(borrowed from another poster) i think "whateverthehellitis" is back

Randy i hope you dontmind me using your saying. My son Matthew has been throwing up again for the past 24 hours. cant keep anything down. the last 3 times this had happened in the past it turned into a nightmare each time. he was treated for leptomeningeal carcinomatosis starting about 6 months ago with a second dose of radiation along with temodar and it seemed to get rid of the wandering cancer from the last scan reading on Dec 31. The main symptom he had at dx was vomiting and what the doctors called a seizure (still not sure if thats what it was, but im not a doctor so ill go with what Randy calls "whateverthehellitisorwas) nonresponsive, incontinent, he was just gone. the last time it happened it lasted for 3 days but another week or 2 before he was totally back (if that ever even happens). now along with the vomiting he has used jibberish a couple of times. he tried to ask my wife this morning if he could have milk and it took him about 2 minutes of slurring and just using the wrong words before he finally got frustrated and got it right. just as soon as he was done vomiting a couple of hours ago he asked my wife to get him a dr pepper but he meant a paper towel. and he just looks so helpless when hes throwing up, it just tears a hole in my heart every damn time, anyways, he was weened off steroids with his last dose of 1 mg every other day last week. can these be symptoms of coming off the steroids (in whichwe have so desperately tried to get him off. the side effects are starting to get the best of him)? his NO is trying to wait 3 days before doing anything because he also wants him off the steroids but i just have a sick feeling that this is the same thing, the "whateverthehellitis",coming on in a slower manner.

ok so thats my question. Has anyone had similar symptoms coming off the steroids?

matt

No experience with this but hoping it is just a temporary thing.  Nothing worse than watching someone you love vomiting and being sick like this.  I know it's difficult but hang tough.

Hey Matt -

My husband started with severe speech issues and then the non-stop seizures when we halved his steroid dose over the summer.  I know that I share the old Avastin "whateverthe hellitis" story with you in the past.  Ugh, I really don't know what to tell you at this point other than try .5 mg every other day with the dex.  How long has he been on the dex?  Tom really had some major issues from being on it so long those last few months.

I always hated the speech issues...the slurred, garbled mess that he would get so mad that I didn't understand what he was saying.  Does he understand you and your wife?

Hang in there...

-Karyn

Thanks Jon, doin my best to hang tough. it really sucks because i have to go to work, even tho hes there with my wife and she might be top ten in the world in the caregiver category, still, i hate to leave him at home.

Karyn, this is his second stint on the roids with no problems on the first go round. think he stayed on them for 3 or 4 months from his original dx in july of 2011. hes been on them for 8 months now i think with some of the mgs doses as high as 28 mgs a day. that only lasted a couple of weeks then as they weened him down, there was about a month where he stayed at about 8 mgs a day eventually down to nothing. my wife and i had talked about giving him a small dose to see if it would help but it would be against the docs advise, so what the hell do i do? i trust his doctor a whole bunch but dang he doesnt have see him suffer evryday. i bet he slept 22 hours last night and today. wifey had to make him drink something. Matthew sounds exactly like your husband, if he cant get it out without slurring hes gets really angry. from what i can tell, he understands everything were saying so far but he just has that look.... its hard to explain, like hes looking through me when hes watching me talk. it just all feels like a percursor of bad things coming. i hate to be so negative but man! i hate this effin disease. Thanks so much for the input, it really helps to get this off my chest even if i only ask a small question i think i mainly just need a cyber ear to talk to. i have alot of people i can talk to and im sure they mean very well but most really dont have a clue

I really am of the opinion that anyone that works in NO should have to do a month (or longer) training as a caregiver of a BT patient that is symptomatic.  Thankfully, Tom's last crew admitted that although they knew BT's in a clinical setting, they had no where the knowledge that I did. 

I remember when Tom went through his interesting episode after his last Avastin treatment in 2010 prior to his stroke.  That NO - ugh!  I explained what happened, and he asked me if I thought it was a seizure and then ordered another Avastin treatment w/o an MRI.  I looked at him and said, "fine give me your home number, so I can call you at 4am the next time my husband is sick and can't talk and can't understand what I am trying to tell him."  That promptly got an MRI ordered and a hold on Avastin.

At this point I would follow your gut!  If you think that a small dose of dex might help....try it.  If you aren't happy with how he is doing, haul him in to the ER if you have to.

My words aren't all that helpful, but know that I do understand!

-Karyn

On Feb 06, 2013 2:00 AM bpp30m wrote:

Randy i hope you dontmind me using your saying. My son Matthew has been throwing up again for the past 24 hours. cant keep anything down. the last 3 times this had happened in the past it turned into a nightmare each time. he was treated for leptomeningeal carcinomatosis starting about 6 months ago with a second dose of radiation along with temodar and it seemed to get rid of the wandering cancer from the last scan reading on Dec 31. The main symptom he had at dx was vomiting and what the doctors called a seizure (still not sure if thats what it was, but im not a doctor so ill go with what Randy calls "whateverthehellitisorwas) nonresponsive, incontinent, he was just gone. the last time it happened it lasted for 3 days but another week or 2 before he was totally back (if that ever even happens). now along with the vomiting he has used jibberish a couple of times. he tried to ask my wife this morning if he could have milk and it took him about 2 minutes of slurring and just using the wrong words before he finally got frustrated and got it right. just as soon as he was done vomiting a couple of hours ago he asked my wife to get him a dr pepper but he meant a paper towel. and he just looks so helpless when hes throwing up, it just tears a hole in my heart every damn time, anyways, he was weened off steroids with his last dose of 1 mg every other day last week. can these be symptoms of coming off the steroids (in whichwe have so desperately tried to get him off. the side effects are starting to get the best of him)? his NO is trying to wait 3 days before doing anything because he also wants him off the steroids but i just have a sick feeling that this is the same thing, the "whateverthehellitis",coming on in a slower manner.

ok so thats my question. Has anyone had similar symptoms coming off the steroids?

matt

Matt, I am deeply sorry for your family; this goddamn cancer blows monkey chunks. And yes you are welcome to use anything I post.  Give me a call anytime you need someone to talk to, and don't worry about the time.

Randy

On Feb 06, 2013 3:33 PM karynk wrote:

I really am of the opinion that anyone that works in NO should have to do a month (or longer) training as a caregiver of a BT patient that is symptomatic.  Thankfully, Tom's last crew admitted that although they knew BT's in a clinical setting, they had no where the knowledge that I did. 

I remember when Tom went through his interesting episode after his last Avastin treatment in 2010 prior to his stroke.  That NO - ugh!  I explained what happened, and he asked me if I thought it was a seizure and then ordered another Avastin treatment w/o an MRI.  I looked at him and said, "fine give me your home number, so I can call you at 4am the next time my husband is sick and can't talk and can't understand what I am trying to tell him."  That promptly got an MRI ordered and a hold on Avastin.

At this point I would follow your gut!  If you think that a small dose of dex might help....try it.  If you aren't happy with how he is doing, haul him in to the ER if you have to.

My words aren't all that helpful, but know that I do understand!

-Karyn

Karyn, you sound a lot like my wife.  She is more than a woman, she is a force of nature.  Good luck to us all.

Thanks Randy, i have your number in my phone, if i can find an exit off this interstate in which im doing like 400mph with life streaking past me on both sides so fast where i cant even see straight, i will use it. :) seroiusly man, having a sick kid, working 60 to 70 hours  a week on nightshift and 2 baby girls that talk more than a crooked politician (i love em tho) gets overwhelming at times, and i definitely need to give u a call.

Karyn i think that would be a great idea for the doc to actually see what its like at home when things go bad. thankfully today was alot better for Matthew. No slurred words or jibberish. We watched a little of the national signing day for college football on espnu and we talked about it for a couple of hours and i couldnt see anything out of the ordinary unlike yesterday. He actually said his double vision was gone for the first time in months (it only stayed away for about 30 mins but atleast he could see without closing one eye for a few mins). I dont know, maybe i overreacted and its just a stomach bug. About the ER thing, i told my wife if we had to go, to call 911 no matter what. Them heartless people that work behind the desk at our ER threatened to call security on me last time we were there haha! i told them they better send more than one and they better have a taser. It was actually the first time the whateverthehellitwas hit him and i was so panicked taht i just nutted up because nobody would help me. i was screaming from the bathroom that something was wrong and i couldnt believe how long it took somebody to look my way. i finally carried him to the front desk by the entrance door to the ER and sat him down in a chair used for paperwork and the woman behind the desk told me he couldnt sit there. at first, i calmly told her look at him, please help him, something was really wrong. she then told me to go back to the waiting area, thats when i lost it and started to bring the wrath of hell down on them suckers! but luckily a nurse came out with a wheelchair and took him back. so.....the next time we will call an ambulance so maybe we wont have to wait lol.

p.s. it felt really good hollering and showing my ass that day and i meant what i said about more than one. i bet it would have took 5 of them to get me under control that day haha

matt

UGH!  Matt, that had to be horrible.  I was always lucky with our ER and Tom...it's like he seized on demand when we arrived, so they always took us right away.  But I bet going off felt damn good!!

Glad to hear that his speech is better and that you got to watch some ESPN together!

Hang in there! 

-Karyn

On Feb 07, 2013 5:43 PM karynk wrote:

UGH!  Matt, that had to be horrible.  I was always lucky with our ER and Tom...it's like he seized on demand when we arrived, so they always took us right away.  But I bet going off felt damn good!!

Glad to hear that his speech is better and that you got to watch some ESPN together!

Hang in there! 

-Karyn

Matt, your ER visit sounded pretty screwed up.  We were lucky with our ER in Riverside, we walked in the door and were met with professional, wonderful and caring doctors, nurses and support staff.  It was a Saturday night, so it took a while to get to me -- we arrived around 4, give or take a few minutes -- and by nine I had an MRI I had an MRI which revealed the bastard.  I was placed upon a gurnery , which I promptly climbed down from, to comfort my wife, then I told her to go ahead and go home, she wasn't doing herself (or me) any good by staying.  The ER staff and the doctors, nurses and support staff, hell, all of them were professional and courteous.  My compliments to the staff of Riverside Community Regional Medical Center.

As Karyn said, hang in there!  And as my sister tells me, "We are in it to win it!"