Caregiver)
Last edited by KelleyChristine; 01-17-2012 09:13 PM.
| | | | | Joined: Mar 2002 Posts: 4,918 Likes: 65 OCF Founder Patient Advocate (old timer, 2000 posts) | | OCF Founder Patient Advocate (old timer, 2000 posts)
Joined: Mar 2002 Posts: 4,918 Likes: 65 | Has he had a full body PET scan since the end of his treatment?
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.
| | | | | Joined: Jan 2012 Posts: 6 Member | | OP Member
Joined: Jan 2012 Posts: 6 | No he hasn't had a PET scan at all. | | | | | Joined: Dec 2010 Posts: 5,264 Likes: 5 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | | "OCF Canuck" Patient Advocate (old timer, 2000 posts)
Joined: Dec 2010 Posts: 5,264 Likes: 5 | He should have been scanned at the three month mark. If not then for sure at six months... How do they know whether it has spead or if there are and hot spots to keep an eye on? Some one will correct me if I'm wrong but I believe that 3 months post surgery a scan is the standard, then from that point on it varies, depending on dr. And hospital protocol. His seizures could be related to the radiation, I'm not sure what angle they set the machine at but I'm sure there's a certain amount of spray radius that hits beyond the designated area. I've personally not had trouble with seizures - but I would maybe film it the next time and make an appointment to see another dr. Particularly if this one/group isn't listening. It could also be related to chemo, though technically only certain chemos are supposed to cross the blood brain barrier (protective mechanism within your body that prevents damaging substances from getting to your brain). I wouldn't wait too long to have this checked out, and most importantly push for a scan. Good luck!
Last edited by Cheryld; 01-18-2012 06:38 AM.
Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
| | | | | Joined: Jul 2011 Posts: 945 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jul 2011 Posts: 945 | Kelley
Sorry that you and Mark are having this problem. If he has not done so, he might want to see a neurologist who specializes in these problems. Best wishes for a better new year.
CG to husband - SCC Tonsil T1N2M0 HPV+ Never Smoker
First symptoms 7/2010, DX 12/2010
TX 40 IRMT (1.8 gy) + 10 Cetuximab
PET Scans 6/2011 + 3/2012 clear, 5 year physical exam clear; chest CT's clear of cancer. On thyroid pills. Life is good.
| | | | | Joined: Jan 2012 Posts: 6 Member | | OP Member
Joined: Jan 2012 Posts: 6 | Thank you Cheryl & Maria=)
I will insist on a PET Scan... The doctors gave us such little information prior to all this. Mark's oncologist said "I need to see you once a month for the first year following TX." On his 3rd month F/U he changed it to once every two months. Oh so frustrating! It was hell just getting a doctor to care, one even said that his throat pain was from his bad posture.
Thank you for ALL the information!
I got a specialist appointment for the end of the month with a neurologist. Mark has seen her before, but she did not know that he was continuing to have seizures/convulsions; his primary care MD said they were communicating UGH!
Keeping the Faith,
Kelley
PS: Not one MD EVER mentioned a PET Scan.
Last edited by KelleyChristine; 01-18-2012 07:19 PM.
| | | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 10,507 Likes: 7 | Kelley, I hope the convulsions turn out to be nothing serious. Im sorry but I havent heard of others with this problem. I am surprised that a PET scan has not been done yet. The very best place to go for treatment is a large cancer center where they treat many cases of oral cancer per year. It doesnt sound like where your husband was treated is following the guidelines for oral cancer treatment. Im very glad you have found OCF to help you with info.
If you need further info on cancer centers let me know or it is listed on the main OCF pages. There is also links for NCI guidelines there as well.
Best wishes!
ChristineSCC 6/15/07 L chk & by L molar both Stag I, age44 2x cispltn-35 IMRT end 9/27/07 -65 lbs in 2 mo, no caregvr Clear PET 1/08 4/4/08 recur L chk Stag I surg 4/16/08 clr marg 215 HBO dives 3/09 teeth out, trismus 7/2/09 recur, Stg IV 8/24/09 trach, ND, mandiblctmy 3wks medicly inducd coma 2 mo xtended hospital stay, ICU & burn unit PICC line IV antibx 8 mo 10/4/10, 2/14/11 reconst surg OC 3x in 3 years very happy to be alive  | | | | | Joined: Jul 2011 Posts: 945 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jul 2011 Posts: 945 | Hey, Kelley
Mark's neurologist is going to be severely annoyed at the GP. Maybe find a new GP.
One thing to remember is to always get copies of your test results. If your neurologist is not in the same system as the oncology stuff (so she can easily review Mark's records online), go ahead and collect everything you can to bring to the neurologist appoinment. Put it all in a notebook, along with your questions. AND the NCCN guidelines that Christine mentioned.
If Mark's neurologist is anything like my riding buddy neurologist (your basic spitfire) she will shake things up and get to the bottom of it.
If you have any other oncology meetings, bring the notebook. It adds credibilty. Best wishes.
Last edited by Maria; 01-19-2012 10:19 AM. Reason: typos
CG to husband - SCC Tonsil T1N2M0 HPV+ Never Smoker
First symptoms 7/2010, DX 12/2010
TX 40 IRMT (1.8 gy) + 10 Cetuximab
PET Scans 6/2011 + 3/2012 clear, 5 year physical exam clear; chest CT's clear of cancer. On thyroid pills. Life is good.
| | | | | Joined: Jan 2012 Posts: 6 Member | | OP Member
Joined: Jan 2012 Posts: 6 | Maria,
Thank you so much for your kindness. I really needed some refueling. This has been such a rough battle that I think my fire had dwindled to a flicker, but you have me ready to persevere!
FYI: Mark found a lump the size of a large olive in his neck on Friday night. I am trying to remain positive in front of my husband, but I'm really scared=( I'm calling his oncologist in the morning.
Thank you "everyone" for your support.
Kelley | | | | | Joined: Jul 2011 Posts: 945 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jul 2011 Posts: 945 | Hi, Kelley
sorry I dodn't reply earlier - life intervened. Let us know how the oncologist call went.
Maria
CG to husband - SCC Tonsil T1N2M0 HPV+ Never Smoker
First symptoms 7/2010, DX 12/2010
TX 40 IRMT (1.8 gy) + 10 Cetuximab
PET Scans 6/2011 + 3/2012 clear, 5 year physical exam clear; chest CT's clear of cancer. On thyroid pills. Life is good.
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