my husband finished treatment on tuesday and they are keeping him in hospital untill he can swallow the meds ,they expect him to be out early next week.A IS ABLE TO LEAVE THE HOSPITAL FOR A FEW HOURS AND HAS BEEN USING HIS BICLCLE GOING BACK AND FORTH TO THE HOSPITAL ! SINCE THURSDAY THEY HAVE TAKEN HIM OFF DEXAMETHASONE (THEY THOUGHT HE WAS OFF IT FOR THE LAST 16 DAYS).HE IS ON 2M TWICE A DAY AND MY GP SAID THIS STEROID IS VERY VERY STRONG ,HE IS ALSO TAKING MORPHINE FOR THE PAIN.HAS ANYONE TAKEN THIS STEROID AND FOUND IT HAS EFFECTED THERE MIND /BEHAVIOUR . IF SO HOW DID IT EFFECT YOU OR THE PERSON YOU CARED FOR.WHEN YOU STOPED TAKING THE STRROID WHAT HAPPENED AND HOW LONG WAS IT BEFORE YOU RETURNED TO YOURSELF.THE CANCER, THE TREATMENT ,THE DRUGS, I KNOW ALL OF THERE THINGS HAVE A LIFE ALTERING EFFECT BUT I HAVE LOST MY HUSBAND WHO WAS FINE BEFORE HE STARTED TAKING THE STEROIDS AND THEN LOST ALL REASON , I KNOW HE IS NOT WEEL AND I AM TRYING TO HELP .I HAVE OUR GP BUT THERE IS VERY LITTLE WE CAN DO .I SPOKE TO THE REG ETC,WHEN HE NEEDS ME THE MOST HE HAS DECIDED TO NOT TALK ,NOT COME HOME ETC AND I AM POWERLESS TO DO ANYTHING.HE IS NOT SPEAKING TO ME DOES NOT WANT TO SEE ME ETC MY FAMILY ARE GREAT AND I HAVE LOTS OF SUPPORT ,BUT I AM SO WORRIED FOR HIM SO UNCONSOLABLE AND HOPE IT WILL ALL END SOON AND I WILL GET BACK MY HUSBAND.

Oh Dex...not a fan of that drug. Dexamethasone, or Dex as it's known in the doping community is a powerful synthetic glucocorticoid steroid that has powerful anti-inflammatory effects and is an immunosuppressant.

Dex is about 27x stronger than the naturally occurring Cortisol and roughly 7x stronger than Prednisone. It is sometimes administered in conjunction with some chemotherapies to counter side effects of drugs used to treat brain tumors and also as a direct chemotheraputic drug hematological malignancies or in combination with other drugs. In the doping communities Dex is used for athletic performance enhancers as it's a powerful anti-inflammatory.

I'm not a fan of this drug really mostly due to it's really harsh side effects which include:
Stomach upset, increased sensitivity to stomach acid to the point of ulceration of esophagus, stomach, and duodenum

Increased appetite leading to significant weight gain

A latent diabetes mellitus often becomes manifest, glucose intolerance is worsened in patients with pre-existing diabetes

Immunsuppressant action, particularly if given with other immunosuppressants, such as cyclosporine, may allow bacterial, viral, and fungal disease to progress more easily and can become life-threatening; fever as a warning symptom is often suppressed.

Psychiatric disturbances, including personality changes, irritability, euphoria, or mania

Osteoporosis under long term treatment, pathologic fractures (e.g., hip)

Muscle atrophy, negative protein balance (catabolism)

Elevated liver enzymes, fatty liver degeneration (usually reversible)

Cushingoid (syndrome resembling hyperactive adrenal cortex with increase in adiposity, hypertension, bone demineralization, etc.)

Depression of the adrenal gland is usually seen, if more than 1.5 mg daily are given for more than three weeks to a month.

Hypertension, fluid and sodium retention, edema, worsening of heart insufficiency (due to mineral corticoid activity)

Dependence with withdrawal syndrome is frequently seen.

Increased intraocular pressure, certain types of glaucoma, cataract (serious clouding of eye lenses)

Dermatologic: Acne, allergic dermatitis, dry scaly skin, ecchymoses and petechiae, erythema, impaired wound-healing, increased sweating, rash, striae, suppression of reactions to skin tests, thin fragile skin, thinning scalp hair, urticaria.

Allergic reactions (though infrequently): Anaphylactoid reaction, anaphylaxis, angioedema.

For some the "weight gaining" properties of this drug is thought to be a benefit to cancer patients however the weight gain is not lean muscle tissue, as another side effect of the drug is muscle atrophy due to it's catabolic influence, but rather adipose tissue (fat) and water retention. This type of weight does little to help a cancer patient as there is a direct relationship between survival rates and lean muscle mass percentage.

Anyway there is the "long" version of the drug, some notable interactions:

NSAIDs and alcohol: increased risk of gastrointestinal ulceration

Mineralocorticoids: increased risk of hypertension, edema and heart problems

Oral antidiabetic drugs and insulin: antidiabetic therapy may have to be adjusted.

They don't usually take you off high dose steroids cold. They usually decrease the dose gradually. You may have to deal with the change in behaviour for a little while. Hang in there.

A HAS BEEN ON DEX SINCE AROUND THE 8TH MAY TO DECRESS THE SWELLING OF HIS TONGUE AFTER ABOUT TWO DAYS HE STARTED TO BECOME VERY IRRATATED ,HE WAS ONLY SLEEPING FOE 2/3 HOURS AND HAD LOADS OF ENERGY AND WAS WORKING ON 10 DIFFERENT PROJECTS HE KNEW AND JOCKED ABOUT THE EFFECTS THE DEX WAS HAVING ON HIM PHYSICALY AND ALSO MENTALY AND ASKED ME TO SAY IF I NOTICED HIM BECOME EXCITED TO "NOT USE THE DISCO VOICE" SOON ALL WENT INTO OVERDRIVE .I LOOKED UP AND ALSO TOLD MY GP ABOUT MY CONCERN ABOUT THE EFFECT DEX WAS HAVING ON HIS MENTAL WELLBEING AND OUR GP AGREED THAT HE WAS VERY HIGH AND SPOKE TO THE REG.THEN THE TEAM HAD HIM ON THE DEX FOR THE CHEMO TO REDUCE THE NAUSIA .AS I SAID IN MY LAST POST THE REG THOUGHT HE WAS OFF THE DEX FOR THE LAST TWO WEEKS,A DOES NOT DO DRUGS AND EVEN TAKING ASPRIN HE WOULD BE CARFUL WITH.HE WAS DRINKIND BEER AS HE THOUGHT HE WOULD NEVER BE ABLE TO TAST IT AGAIN ,SO WAS TRYING ALL THE BELGIUM BEERS (WHICH I SURE DID NOT HELP).BEFORE HE WAS TOLD HE HAD C HE ONLY HAD 2/3 BEERS ON A FRIDAY WITH HIS FRIENDS.SORRY FOR GOING ON ,FOR THE MONTH BEFORE A STARTED HIS TREATMENT AND BEFORE THE DEX HE WAS GREAT AND I KNEW 3 WEEKS INTO THE TREATMENT AND FOR A FEW MONTHS POST TREATMENT WOULD BE VERY HARD ON HIM BUT WE HAD EACH OTHER OUR KIDS AND LOTS OF THINGS PLANED TO MAKE IT EASER HAVING THIS TERRIBLE THING I KNEW WE COULD DEAL WITH BUT THE EFFECTS OF THE DEX ON MY HUSBANDS MENTAL HEALTH AND ACTIONS HAVE BEEN AWFUL AND I DIDNOT KNOW WHAT TO DO.HOW LONG BEFORE A COMES DOWN FROM DEX AND BEGINS TO ACT RATIONALY?WILL HE BECOME DEPRESSED?WHAT CAN I DO TO HELP HIM . A THANK GOD IS DOING EVERYTHING IN HIS POWER TO GET OVER THIS TREATMENT AND TO GET RID OF THIS CANCER ,HE IS NOT A DANGER TO HIMSELF OR OTHERS .FINALY HE HAS NOT MENTIONED TO ANY OF HIS FRENDS OR FAMILY THAT HE IS NOT TALKING TO ME AND STAYING IN A HOTEL AT THE WEEKEND ,HE HAS SAID NOTHING TO ANYONE ABOUT THIS WHICH IS NOT UNUSUAL AND WOULD BE HORRIFIED IF I SPOKE TO THEM SO I HAVE TO PRETEND THAT ALL IS WELL.JUST SPOKE TO OUR GP AND HE SAID WOULD CHECK WITH REG THAT THEY MONITOR HIS C(cant think of name) levels as dex will swithc off the bodys natural ability to produce and then when come off must check levels in body as can be open to infection and get adersons .

Im concerned about your husband being off by himself in a hotel. Has the doctor begun weaning him off this medication? Sounds to me like his reaction to it makes it something that should be addresses immediately so he isnt a danger to himself.

Best wishes!!!!



PS....Please dont write in all capitals as it makes things harder to read.

I told the doctor/reg in the hospital on wednesday that I had checked with the nurse and my husband was still on dex (the day before i visited the hospital and spoke to the reg and he told me "A" was off dex for two weeks and was on nothing that would interfer with has mental state)I am speaking to my GP,family and "A" sister who lives in america and they all feel that there is nothing I can do now .Because he is sick and just finished this terrible treatment and still in hospital and telling no one what he is up to (I didnot know he was let out of hospital at weekends as friday night he leaves the hospital and meets up with his frends and the last two saturdays he has come home for an hour and arranged to meet kids in bar to watch match etc .its just when i saw him taking his food for the tube last saturday that i thought and asked him if he was out for the night and he would not answer)my son who is home on thursday hopefully will be able to find out what his plans are.he is not well enought now I think to have a rational converstion with and in his mind he is right and doing the best thing for his recovery.There must be someone out there who allso went of the railon dex? or one of the meds they were given .
i will phone the hospital and check if he is there ,he does not answer my text or emails,and as I said he has not mentioned any of this to anyone.
Sorry about the capitals I thought it would be easer to read.When I type in this box how do i make the box the size of the full scream so I can see what I am typing.

Seana,
when you hit the reply button, use the Preview Reply button - the area you have to type in will be the same size, but you will be able to review what you have just written below.

When my mother was on prednisone she was very irritable. In the States, here, the phrase 'Roid Rage (for steRoid Rage) is used to describe the reaction to drugs like dex. You are definately not alone with this difficulty. If the rest of A's family can keep an eye on him while he is being irrational, it might be best. Keep his doctors up to date on all that is going on.

As care giver to care giver, I wish I could give you a hug. It is hard enough to bear the worry of the disease and treatment, but to add in the emotional pain of the irrationality and rejection must be horrible. Please, please, kept telling yourself it is the dex talking, not your husband. You will have him back in the near future, but I am so sorry this happened in the first place. Thoughts and prayers for you and A heading from Ohio to the other side of the world.
Maria

Maria,
Its is all such a mess and trying to be loyal and not say anything to anyone is so hard .I have my family ,"A" sister and my GP plus a counsellor who I got which is all helping ,its just the worry,the not knowing what to do and afraid to of doing the wrong thing and the unbelievable sadness and guilt.I phoned the hospital and he is in over the weekend which is great so I dont have to worrie about that,they said he had gone out which is fine maybe he is visiting a friend.I will call in tonight and will know if he wants me to leave and will go,however I have been doing this and I think it really upsets him so I will email him again before I go to check but he does not seem to be looking at or answering my emails which I keep nutural and just tell him news of kids and that i am praying for him and sign off take care ,love seana.I will visit the reg in the hospital on monday and talk to them.I think when my son comes home on Thursday things will be better and I will know more of his plans.
thank you all.I wish I was talking and asking for advise on his diat,exercize ,things that would make his recovery better and not this which I feel is not related to BOT cancer but brought on by the meds he was given.
seana
P.S Have a great holiday and I know this will all end and hopefully I will be laughing with my husband about this in a years time.

Hello - you're married to this man even if he doesn't talk to you go see him and make him listen. Ultimately you've done all you can - I do understwnd it may be the drugs or him trying to deal with the after effects, and reality, but what he's doing is still not right. Do not abandon him, but you have children to worry about.. Tell him as much, tell him you're there for him, then back off and focus on you. Spend time at home doing what you want and with friends and family. You can't make him do what you want - so let him be. Eventually he may find his way back, but a some point you have to leave it up to him.hugs

I text him and said i would call in for a few minutes tonight and he replied "very contentand would like to stay that way so would prefer if you didnot call".He is not well and I can do nothing and trying to talk to him and explain would send him into a rage he does not have the ability now to think stright ,there is no logic.I just have to let it be and when he is well then I can sort this all out.I just thought there would be others whoes partner became awful and they would be able to say it can and dose happen and this is the course it will take.He is not well now so I can not at this time tell him he is being crual ,unreasonable ,unstable,manic etc as he does not have the mental ability to grasp and understand this .His reality and ours are wourlds apart ,unfortunitly I am so cought up in it emotionaly ,that it takes me time to become calm and understand what is happening , and the fear, hurt ,worry ,sadness etc all dont help me seeing things rationaly.I am fine now and will not worry.I will speak to the team and let them know what is happening and our GP and hope things settle.
seana

thank you for your help and advise

Seana,
your description of your reality and his being miles apart is exactly right. It is very hard to see things rationally when one is distressed, but I think you are actually doing a good job of it at this point. Best wishes and keep posting!
Maria

I was down with my mother as my 3 kids have gone to canada with my sister and my oldest son is in greese till thursday.I want to do as little damage as possible and am trying to get as much help as I can in making the right choices and causing as little trouble for my husband for when he get better as this is not a normal situation .i try to be as rational as possible I am so hurt and then feel guilt as I am not the one going through this and I think I must be stronge as I am in a much easies space but i have been really upset,emotional,unconsoable etc while trying to be rational and not make mistakes .I have never been on a site for help before ,I have not talked about my personal life and am very positive ,happy,frendly but do not like to talk about things that are personal as I feel it is disloyal and not for me to say ,but I am in a disprate situation now and am trying to be careful and think I have been ok not great but not too bad .I was afraid as I put my name on this site and it stoped me saying too much but i think anyone who is on here is only on for the right reasons and I really need any advise or help I can get from people who I know really want to help and they maybe have more experience,insight,and understanding then I have.I am so sorry that I am here with not an physical problem but the emotinal side of things and feel I should be on another site for thsi but I think you have all gone through what my husband has gone through and I need to have your views,thoughts,advice.
thank you for your help
seana

Seana,
I want you to breathe a little bit now and then and relax. If you are a religious person, do like my mother did, and say to yourself, let go, let God. If you are not especially religious (or even if you are), the Buddhist meditation and breathing techniques will help you to quiet your thoughts and think more clearly. When my husband was first diagnosed, my brain just started racing, and I called my brother-in-law who is a great practitioner of mediation. He sent me a book, and said to do the breathing exercises, following my breathe as it goes in and out of the body. I will look up the book's title if you like!
Have to do some chores now but will check back later. You are not alone in this struggle.
Maria

From reading your posts, it certainly sounds like a corticosteroid effect. Excitability and not sleeping are regularly reported. For most patients it is mild and presents with a sense of well being. Unfortunately, your husband (or you, as the one bearing the brunt of it) seems to be one of the unlucky ones who has progressed to irritability/paranoia and downright nastiness.

However there may be other considerations � When I first read your post I wondered if �A� might have something else also affecting him.

Might �A� also be reacting to the shock and stress of fighting a life threatening disease?

In my early posts I described my Alex as being a tantrum throwing 2 year old and myself as being his jailor/tormentor. He said later that he knew that he was saying and doing hurtful things but could not stop himself. I believe this was his reaction to the pain, shock and terror of what he was experiencing (as well as the pain medications, chemotherapies etc).

I also think he was trying to protect both of us in some strange way by trying to stop me from seeing him at his worst. When he was with me, he couldn't pretend he didn't have cancer and my presence forced him to consider the reality (plus I was a bloody great bully). Alex didn't want anyone to see him so vulnerable. He rarely allowed any of his friends to visit him either and deliberately made light of the seriousness of his condition when he did see them.

The insight that Alex shared afterwards(don't you just love a man who shares!) was that he resented me coming in being all positive and proactive. He felt it was his job to be the protector and provider and he felt he had failed. So when I bounced into hospital and "fussed" over him (his perception not mine), it drove him crazy which caused him to lash out at me. Think about the kid in the playgound who falls and scrapes his knee, starts to cry and then hits the kid closest to him just because he is there? . Now I didn't understand it at the time and fought back telling him that no matter how sick he was he had no right to be nasty. Unfortunately, this was not my finest hour.

Your way of doing things - treading softly and trying not to "fuss" and going with the flow, will help you get through this.

For yourself, remember this. It is not personal. No matter how awful it feels and how personal the attacks are, it is not personal. He is hurting and scared (you know that) and wants to lash out at the other kid in the playground.

Cry your tears here on this forum, find a counsellor, keep a journal, consider anti-depressants. All these things are used by us caregivers to cope . You are normal and your fear, hurt and guilt happen to all of us from time to time. But it does get better.

When you get the other side, your husband will acknowledge your support and if he doesn't - slap him and remind him that you are a goddess!!

Karen
PS for the record, Alex is back to his old considerate self and it started happening the day they told him he had no evidence of disease (NED) at 3 months post treatment.

Seana, you really are doing a good job and you've been taking care of so many things, it's certainly understandable that you could get stressed. You emotions are as important as your health and can affect each other so you do need to try and relax.
As Maria notes, the Buddhist meditations and breathing are a great help. My son and I both did them while he was surviving and we still do them even now. You could start with taking 10 slow deep breaths, while thinking only of how the breaths are going in and going out. You might find that other worrisome thoughts come into your head and when this happens, just tell them to cut the "chatter" - then start over with the deep breaths. (Sometimes when I can't sleep I have to start over several times!) As a caregiver, you are a very important part of your husband's getting through everything he has to deal with. You need to take care of yourself so that you can have the physical and emotional strength for the tough caregiving job you are doing for your husband.
I think that CherylD has good advice for you when she says:
<<Ultimately you've done all you can - I do understand it may be the drugs or him trying to deal with the after effects, and reality, but what he's doing is still not right. Do not abandon him, but you have children to worry about.. Tell him as much, tell him you're there for him, then back off and focus on you. >>
A long time ago, when my son was being "difficult" during his recovery, a very wise lady on this forum told me to put my "nurse from Hell hat" on and tell him what he needed to do. So I did and it worked just fine. I think the change my son saw in me that day is what did the trick. I hereby pass on my "nurse from Hell hat" to you in case you want to use it.

You are doing the right thing. Just leave him. He may come to the realization that he truly needs you and come back, but perhaps he won't. It is true that drugs and steroids can cause this and there are a few people who's partners have gone through this - cm morris on here recounted her husband's behavior and it sounded similar. He was terminal at the time and one of the stages of grieving is anger but I believe at some point towards the end he did com around. It's hard to tell if it's drugs or the emotional trauma, laying name and anger at th world for what's happened, but it sounds to me like both at work here. Regardless as long as he knows you are there for him that's all you can do. Take time for you and yor children now and leave him be. Hugs

klo,CHERYLD,christineB,aNNE-MARIE,mARIA,eRIES,iAM007

I hope I have not forgot any of you,reading your replys and even thinking of them now makes me cry,trying to stay calm and rational which I think under normal cercumstances I am I now find myself having to fight to stay together and a kind word or thinking of my husband and what he is and will go through hurts.I found a web page "American Cancer socity" where they were talking about side effects of Dex ,and lots of the people were talking ablot the change in personility,anger,etc .Befor "A" took this drug I was the best in the world and we were fine ,tow days into taking it he started to act a little off and then he exploided one morning and wanted a divorse I was hopeless etc and the anger etc,I talked our GP as I have told you and he said he was as high as a kite and spoke to the team at the hospital .IT went from bad to awful and now I am waiting till he comes back to earth.My GP is going in for tests (for himself) tomorrow so I will not phone him .I will meet with "A" team tomorrow and go over again how these drugs have effected him and check that they are bringing him down slowly .I have seen my Father and my Mother-in-lay lossing it in hospital with the meds they put them on even antibiotics when you are old can effect your mental state and only because "A" pushed me away and told me not to visit I was so upset and took it personaly ,If I had been rational I would have been in constant contact with the hospital ,checking his drugs daily and this could all have been sorted earlier but I became Parilized in fear .I am back to myself now and hope I do not mess up again .I will do the breathing ,I am a RC and have a brother a priest (an only brother who is the best in the world and advising me well)I have found a consellor and am meeting her again on Thursday,I am very lucky I have great support and a really close family.Thank you all for your help.I will let you know how things are going and hope soon that all will have settled down and that I am asking simple questions like " best foods to settle a dodgy stomach".I hope my experence will help someone else and that the minute they see their husband acting mad they go stright to the doctors and then keep on top of things and watch everything that their husband is taking and keep talking to the doctors("A's" thought he was not on dex for past 14days and he is on 4m a day!).
seana

Hi, Seana
glad that you have your dear brother to help and consul you. I sent you a PM (private message) - click the flashing email icon by MY STUFF near the top of the screen.
Maria

Seanna - It's good you are getting some help and support. You make a very good point at the end of your post about keeping on top of things and watching everything that your husband is taking. At one point in my son's treatment he was on so many different drugs and he kept telling he was keeping up with taking the meds but when I watched him a little more closely, he would sleep thru some of the meds or take too much or miss them. I had to make up a spreadsheet with all the meds and how often and how much he was supposed to take. I made two copies, one stuck on his refrigerator and told him he had to check off as he took his meds and note how much. I also put the doctors names and phone numbers and names of the office nurses, too - for whenever I called. It's a good idea to keep a record of everything that goes in to his stomach and what comes out, too. Some meds can cause constipation. If you read the prescription bottles you might see what side effects there are so that you can ask the doctor about if necessary. Take care of yourself, too and check back here to let us know what's happening.

Thank you Maria for the PM ,I tryed to reply to this but when I put in your name or member number it would not accept .How do you send a PM.I went to the Hospital and the Reg said "A" was off the dex now and they were discharging him today.
I went to his ward and spoke to nurse and she said they expected him to leave once doctors did the rounds.Meet "A" at the lift and told him doc. had said been discharged and could I give him a lift back home ,he cant talk much but said no and didnot want to talk and left me and went down stairs.Phoned hospital and they told me he is on way home so if he is comming back he should be here in 10 minutes.Ann-marie in the past with my family we have been so careful with the meds but because andy wount let me in ,and the state I was in I just accepted that I could do nothing.I think I am back to myself now so hopefully will be on top of things as much as i can.
seana

Seanna, I'm so sorry you have had such a rough time of it. You certainly deserve better treatment. You've been doing so much, but I'm glad you are feeling a little better yourself. Take care of You and your children. BTW - to send a PM, just click on the person's name in the box that appears to the left of the screen where their message is and you will see a selection that includes "Send a PM". Click on that and it should get you to where you can write your message.

Hi, Seana
besides sending a PM (as Anne-Marie described), you can reply to the PM I sent by going to
My Stuff > Messages
Click on the Message I sent, and then click the Reply box. Enter you message, and then hit Submit. We will each get a copy of the message so that we can remember our conversation!
Maria