Steroid treatment (Dexamethasone/Decadron)

I_Promise said:

David
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

Insurance
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 said:

why isn't there a cure
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?

Hello...
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

LHewitt said:

why isn't there a cure
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?

Hi LHewitt.
I just saw this
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 said:

steroids
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

steroids and diabetes
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

cindysuetoyou said:

steroids
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

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

Scottgri said:

I was on doses like that
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.

cancerous brain tumors, and dexamethasone (dexy)
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

mrsptsu2012 said:

Steroid Weakness
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

Can't find how to start a post so can I but in here?
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

Hello

I was placed on dexamethol 1 mg after my grade 3 tumor was removed. It made me crazy hungry messed up my sleep patterns and gave me tons of engery during the day that is my experience with that  steroid