Had Seizure- in Hospital 4 days

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Cured
Posts: 581
Joined: Thu Nov 27, 2008 10:53 pm
Location: MO

Had Seizure- in Hospital 4 days

Postby Cured » Mon Aug 03, 2020 5:36 pm

16 months ago I had a seizure; attributed to treatment of metastatic tumor in my brain.
Last weekend my wife saw I wasn’t right and took me to the ER. They admitted me and performed an EEG. I had never had an EEG. they detected “clinical seizures’ which didn’t evidence themselves on the outside; but were clear from the EEG machine and the probes they glued to my scalp.

A question: did my taking the alternate treatment of Fenbendazole cause or contribute to the seizures? I told the doctors that I was taking this on my own and have now stopped. Fenbendazole is made for animals and kills parasites. The myth is that it cures cancer; see www.mycancerstory.rocks

It took almost 3 days for them to complete the sophisticated EEG and to get the drug combo which stopped my seizures. Now they say I am an epileptic and have me taking Kepra and Trileptal. (I hate the anti-seizure meds)

Finally my wife trusted I was stable enough to go to work today. She missed all last week.
7-18 Stg 4
5-08:Stg 3 Rectal: 6/14 Nodes
Ace Surgn Remvd 90%Rectm,lots of Colon-Full Incision
Ileo Rev'd 6 Mos.
Radian+5fu Pre-Surg
FOLFOX 8 Cyc,1-09
Clear Scope 8-17; CEA 2-18
Glory to God! Healed by prayers of many: for 10 yrs
7-18: tumor pressing brain Remove
Met to lung. CEA 6.9
Folfiri
CEA 4.5 after 1 chemo
8rds CEA 3 1.8, 2.3,1.7 then up:32
12rd Folfiri
Avastin ev 2 wks
Seizure Anti-seiz meds work-no driving for 6m
4-20PET: Lng spots=Chemo
2-21 tumr gth =Folfiri
Radiation 7-22

stu
Posts: 1613
Joined: Sat Aug 17, 2013 5:46 pm

Re: Had Seizure- in Hospital 4 days

Postby stu » Tue Aug 04, 2020 11:23 am

Sorry to hear that . Hope things have settled for you . I take it you feel the additional supplements have had an impact.

Hope it’s all improved going forward.
Take care ,
Stu
supporter to my mum who lives a great life despite a difficult diagnosis
stage4 2009 significant spread to liver
2010 colon /liver resection
chemo following recurrence
73% of liver removed
enjoying life treatment free
2016 lung resection
Oct 2017 nice clear scan . Two lung nodules disappeared
Oct 2018. Another clear scan .

User avatar
beach sunrise
Posts: 1034
Joined: Thu Mar 05, 2020 7:14 pm

Re: Had Seizure- in Hospital 4 days

Postby beach sunrise » Wed Aug 05, 2020 7:56 pm

My goodness, you are one tough cookie! I am happy you have come thru this.
8/19 RC CEA 82.6 T3N0M0
5FU/rad 6 wk
IVC 75g 1 1/2 wks before surgery. Continue 2x a week
Surg 1/20 -margins T4bN1a IIIC G2 MSI- 1/20 LN+ LVI+ PNI-
pre cea 24 post 5.9
FOLFOX
7 rds 6-10 CEA 11.4 No more
CEA
7/20 11.1 8.8
8/20 7.8
9/20 8.8, 9, 8.6
10/20 8.1
11/20 8s
12/20 8s-9s
ADAPT++++ chrono
CEA
10/23/22 26.x
12/23/22 22.x
2023
1/5 17.1
1/20 15.9
3/30 14.9
6/12 13.3
8/1 2.1
Nodule RML SUV 1.3 5mm
Rolles 3 of 4 lung nodules cancer
KRAS
Chem-sens test failed Not enough ca cells to test

rp1954
Posts: 1853
Joined: Mon Jun 13, 2011 1:13 am

Re: Had Seizure- in Hospital 4 days

Postby rp1954 » Wed Aug 05, 2020 10:18 pm

How long did you overlap (how much?) fenbendazole (etc) with (how much?) chemo?
watchful, active researcher and caregiver for stage IVb/c CC. surgeries 4/10 sigmoid etc & 5/11 para-aortic LN cluster; 8 yrs immuno-Chemo for mCRC; now no chemo
most of 2010 Life Extension recommendations and possibilities + more, some (much) higher, peaking ~2011-12, taper chemo to almost nothing mid 2018, IV C-->2021. Now supplements

DarknessEmbraced
Posts: 3816
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: Had Seizure- in Hospital 4 days

Postby DarknessEmbraced » Sat Aug 08, 2020 12:28 pm

I'm so very sorry that happened and you're now epileptic.*hugs* I'm glad the medication is helping.
Diagnosed 10/28/14, age 36
Colon Resection 11/20/14, LAR (no illeo)
Stage 2a colon cancer, T3NOMO
Lymph-vascular invasion undetermined
0/22 lymph nodes
No chemo, no radiation
Clear Colonoscopy 04/29/15
NED 10/20/15
Ischemic Colitis 01/21/16
NED 11/10/16
CT Scan moved up due to high CEA 08/21/17
NED 09/25/17
NED 12/21/18
Clear colonoscopy 09/23/19
Clear 5 year scans 11/21/19- Considered cured! :)

Cured
Posts: 581
Joined: Thu Nov 27, 2008 10:53 pm
Location: MO

Re: Had Seizure- in Hospital 4 days

Postby Cured » Mon Aug 10, 2020 4:26 pm

I never overlapped the Fenbendazole with Chemo. I interspersed it. But I’m off of it for the foreseeable future.

Frustrating to me is that most of the seizures are sub-clinical.. Meaning that they were found by the EEG, but weren’t observable. But I can’t really go out due to the pandemic and having cancer puts me at risk. To get close to God we are to humble ourselves; so this all can be for my spiritual benefit.

The worst thing is the stress this has put on my wife. Plus my son now has COVID-19. So we worry about him; but can’t hug him. I did FaceTime him yesterday to personalize our visit.
7-18 Stg 4
5-08:Stg 3 Rectal: 6/14 Nodes
Ace Surgn Remvd 90%Rectm,lots of Colon-Full Incision
Ileo Rev'd 6 Mos.
Radian+5fu Pre-Surg
FOLFOX 8 Cyc,1-09
Clear Scope 8-17; CEA 2-18
Glory to God! Healed by prayers of many: for 10 yrs
7-18: tumor pressing brain Remove
Met to lung. CEA 6.9
Folfiri
CEA 4.5 after 1 chemo
8rds CEA 3 1.8, 2.3,1.7 then up:32
12rd Folfiri
Avastin ev 2 wks
Seizure Anti-seiz meds work-no driving for 6m
4-20PET: Lng spots=Chemo
2-21 tumr gth =Folfiri
Radiation 7-22

stu
Posts: 1613
Joined: Sat Aug 17, 2013 5:46 pm

Re: Had Seizure- in Hospital 4 days

Postby stu » Tue Aug 11, 2020 3:21 am

Hope your son is pulling through ok . Lot of stress on your wife too . Hope she is finding some time to take care of herself .

You take special care ,

Stu
supporter to my mum who lives a great life despite a difficult diagnosis
stage4 2009 significant spread to liver
2010 colon /liver resection
chemo following recurrence
73% of liver removed
enjoying life treatment free
2016 lung resection
Oct 2017 nice clear scan . Two lung nodules disappeared
Oct 2018. Another clear scan .

rp1954
Posts: 1853
Joined: Mon Jun 13, 2011 1:13 am

Re: Had Seizure- in Hospital 4 days

Postby rp1954 » Tue Aug 11, 2020 2:22 pm

5FU with dewormer compounds (e.g. levamisole, abendazole, mebendazole, fenbendazole etc) are tricky on nasty side effects and spacing (or combined) from what I've seen in the literature, and on members from these boards.

10 years ago I found some literature that showed harsh side effects for some dewormers that were occasionally documented with 5FU. When the dewormers were combined with 5FU, these side effects appeared to be class related.

I finally decided we missed the boat on dewormers once my wife started 5FU based chemo in 2010. We are necessarily more cautious about side effects, even Grade 1 (lowest) side effects, since we fundamentally have limited medical support with prior experience for any complications of experimental combinations.
watchful, active researcher and caregiver for stage IVb/c CC. surgeries 4/10 sigmoid etc & 5/11 para-aortic LN cluster; 8 yrs immuno-Chemo for mCRC; now no chemo
most of 2010 Life Extension recommendations and possibilities + more, some (much) higher, peaking ~2011-12, taper chemo to almost nothing mid 2018, IV C-->2021. Now supplements

Cured
Posts: 581
Joined: Thu Nov 27, 2008 10:53 pm
Location: MO

Re: Had Seizure- in Hospital 4 days

Postby Cured » Fri Sep 18, 2020 8:40 pm

My son has recovered from the coronavirus. He had a fever for a week, then was clear. He stayed home per the CDC guidelines.

The OXcarbazepine(trileptal) drained sodium from my body. They had me reduce my water intake. I got them to reduce this drug to half of the amount. I found another Epilepsy doctor; one who believes in benefits of Ketosis and will give more attention to me. Likely adjust meds more often.

I am treating only with Avastin now. On Monday I get a treatment and blood analysis - so will see if my sodium level increased to a safe level.
I only get to see the Nurse Practioner- will consult in person with my new Onc in October.

I feel good! but the meds slow me down. I am anxious to reduce them.
By staying in a Ketogenic state I hope to cure the epilepsy and the cancer.
The doctors I see now respect that some bennefits are possible. Which is progress.

Still prayer is most essential.
7-18 Stg 4
5-08:Stg 3 Rectal: 6/14 Nodes
Ace Surgn Remvd 90%Rectm,lots of Colon-Full Incision
Ileo Rev'd 6 Mos.
Radian+5fu Pre-Surg
FOLFOX 8 Cyc,1-09
Clear Scope 8-17; CEA 2-18
Glory to God! Healed by prayers of many: for 10 yrs
7-18: tumor pressing brain Remove
Met to lung. CEA 6.9
Folfiri
CEA 4.5 after 1 chemo
8rds CEA 3 1.8, 2.3,1.7 then up:32
12rd Folfiri
Avastin ev 2 wks
Seizure Anti-seiz meds work-no driving for 6m
4-20PET: Lng spots=Chemo
2-21 tumr gth =Folfiri
Radiation 7-22

Cured
Posts: 581
Joined: Thu Nov 27, 2008 10:53 pm
Location: MO

Re: Had Seizure- in Hospital 4 days

Postby Cured » Thu Jan 21, 2021 3:50 pm

Months have passed. I’m doing well.
Very happy for my blood counts to be normal: to enable innate immune system to fight off many sicknesses, especially viruses.
I isolate and if out wear an N-95 mask to filter what I breathe. We who have cancer must be extra cautious. When I return from the cancer center I immediately remove my clothes and wash them. I remove my shoes and spray them with alcohol; leave them in the garage for a day. I also spray the floor-mat of the car. -plus wipe off the car seat.
I wash my jacket; or spray and hang it.

Having taken Levitriacetam/Kepra for 6 months I am about to be enabled to drive again. My wife is concerned, so the Epileptologist ordered an at-home EEG. So for 3 days had 24 probes on my scalp, along with a video camera monitoring me. Thankfully no seizures were measured. :) It was nice not to have to stay in a hospital to receive this service; where it is easy to acquire an infection or coronavirus.

Currently getting treatment with MVASI which is a Biosimilar to Avastin; bevacizumab-awwb. Apparently the FDA has approved MVASI and insurance & Medicare will pay for it. I asked to get name-brand Avastin and was told it was not allowed. I receive an infusion every three weeks (began once every 2 weeks). Protein appears in my urine; so we must be watchful so that my kidneys are not injured by this treatment.

Although I feel nothing, I still have metastatic tumors, so can’t forget, nor yet believe that I won’t have to get chemo again. But my new Oncologist is hoping that by June COVID-19 will be less threatening; and that restarting chemo will be less of a worry to me. Next week I get a CT Scan to see how much to be concerned. My family worries as my CEA keeps rising.

God is great and comforting throughout!
7-18 Stg 4
5-08:Stg 3 Rectal: 6/14 Nodes
Ace Surgn Remvd 90%Rectm,lots of Colon-Full Incision
Ileo Rev'd 6 Mos.
Radian+5fu Pre-Surg
FOLFOX 8 Cyc,1-09
Clear Scope 8-17; CEA 2-18
Glory to God! Healed by prayers of many: for 10 yrs
7-18: tumor pressing brain Remove
Met to lung. CEA 6.9
Folfiri
CEA 4.5 after 1 chemo
8rds CEA 3 1.8, 2.3,1.7 then up:32
12rd Folfiri
Avastin ev 2 wks
Seizure Anti-seiz meds work-no driving for 6m
4-20PET: Lng spots=Chemo
2-21 tumr gth =Folfiri
Radiation 7-22

stu
Posts: 1613
Joined: Sat Aug 17, 2013 5:46 pm

Re: Had Seizure- in Hospital 4 days

Postby stu » Sat Jan 23, 2021 3:29 pm

I wish you every success with your scan and hope it brings good news .
So glad you are finding comfort and support .
Take special care ,
Stu
supporter to my mum who lives a great life despite a difficult diagnosis
stage4 2009 significant spread to liver
2010 colon /liver resection
chemo following recurrence
73% of liver removed
enjoying life treatment free
2016 lung resection
Oct 2017 nice clear scan . Two lung nodules disappeared
Oct 2018. Another clear scan .


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