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celluloidheros
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Joined: 23 Aug 2007
Posts: 21
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 Posted: Mon Dec 03, 2007 8:20 pm Post subject: Dilantin decedron etc... |
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Hello, my mom has GBM4 and is in the last stage of her life. thanks for all of your kind words, she is not screaming any more and is resting comfortably.
She is having trouble swallowing and the nursing home wants to stop giving her the dilantin and decadron. I found out that they make an IM form of Dilantin (phenytoin) which is called fosphenytoin. There aree also different types of seizure medications. They also make an IM and liquid form of the decedron.
I'd like to keep giving her the two medicines in addition to her Oxycontin so that she does not have a seizure or swelling.
currently they have cut her back to just Oxy. I did some research and found out about the other forms of Dilantina/decedron. I get the feeling that because she is in hospice that they do not want to give her any more medicine but i'm worried that when the two wear off in her system that she might have a bad seizure like before.
Does anyone have any experience with a person with GBM4 stopping swallowing ?
let me know what you think, CH
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brainman
Site Admin
Joined: 13 Oct 2005
Posts: 3968
Location: Tennessee
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| Posted: Mon Dec 03, 2007 10:06 pm Post subject: Re: Dilantin decedron etc... |
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Hi CH,
My mother had GBM4. Toward the end, she too had trouble swallowing but she was on morphine and had trouble just staying awake.
There are two problems with IV Dilantin; one is a general problem with long term IV and the other is more specifically related to Dilantin. First, long term IVs require a lot of attention to prevent infections. They also have to be moved to new veins periodically. Second, IV Dilantin, if not diluted adequately, burn like H***. It can damage the veins so that the IV needs to be moved more often increasing the danger of infections, not be mention the discomfort to your mother.
Having said that, you should discus your concerns with your mother's medical team. They my have another option or at least reassure you that the other medications will ease her seizures if not prevent them from occurring in the first place.
Best wishes.
_________________
Jim
Site Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendoglioma grade 3, same location.
My Story Part 1: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 2: http://cancerforums.net/viewtopic.php?t=8029
Blog http://jimhawkinsport.blogspot.com/ |
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celluloidheros
Regular
Joined: 23 Aug 2007
Posts: 21
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| Posted: Mon Dec 03, 2007 10:39 pm Post subject: Re: Dilantin decedron etc... |
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Hello Jim, thaks for the response, I was not talking about IV. im was talking about IM and oral. they make IM and oral decedron and IM fosphenytoin. I don't know if the fosphenytoin works the same as dilantin ?
What are the chances that she will have a seizure if they stop the decedron/dilantin ? We were wondering if the deredron was actually causeing her issues as she was screaming the past 3-4 days but has been quite the past few.
She is comfortable now but when the dilantin/decedron wears off I'm concerned.
She has gone into the nursin home and the nursing home doctor is not impressive, i think that he couldn't make it anywear else so he works there or is on call there. I don't think he knows much about GBM4.
Thanks for the care and concern, she does not have long to live, CH
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brainman
Site Admin
Joined: 13 Oct 2005
Posts: 3968
Location: Tennessee
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| Posted: Mon Dec 03, 2007 10:55 pm Post subject: Re: Dilantin decedron etc... |
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CH, it has been one of those days  .
I cannot answer your question about seizures because I do not know if the Oxy will help prevent or at least ease seizures. You need to express your concerns to her primary neurologist or oncologist if you do not trust the nursing home doctor. One of them probably orders her dilantin and is responsible for her care. The nursing home doctor only makes sure that the other doctor's orders are being carried out correctly and addresses any complications that might arise.
_________________
Jim
Site Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendoglioma grade 3, same location.
My Story Part 1: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 2: http://cancerforums.net/viewtopic.php?t=8029
Blog http://jimhawkinsport.blogspot.com/
Last edited by brainman on Tue Dec 04, 2007 6:15 am; edited 1 time in total |
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In
Site Admin
Joined: 18 Jul 2007
Posts: 1375
Location: AUSTRALIA
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| Posted: Tue Dec 04, 2007 5:04 am Post subject: Re: Dilantin decedron etc... |
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CH,
I'm deeply Upset by your post. I have been following your story closely. I'm glad that your mum isn't in pain, or screeming, even if the time is near. I guess we all want peace in the end.
I wish you both Peace. Keep up the loving devotion and special interest in the medications etc. You are such a loving child, that any mother would hope and wish for. You make me proud.
_________________
Thinking of you Inica
*Administrator*
~Nose Cancer~
~Car Accident- Broken Back, Ribs, Spleen
Sternum~
~Continous Cervical Cancer~
My Story-
http://cancerforums.net/viewtopic.php?t=6731
 9 Lives and still kicking |
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ksplat
Super Moderator
Joined: 26 Apr 2007
Posts: 533
Location: Brisbane, Australia
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| Posted: Tue Dec 04, 2007 10:11 am Post subject: Re: Dilantin decedron etc... |
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Dear CH
I too was saddened to hear about your Mother's decline. I'm sure the nursing home would be utilising whatever medication she needs to make her comfortable in her current state.
Very glad to hear your Mum has stopped crying out. This would have been soooo distressing.
I can't help with your query on Dilantin though. I'm currently seeking info on this drug myself. My Bro has had his 1st seizure (yesterday) since May this year. Apparently, his dilantin levels were not right so his surgeon has increased his medication.
My Dad was on IV meds when he was gravely ill because of not being able to swallow. His nursing home care was exceptional & ensured he was very comfortable.
If you're not happy with the Dr I would be speaking up & advocating for your Mother in this case.
My thought & prayers are with you.
Cheers, Aussie Angie.
_________________
Brother diagnosed with GBMIV Feb 07
Treatment: Radiotherapy, Temodal, Gliadel Wafers, Dexamethasone, Keppra, Dilantin, Clexane
Went to our Heavenly Father after a 19mth battle,, 47 years young.
23 Sep 2008
http://cancerforums.net/viewtopic.php?p=19227
"Without Faith We Have Nothing" |
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celluloidheros
Regular
Joined: 23 Aug 2007
Posts: 21
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| Posted: Tue Dec 04, 2007 7:39 pm Post subject: Re: Dilantin decedron etc... |
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hello Jim, inica and angie, I did a ton of research on dilantin, decedron etc.. and found out that there are other form and ways to administer them from Oral to IM to Suppository. There is also phenoibarbital that can be used for siezures.
My mom has stopped eating and drinking which means she has 1-2 weeks at most. it is not a good idea to force food and water on her. It is very sad for us all since when you look at her she was so young, She is changing each day I go and see her.
i was always fairly religious and belieived in a loving GOD but why on earht would he/She do something like this to my mom ? I can see if he wanted her in heaven but what a way to take her.
Thanks again for the support, CH
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brainman
Site Admin
Joined: 13 Oct 2005
Posts: 3968
Location: Tennessee
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| Posted: Tue Dec 04, 2007 9:59 pm Post subject: Re: Dilantin decedron etc... |
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CH, I am very sorry to hear that your mother is no longer taking any liquids or food. It is a very bad sign.
Yes, I am on phenobarbital. There are other options as well but I am not sure which ones really are needed at this point. I would trust her neurologists assessment of her needs.
I continue to think about and pray for you and your mother.
_________________
Jim
Site Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendoglioma grade 3, same location.
My Story Part 1: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 2: http://cancerforums.net/viewtopic.php?t=8029
Blog http://jimhawkinsport.blogspot.com/ |
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In
Site Admin
Joined: 18 Jul 2007
Posts: 1375
Location: AUSTRALIA
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| Posted: Wed Dec 05, 2007 3:44 am Post subject: Re: Dilantin decedron etc... |
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Dear CH,
I believe in Fate/Faith and the power of Love.
I think "IT", He/She, God, Angels-what ever you believe has a good reason for taking your Mum, I believe that there is a purpose for her, a need. Doesn't make you feel any better to see your mum going through this, but maybe there is a deeper reason -why. I do believe this happens to the most Loved, most strongest person here, other wise we'd see "the bad" ones leaving this earth.
Your mum is Loved, she will be sadly and deeply missed. But maybe, just maybe, she is needed else where to give more.....To do more.....To be more.....
Thinking of you in this hard time...Inica
_________________
Thinking of you Inica
*Administrator*
~Nose Cancer~
~Car Accident- Broken Back, Ribs, Spleen
Sternum~
~Continous Cervical Cancer~
My Story-
http://cancerforums.net/viewtopic.php?t=6731
9 Lives and still kicking |
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ksplat
Super Moderator
Joined: 26 Apr 2007
Posts: 533
Location: Brisbane, Australia
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| Posted: Wed Dec 05, 2007 5:11 am Post subject: Re: Dilantin decedron etc... |
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Dear CH
Has the dilantin been stopped yet? If so has there been any sign of seizures? If not I would just monitor your Mum over the next few days & if you feel she needs anti seizure meds then suggest the dilantin/decadron Intra Muscular.
As I said in my previous post nursing homes are well educated in regards to your Mother's failing condition & I'm sure they will be doing the best they possibly can for her. If you don't feel they are then start making some noise! You are the best advocate for your Mother & you have been so deeply involved with all of her treatment & advocacy for her. There's no reason for your input to be ignored now. She is your Mother.
I can fully relate to & understand your questioning your faith in God when you are faced with your Mother's suffering during the last stages of her battle with brain cancer.
I have been through the same doubts & questions myself. Our God is not a punishing God, he is a loving God; when you start feeling those feelings of anger & frustration over this, you should start saying these words over & over-My God is a Loving God-it will ease your pain & anguish. Our God is a loving God & he is watching over you & your Mother & his love & compassion is surrounding you all. The brain cancer & it's terrible effects are a result of this century & all of the advances made in the way we live day to day, resulting in an environment consisting of illness & disease of which we know little about.
Pray to God, pray with your Mum, be close to God with your thoughts, despair, sadness, anger, frustration, you will find he is right by your side. Have you heard the "footprints" story (I will post it here on this thread for you) - beautiful & so true.
I am holding you & your Mum near & dear in my heart & prayers.
May this time bring you closer to the loveliness & beauty of our God.
Angie.
_________________
Brother diagnosed with GBMIV Feb 07
Treatment: Radiotherapy, Temodal, Gliadel Wafers, Dexamethasone, Keppra, Dilantin, Clexane
Went to our Heavenly Father after a 19mth battle,, 47 years young.
23 Sep 2008
http://cancerforums.net/viewtopic.php?p=19227
"Without Faith We Have Nothing" |
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celluloidheros
Regular
Joined: 23 Aug 2007
Posts: 21
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| Posted: Wed Dec 05, 2007 11:03 am Post subject: Re: Dilantin decedron etc... |
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Hi everyone, mom passed quietly this AM, She lasted from 7/17 to 12/5. It was a large tumor that the docs said nothing could stop with our current state of treatment options. Thanks for all of your care and concern, CH
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Thanks, CH |
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brainman
Site Admin
Joined: 13 Oct 2005
Posts: 3968
Location: Tennessee
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| Posted: Wed Dec 05, 2007 1:22 pm Post subject: Re: Dilantin decedron etc... |
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CH my heart is breaking now. I am very sorry about your mother's death. I suspected that it would be soon but not this soon. You remain in my thoughts and prayers. Your mother is at peace now.
_________________
Jim
Site Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendoglioma grade 3, same location.
My Story Part 1: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 2: http://cancerforums.net/viewtopic.php?t=8029
Blog http://jimhawkinsport.blogspot.com/ |
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In
Site Admin
Joined: 18 Jul 2007
Posts: 1375
Location: AUSTRALIA
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| Posted: Thu Dec 06, 2007 8:48 am Post subject: Re: Dilantin decedron etc... |
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CH-
I'm so sorry about your Mum, I know she will be deeply and sadly missed. Your mother feels no pain, no anger, no hurt anymore. But a peace, a healing, a need to be elsewhere.
Peace be with you CH- Stay in contact, we are here for you.
_________________
Thinking of you Inica
*Administrator*
~Nose Cancer~
~Car Accident- Broken Back, Ribs, Spleen
Sternum~
~Continous Cervical Cancer~
My Story-
http://cancerforums.net/viewtopic.php?t=6731
9 Lives and still kicking |
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ksplat
Super Moderator
Joined: 26 Apr 2007
Posts: 533
Location: Brisbane, Australia
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| Posted: Thu Dec 06, 2007 11:17 pm Post subject: Re: Dilantin decedron etc... |
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Dear CH
May I offer my sympathies to you on the passing of your Mother! My prayers & thoughts are with you at this time.
Don't discount your faith now. You will need to call on it now especially.
God Bless.
Aussie Angie.
_________________
Brother diagnosed with GBMIV Feb 07
Treatment: Radiotherapy, Temodal, Gliadel Wafers, Dexamethasone, Keppra, Dilantin, Clexane
Went to our Heavenly Father after a 19mth battle,, 47 years young.
23 Sep 2008
http://cancerforums.net/viewtopic.php?p=19227
"Without Faith We Have Nothing" |
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