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Steroid treatment (Dexamethasone/Decadron)

SandySant
Posts: 4
Joined: Mar 2003

Hi,
In October, 2002 my mom was diagnosed with an malignant Asterocytoma. She has been receiving steroid treatment since. The doctors tried to wean her off the steroids once before (in January) which landed her back in the hospital.
Monday she was weaned down to 1 mg per day and she began having terrible weakness in her legs (falling down three times since.)
I am absolutely HORRIFIED that she might land in the hospital again!
I am her only caregiver and I am feeling very desperate to discuss this with someone who has had a brain tumor which was treated with steroids.
I'm not sure whether the falling episodes were due to the weakness and her being on steroids for so long, or if her body is not ready to come off the steroids. Or even what I should expect once she is off the steroids. Will she regain her strength? how much of it? how long it will take? I have so many quiestions and hope that someone who has been through this could PRETTY PLEASE help me to shed some light on this situation.
Your personal experiences with steroids and brain tumors would really help me with both the knowledge and strength to get through this with some of my sanity still in tact.
Any feedback that you can offer would be TRULY appreciated.
Thanks,
~Sandy

mrsbe
Posts: 58
Joined: Jun 2001

Hi there Sandy,
I was on Decadron after my surgury and my husband was told it was to help in preventing the swelling of the brain. I was weened off it very very slowly . As for the stumbling I still do that. Ive only fallen 2 times but it just feels like Im weak sometimes and others that I have to be slow when turning around and walking down hallways. I know that sounds sillly but for somereason being closed in (like in a hallway) makes me stumble from one side to the other. Its something ive learned to live with and i just try to pay attention more to myself and surroundings. I wish you and your mom wellness. Give it time Sandy it takes awhile for the brain to reroute sometimes. MrsBe

winningwaze
Posts: 3
Joined: Feb 2003

Hi,
I'm a 56 year old male diagnosed (actually surgically removed) with glioblastoma multiforme IV of the lower right cerrebellum. Anyway, I am on Decadron and was cut down to 1mg twice per day the first of this week. I am still undergoing radiation treatment and am on 180mg of Temodar daily for 5 days on, 2 off (same as radiation). I get severe cramps in the lower legs (calves) and they are becoming very weak. I started taking a potassium supplement yesterday and eat a couple of bananas a day - hoping the potassium intake will help the cramps. One of the side effects of Decadron is potassium depletion - hence the cramps. I have not yet fallen, but feel without support sometimes, I could. I was told as a rule of thumb, you should regain your strength in the same amount of time that it took to go away. For instance, my treatment is over the first of April, so my strength should return to somewhat normal by the end of May. Hope this helps - it has helped me.

Tom

SandySant
Posts: 4
Joined: Mar 2003

Thanks, both those messages were very helpful. I will start giving her potassium supplements. Good luck to you both with your treatment. Get well soon.
Thans again,
~Sandy

winningwaze
Posts: 3
Joined: Feb 2003

Hello,
It's me again. The bananas and potassium supplements seemed to have helped me. My calf weakness and pain went away after I posted the first message and my legs seem fine now. I am still on 1mg twice a day with the Decadron and have 2 weeks left of radiation treatment - so I assume 2 weeks at least left of the Decadron. I still get a cramp in the calf/ankle area once in awhile and now occasionally get one in the hand/finger area also. But as far as walking, I have no problem with that. Hope your mom is getting along better with potassium supplements.
Tom

cooldad
Posts: 2
Joined: Mar 2003

My husband has been taking Decadron since June 2002 and is just now able to cut back his dose to 4mg per day. Throughout the most of this he has been on doses of anywhere from 8 to 12 mg per day. We have found that while he was receiving radiation, if they tried to cut back on the decadron, he would seizure and end up in the hospital. But after readiation and a hemmorage in the brain he is now able to safetly cut back. In 2 weeks he will be down to 2mg. He has had three surgeries and finally received an Mri that was great news---NO tumor found after the hemmorage. Glioblastoma multiforme 4 is said to never be completely removed. His docs said he was a walking example of a miracle.

SandySant
Posts: 4
Joined: Mar 2003

That is GREAT news!
It's very encouraging to hear that these things are possible. It sounds like your husband has been on the Decadron much longer than my mom... does he have any weakness from beng on the Decadron for such a long period of time? Is he able to walk? Does he have a lot of swelling on the side opposite his surgery?
Can you give me any pointers that may be helpful in taking care of my mom?
Anything you can share would be great.
Thanks,
~Sandy

Leroy
Posts: 3
Joined: Mar 2003

Hi Sandy,
so sorry to hear about your mom. I had a Oligodendro 8 yrs ago. it was surgically removed, and all was good until 8/2002. The Drs decided to take me off klonopin & put me on decatron. That was the scariest time of my life. the steriods made me totally paranoid about everything - especially time.
I have since gone off decatron at my decision with Drs. approval.
I'd see if the Drs. can replace decatron with something a little friendlier.
good luck,
Leroy

mom27liveson
Posts: 5
Joined: Apr 2003

Sandy...I am a survivor of anaplastic astrocytoma and was also put on steroids during treatment. My doctor said that the steroids would help with the swelling on my brain. I also suffered from weakness, but I was told that was a side effect from my chemotherapy. I also gained about 150 pounds while on the steroids, but luckily have lost most of that now. When I started feeling so weak and just blah, I asked my oncologist if I should be taking any vitamins. I thought a B vitamin would help some, but he said no. You could ask your doctor about vitamins though. I also had to have platelets during my therapy, which my mom and her mother were able to donate.

Where is the astrocytoma and what grade is it? By the way, where do you live?

marie_childress
Posts: 8
Joined: Oct 2009

Dear Friend,

My husband is on this medication for brain cancer, however, has not had this issue. It may be due to his age, he is 46? not sure, and she maybe having these issue due to where the tumor is located?? is it on her brain stem? if so, this could be the cause and not the medication. The medication, is good, for swelling, and you might think twice about completely taking her off if she is terminal. My husband is considered terminal, and it helps both with brain swelling and eating. Is she taking seizer medication? My husband Dr.for his brain cancer, originally wanted to take him off, however it didn't make a lot of sense to me, with his tumors rapidly growing. We left him on it.

I hope this helps you, and my peace be with you.

Vulgarism's picture
Vulgarism
Posts: 47
Joined: Dec 2009

I, too, took Decadron for some time, and when a conflict of opinions occurred between my Endocrinologyst and Dr, I was taken off of them. I was getting Cushing's, and stopped abruptly without tapering off, which was about the worst thing I could have done.

As a result, the muscles in my legs weakened, I could only stand for a short time before my knees felt as if they were turning to jell-o and would have to sit down, walking out in public would have to be slow with frequent breaks, and my muscles ached. There was tension and soreness in my neck and shoulders which I'm still only now barely coming away from, and ever since the episode I feel as if I'm not quite as strong. I have begun exercising at my own pace, and gradually re-building my stamina.

Awful stuff. Taper off lowly!

dube03
Posts: 3
Joined: Aug 2011

I read Sandy's comment from March 12, 2003 and had to double check that it wasn't a post that I had just written! My mother is just experiencing the exact same thing. She has reduced her Dex to 2.5 mg/day and started experiencing weakness in the knees/legs after standing up when sitting for extended periods.
I would be very interested to learn how it turned out for Sandy's mom with regard to this 'weakness' problem and if she related it to the steroid being reduced too quickly.
My mom has been on Dex now for 9 months and we would love to get her off it; but the spells she is experiencing lately scared us so we increase the dose back up to 4 mg/day.
Greg.

mrsptsu2012's picture
mrsptsu2012
Posts: 63
Joined: May 2011

My husband was put on steroids in June of this year for a cancerous tumor on his brain as a result of spreading from his lung cancer. By the end of July he started experiencing weakness and it took all the effort he had to walk. He has fallen twice; this may actually been some type of seizure of black out. He is very weak and now has high sugar receiveing insulin twice a day. He also has experienced cardiac enzyme leakeage. Has anyone else experienced these other syptoms with the steroids?
Teresa

palmyrafan's picture
palmyrafan
Posts: 398
Joined: Mar 2011

Actually, I have experienced what we call "steroid psychosis" while on Decadron. Long story short, they had to take me off of it and put me on Prednisone instead, because the massive side effects were too horrendous. I experienced severe headaches, dizziness, fatigue, weakness, confusion, depression and the worst: rage. Uncontrollable rage.

The rage was so out of control I had to have my husband hide the butcher block because I became overly fascinated with it. I also made him take my car keys because I kept threatening to drive off one of the big bridges in Philadelphia. Defintely not good.

My husband got me into see my PCP and he was furious that the E.R. docs (2 separate occastions) had put me on Decadron without even checking my history. All they needed to hear was I had brain cancer and they immediately put me on Dec 40 mgs a day. My PCP was outraged, immediately pulled me off the Dec and put me on Prednisone at a lower dose, 20 mgs a day. I am on the Prednisone 9 months later as a weaning process from the Dec!!!

My PCP made sure that all my specialists at the hospital have it marked on my chart that I should never be given Decadron again. He (and my endocrinologist) both agree taht it is toxic to my physical and pyschological body and that Prednisone works much better for me.

As for the weakness and fatigue? I still have those. I no longer have the pain in my legs that I had while on the Decadron. I do remember it took about 2 weeks (I was on Dec about that time) for the pain to completely leave my legs. Now I am left with weakness that I am still trying to overcome 9 months later.

Please monitor the situation very closely and make sure that the side effects are from the tumors, not the medication. In my (many others agree as well) personal, humble opinion, Decadron should be taken off the market. It is lethal.

DistancerunnerXC's picture
DistancerunnerXC
Posts: 44
Joined: Mar 2011

With no side effects other than the WEIGHT GAIN...
When she was in really bad shape several weeks ago she was not eating at all, drinking little and started passing out in the shower.
I thought it was seizure activity or a stroke and her oncologist said that it was simply dehydration.
He gave her an IV with 20mg of decadron, then prescribed 12mg a day from last week until Sept 21st...and within 48 hoursa she had perked up!
I hope he'll take the dosage down furhter in a few weeks or so, but man, it helped her alot...
Dehydration???? Who woulda thunk it.

I think the dex was a way to get her appetite back???

palmyrafan's picture
palmyrafan
Posts: 398
Joined: Mar 2011

Oh you better believe it. I have heard many people describe Dec feeling like you have a physical hole in your stomach that you constantly need to fill.

I was admitted in January of this year for severe dehydration, acquired over Labor Day weekend while helping our son and his family move into their house. It took 4 months for it to get so severe that I finally collapsed. I didn't recognize the symptoms. However, my doctors told me that I got dehydrated due to an under-active thyroid that was brought on by radiation therapy 15 years ago for brain tumors.

I am still trying to wean down off the steroids and the doctors think it could take a year to undo the damage the E.R. doctors did by putting me on Dec. My neurosurgeon is not a very happy camper either.

Still, I have heard that some people don't have any problems with Decadron. But I've also heard from a lot more that have. The internet is full of Forums, Boards, Blogs, etc. from patients who have been on it and all agree it should be pulled off the market.

RAB73
Posts: 27
Joined: Oct 2011

Wow. I wonder now if Decadron may be contributing to my partner's increased irritablity and anger. He gets Decadron as a pre-med infusion every two weeks as part of his chemotherapy treatments. He was also taking Decadron pills for a couple days after chemo, but stopped that (with his oncologist's blessing) a couple of treatments ago. He still gets the black hole appetite though and over the past few weeks has become for angry an intollerant of any mistakes that I or anyone else makes. Does anyone know how long it takes for the Decadron side effects to dissappear?

palmyrafan's picture
palmyrafan
Posts: 398
Joined: Mar 2011

Yep....that sounds like steroid psychosis (Decadron) to me. That is a great way to describe how I treated my beloved husband while I was on it for 2 days in January and 3 days in February. Intolerant of everything and everyone. Could not believe what would set me off. My husband looking at me the wrong way, not answering my questions soon enough, etc. You name it, it set me off. My PCP quickly recognized the condition and after hearing him swear (never heard that in 9 years of seeing him) and yell at the "incredibly stupid E.R. interns" he immediately pulled me off and put me on Prednisone. Prednisone is the same type of steroid but without all the nasty attitude side effects. I was on 40 mgs of Decadron and they put me on 30 of Prednisone. Never once had the attitude problem or the feeling of feeding the black hole in my stomach that never was satisfied.

As for the side effects? I was only on them for a very short time and they quickly disappeared (within 48 hours) of quitting the meds. Not sure how long it will take for the effects to wear off your partner, but I'm betting they will once the Dec is stopped.

Good luck!

Teresa

I_Promise's picture
I_Promise
Posts: 210
Joined: Aug 2011

My sister has a huge cyst from the radiation and it is causing a lot of swelling and edema. Steroids are buying us time to have the cyst removed. Also she regained function of her left side. I get it that it is only a short term solution. And she should be weaned off shortly after the surgery. Thank God there are dugs that work... this is why we are on chemo right?

She lost a little bit of weight during radiation, so a few pounds are nothing; and she is an athlete so it would take quite a while before the weakness would settle in.

cindysuetoyou's picture
cindysuetoyou
Posts: 508
Joined: Dec 2009

Hi, Julia.

I'm so glad that the steroids have helped Kat and that she is doing better. I hope that the procedure to drain fluid helps her too. I can't remember what thread I read it on, but I believe I've read of others having drainage done too--successfully.

When you first wrote about steroids and the possibility of Kat taking them, I wrote a response about David's experience with steroids, but then I ended up deleting it. I will repost the main ideas.....

David was on steroids (Decadron) after his first brain surgery in 2009. Actually they put him on steroids before he even had surgery---they started him as soon as they saw the mass on his MRI. He took Decadron without any breaks all through the recovery of his surgery and then during radiation, and for a period of time after radiation....I think he tapered off shortly after radiation ended. The only side effects we were ever aware of were a change in his appetite, and a really bad pain in his knee (joint pain?) that required a trip to the ER. He only had that pain one time. The weight gain caused his face to look puffy. He didn't really gain a lot of overall weight, but he is pretty lean normally, so even if he did gain some weight, it wouldn't have been a big problem.

Now David has been back Decadron since July. Except for the increase in his appetite and the puffy face, he hasn't had any noticeable side effects. He is just now starting to taper off. He will have to take a small amount of steroids every month as he does this new chemo procedure.

Between 2009 and now, I'd researched and read a lot more about steroids, and I'd developed some concerns about them. I had especially been impacted by how many people on this site had had horrible experiences with steroids. So I shared my concerns with David's oncology team, and they said that in their experience, they saw more issues with older patients on steroids than with younger ones....David and Kat being in the younger category. They also thought that since David tolerated Decadron well in 2009, that he'd probably do okay again. We really didn't' have a choice anyway....David needed steroids if he was going to be functional. Those headaches were really bad.

I also remember reading on one of these threads about the bad side effects of steroids, and a nurse responded and said if you think the side effects of steroids are bad, you should see what brain swelling can do and what side effects it caused. It made me really think.

Even though I hate the thought of what steroids might be doing to David, I am very, very grateful there is something he can take that will reduce the swelling and give him some relief from those terrible headaches. I guess we had to choose between the lesser of the two evils.

Oh, I re-read your post and I saw the comment about weakness....David didn't really notice a huge difference. He thought might have lost some of his upper thigh strength but he's also an athlete so maybe that helped to minimize the effects. He isn't nearly as active now but we don't think it's because of the steroids. We think it's more from just being tired overall from the second surgery and the chemo.

There's been so much going on with David and I've been totally overwhelmed. He's doing better right now-- but I am just so weary and sick at heart and worn out that I don't have the heart to post about it. Just one thing....the most recent MRI showed a lot of tumor growth, in just three weeks, since the surgery. We are really fighting hard. I feel like our backs are against the wall.

I'll post more about what we have been doing and what we have been going through before too long. Please keep David and our family in your thoughts and prayers.

Love and blessings,
Cindy

I_Promise's picture
I_Promise
Posts: 210
Joined: Aug 2011

Dear Cindy,

I have not heard from you in a while and I have been thinking about David everyday. I cannot imagine what you are going through. I have glimpses here and there. For me it is terror, despair, sadness, anger. Hearing the diagnosis in my head over and over again. New neuro deficits for Kat and no one even suggesting to do a CT ... "oh it is just edema from radiation". Seeing the MRI and how huge the cyst is, how much the structures are compressed, I feel nauseous, I feel sick, I feel like curling up in a ball and crying and crying and crying. I feel like destroying all my china, shattering one plate after the other against the wall. I don't want her to suffer. I want a cure NOW.

David's tumor is growing. I felt icy cold when I read your post. Not what I wanted to heard. But I also know that there is a plan in place. That the Blood Brain Barrier is going to be bypassed. Which chemo agents are they going to use: one or many? There is hope. His tumor shank before. It will have to shrink again. And he is young. He can tolerate the treatment. He can still beat this. Most long term survivors jumped from one treatment to the next, endured many surgeries, and finally conquered the Beast.

Love,

Juliette

cindysuetoyou's picture
cindysuetoyou
Posts: 508
Joined: Dec 2009

Our insurance is denying the treatment again.Apparently it's some sort of political hot potato. Our neuro-oncologist is out of the country until Tuesday and when he returns, he's going to try to get the decision reversed. He already was able to get the insurance to reverse their denial of the intra-arterisl chemo they did on Thursday, so maybe he can get approval for the BBBD protocol. Its knowing that there is a treatment available that could really help him, but is being withheld because of insurance issues--while his tumor is rapidly growing, unchecked---that is making me crazy.

I can relate to wanting to smash things.

I will get back on top of things. I just need time to rally.

Praying for lessings and peace to you, me, and our other friends here on csn.
Love, Cindy

cindysuetoyou's picture
cindysuetoyou
Posts: 508
Joined: Dec 2009

Our insurance is denying the treatment again.Apparently it's some sort of political hot potato. Our neuro-oncologist is out of the country until Tuesday and when he returns, he's going to try to get the decision reversed. He already was able to get the insurance to reverse their denial of the intra-arterisl chemo they did on Thursday, so maybe he can get approval for the BBBD protocol. Its knowing that there is a treatment available that could really help him, but is being withheld because of insurance issues--while his tumor is rapidly growing, unchecked---that is making me crazy.

I can relate to wanting to smash things.

I will get back on top of things. I just need time to rally.

Praying for lessings and peace to you, me, and our other friends here on csn.
Love, Cindy

LHewitt
Posts: 6
Joined: Oct 2011

my beautiful 38 year old daughter was diagnosed with glioblastoma multiforme on September 6, 2011 after being treated for months for an inner ear infection and having a CT scan misread. Her tumor is inoperable as it is in the ventricular fluid between both sides of the brain. Her only symptoms were dizziness and some nausea. I began to notice some short term memory loss and took her to the er again where they did an mri and found her tumor. It is 6 centimeters. She continues to have no symptoms other than the short term memory loss. She has been on the same steroid as mentioned in these posts but started at 12 mg a day and is down to 2 mg a day. She can walk but sometimes it is a little clumsy. The biggest problem she has had is climbing stairs..she has a hard time lifting her legs. She s in week for of full brain radiation and temador chemo.

I will never forget when they told her in the er she had this cancer and I will also never forget when the radiation oncologist told her it was incurable and there was no hope. Her neuro oncologist is wonderful and because of him we continue to have hope.

Why don't we hear more about this cancer and why don't we hear more about fundraisers and research. I refuse to give up hope.

I am so sorry to read these posts as I completely understand the terror and pain. How do we make this more visible and fight for a cure?

cindysuetoyou's picture
cindysuetoyou
Posts: 508
Joined: Dec 2009

Hello....

I am so sorry to hear about your daughter's diagnosis and the pain and anguish you both are going through. My son is battling a different form of cancer: anaplastic oligodendroglioma. He was diagnosed in May of 2009 and he was also given a grim prognosis. He had a craniotomy with 100% resection and then enjoyed over two years with no signs of cancer until July of this year, when we learned the tumor had returned. It's been rough but we are still fighting hard and holding on to hope. He just started a new chemo and we are hoping it's going to help.

When I was first researching everything I could find out about brain cancer, I ran across this site and it was an encouragement to me. I just want to pass the link on to you in hopes that it will strengthen hope in you.

http://livingwithbraincancer.com/default.aspx

My thoughts and prayers will be with you and your daughter. Please continue to post on this site and let us know how you and your daughter are doing.

Love and blessings and peace to you,
Cindy

4theloveofmysis's picture
4theloveofmysis
Posts: 248
Joined: Apr 2011

My heart goes out to you. Our day in ER is forever inprinted in my mind too. I am so sorry that you and your family are going through this. This site helped me. I hope that you will continue to come here for the support and to vent if you need to. Noone really understands except the people that have been there. Praying that your daughter will do well.

cindysuetoyou's picture
cindysuetoyou
Posts: 508
Joined: Dec 2009

Hi LHewitt.

I just saw this comment (posted below) on a thread called "Glioblastoma Grade IV" by someone called "tpot25." I tried to copy and paste it so I could send it to you. I save posts like these and I re-read them when I get discouraged. I hope this helps you too....

This post is about 3/4 of the way down on that thread. I think they were responding to a previous comment near the end of the thread.

Love and blessings,
Cindy

Posts: 2
Joined: Nov 2011
November 1, 2011 - 8:33am
no not everyone

I am still here. I am a 13 year survivor. I was 52 when diaginoised with stage4 glio blastoma multiforma.

cindysuetoyou's picture
cindysuetoyou
Posts: 508
Joined: Dec 2009

I was just browsing around reading some of my older posts. Seems like another lifetime ago. I thought things were bad back then....I'm glad that I didn't know where we would be today.

I want to add a little something to my post about steroids. I had no idea...but taking steroids over a period of time can cause diabetes. Didn't have a clue that could happen. So along with David's myriad of issues, we have to deal with steroid induced diabetes now too. Apparently dexamethesome affects the pancreas' ability to produce or regulate insulin, or something like that. I have to prick David's fingers several times a day and monitor his blood sugar, and he takes metformin twice a day. If his levels get high, it affects his body's ability to heal and to recover from things. And it makes him feel lousy.

We are not able to manage it with diet alone. Our primary care physician told me that I could give David water alone and he would still have issues with high blood sugar--due to the fact that it's steroid induced diabetes. And they said if David were to quit taking dex, he would still continue to be diabetic. The damage has been done.

Unfortunately, that's the least of our worries. But I just wanted to give people a head's up about this possible side effect from steroids. I had no idea....

Love and blessings,
Cindy

frickandfrack
Posts: 1
Joined: Nov 2012

only 2 months of Dex How grateful I am to find this group. My dear TJ has braain tumor since 9/2011 Use all CAM. Hospice Dr. put him on Dex 8/2012 to reduce side effect of swelling.
Now he has diabetes. With all I thought I had read this did not show up.
Just started to get the Doc to let me use Boswellia for several months and reduce Dex.

Now i will do it anyway. Has been used in Europe and India for a long time.
Anyone any info on this
Blood sugar at 350-48 reading 5 days
Now on metformin which has been oked by Life Extension so that gives a bit of relief

TJ is crushed as the tumor showed signs of shrinking and areas that are necrotic.
He also has MM which so far is painless.

After reading here and the other topic areas we both feel very lucky.. The group has been put on several prayer lists
Will pass on any info as to the natural way TJ has survived.F&F

greenmawmaw
Posts: 6
Joined: Aug 2012

it is really hard to decide which is lesser of the two evils sometimes, but your right about the swelling and relief of headaches.

Diana_S
Posts: 1
Joined: Aug 2012

I'm very alarmed at these comments.
My mom is 89 and was diagnosed as a glioblastoma -it was found by accident when they did a CT of her facial bones after a fall. Because of her age, we decided not to do brain surgery.
When she left the hospital they prescribed 48 MG daily (8 MG every 6 hours)
I was not told anything about side effects. She has more appetite than usual, and she's very cranky for most of the day.
I was told that they would wean her off of them gradually, but she has already been on that dosage for almost a week, and she has another day and a half of pills to take.
Did someone make a typo in the prescription?
I'm going to call the PCP tomorrow.

Fight56
Posts: 12
Joined: May 2012

Wow, that is a really high dose! My mum's doc said the maximum amount would be 24 mg!

Scottgri
Posts: 44
Joined: Mar 2012

I was on doses like that after surgery. I coul eat non stop without feeling full, and certainly not my normal personality. Without it though my brain could swollen and caused worse problems.

concerned family
Posts: 1
Joined: Oct 2012

hello all. my name is rob, speaking on behalf of my family. my dad beat milignant mellanoma 35yr ago. he's a tough bird, doesn't like hospitals and too proud to worry the family with medical issues he my have. they tricked him into the hospital about 5 weeks ago, because he was showing sighns of odd speach an other things.

the result from the cat scan were leisions on his brain and lungs. after a course of radiation, and eventually taking him off the dexy, he crashed, and the family was called to his "death bed" tuesday september 25th.

he was "dlerious" when i saw him, not making much sense, and odd behavior; im sure due to part of the meds as well.

when he "came back" he cant walk without help, talking and judgement. i believe there r tumors on his executive thinking, motor skills, speach and more. he has plataued like this. i believe the dexamethasone is keeping him alive, after all the doctors thought he would pass on sept 25th.

i have read this thread, and i am aware of many of your concerns about the dexy. my family is blessed to have these days with my dad, an every day after is a miracle according to our doctor. my understnding is the dexy is partialy restricting the growth of the tumors, witch is mainting his ;although deminished, health and communication.

can any one directly relate to my family, or give us any advice?

p.s. his dose is 4mgx3 an 2mgx1 daily

bless u all, and stay strong

Dianap1
Posts: 1
Joined: Apr 2013

I was prescribed this steriod since have a brain tumour and the side effects were horrendous. 

However, the Patient Information leaflet does not cover clearly psychotic episodes as far as I can see.  They were so bad there were life threating for me, my family and friends had to do shifts and were with me most of the time.  The tried to be here most of the time, but that wasn’t possible and in-between it almost destroyed my family seeing me like this.  I could not be contained to the house involved other people outside the house, although my husband was at home for hours I would wander the house trying to find him.  I was left to my own devices on this drug and new if I looked I would find others who had experienced the same.  I am being told that it is very rare, yet in hospital I meet two other people in a short time and now know my next door neighbour had a very similar experience many years ago, but was hospitalised with a security guard and nurses to stop him throwing himself out of a window whislt trying to battle good and evil. 

I was not offered another drug but as I say had one episode after another.

 

 

GrannieAnnie's picture
GrannieAnnie
Posts: 6
Joined: Dec 2012

I have GBM IV and weaning off Dex. Last night I had bad headache, sickness and runs. Is this a normal side effect or did I just overdo the juicing thing to get fruit and veg into me?

Also if you have GBM listen to this -
Anafranil (Clomipramine)

http://www.bbc.co.uk/iplayer/episode/b013xsm1/Treating_Tumours_Old_Drug_New_Tricks/

Annie x

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