Steroid treatment (Dexamethasone/Decadron)

SandySant
SandySant Member Posts: 4
edited March 2014 in Brain Cancer #1
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
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Comments

  • mrsbe
    mrsbe Member Posts: 57
    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
    winningwaze Member Posts: 3
    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
    SandySant Member Posts: 4

    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

    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
  • cooldad
    cooldad Member Posts: 2
    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
    SandySant Member Posts: 4
    cooldad said:

    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.

    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
    Leroy Member Posts: 2
    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
  • winningwaze
    winningwaze Member Posts: 3

    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

    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
  • mom27liveson
    mom27liveson Member Posts: 5
    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
    marie_childress Member Posts: 8
    Steroids
    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
    Vulgarism Member Posts: 47
    I, too, took Decadron for
    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
    dube03 Member Posts: 3
    very familiar
    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
    mrsptsu2012 Member Posts: 63
    dube03 said:

    very familiar
    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.

    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
  • palmyrafan
    palmyrafan Member Posts: 396

    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

    Weakness
    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.
  • Weakness
    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.

    Dex really helped my wife
    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
    palmyrafan Member Posts: 396

    Dex really helped my wife
    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???

    Appetite?
    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
    RAB73 Member Posts: 27

    Appetite?
    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.

    Anger issues
    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
    palmyrafan Member Posts: 396
    RAB73 said:

    Anger issues
    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?

    Angry for Intolerant Mistakes
    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
    I_Promise Member Posts: 218

    Angry for Intolerant Mistakes
    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

    Steroids are great
    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
    cindysuetoyou Member Posts: 513
    I_Promise said:

    Steroids are great
    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.

    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
  • I_Promise
    I_Promise Member Posts: 218

    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

    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