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Mike's diagnosis


shineladysue

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Mike is home from the hospital now. They did an MRI of the brain and still found all to be normal. That is good news , but he is still confused and at times totally irrational . We don't know if he will get better. The doctor's diagnosis is Metabolic Encephalopathy. My understanding of this is zilch except it was probably brought on by drugs in the system over time and triggered by something, possibly steroids that has caused a chemical imbalance. The doctor is reluctant to say whether this can be reversed or not. He talks about waxing and waning with brain function diminishing. I'm really devastated over this. My hubby goes in and out of confusion and now sleeps a lot due to antipsychotic drugs being given to help. The hardest thing to handle is that his cancer is stable, his breathing better, the pneumonitis cleared up, the shingles cleared up and now his mind is affected from all the treatments. :( If anyone has knowledge or has had someone experience this diagnosis, I would appreciate your input.

It seems that this is another sad note on this board. It is hard to write posts like this, but somehow we hope to help each other by doing it. I'm not giving up on my hubby. I'm asking for prayers from you that he will recover from this. All of you are in my prayers. Thank you for being here.

Love,

Sue

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Hi Sue, I am sorry that Mike has confusion now. I don't know whether Mike is the same case as my dad. My dad was suffered from steriod induced delusion. He was forgetful and he thought and saw something that never exist and real. He became better after taking some psychological medicines and step-off the steriod gradually.

What's the exact confusion that Mike now has? Can you give more descriptions?? Or you can tell the oncologist.

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((SUE))

I don't have any answers for you. I just wanted to send you a cyber hug, and many prayers for you and Mike.

I'm sorry you both are going thru this.

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I am sorry to hear your news. Did you post your question in the ask the experts forum? They may have some insight. Was this diagnosis made by the onc? If so, maybe you want to take him to a specialist to see if there is a way to reverse the condition.

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Hi Berisa,

The doctor is stepping down his steroids and has him on an antipsychotic medicine. It is strongly suspected that this is caused by the steroids. He is taking Risperdal -two small doses in the daytime and a larger dose at bedtime. Mike is fine and then out of the blue he forgets what he is doing and almost how to use untensils or how to walk right. It's like I have to think for him for a while and then he comes back. In the meantime he will tell me that he knows exactly what is going on , but he doesn't . I give him his medicines and a bit later he tells me to bring them to him. It's hard to convince him that we already did that. At times he talks to someone not there and 10 minutes later he can give accurate answers to questions. It's hard to describe, but it sounds like you may understand. Thank you for sharing.

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Sorry to hear about Mike's confusion. Many, many years ago, when my father had cancer and was on steroids, he was also very confused and we had to take his car keys away as he would drive for hours and not know where he had been. The Dr. thought it was also the steroids.

So hopefully, the stepping down of the steroids clears up the confusion

regards,

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Ry,

I am going to put this in ask the experts later. It was the pulmonologist (the one that we have trusted for 4 years) that made the diagnosis. He was quick to say that this is not his field of expertice and he cannot know how it will end up. These events started to happen after medication he had prescribed for shingles and Mike had been on large doses of steroids for his pneumonitis. The pulmonologist did make us appointments with a psychiatrist and a neurologist, but we can't get in until July and August. In the meantime, we are hoping that by stepping down the prednisone (he was once on 60 mg and now on 7mg) and taking the antipsychotic meds he will improve. He did say that he seemed 25% better in the two days of treatment and he felt encouraged by that.

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Sue :

IMO if there hasn't been a significant improvement in Mike's neurological symptoms by now then Famvir has little or nothing to do with causing them. Famvir-induced neurological symptoms should be transitory and, IMO, significantly diminished if not completely gone this many days out even in the presence of renal insufficiency. The only remaining scenario that I can think of where Famvir could be the culprit at this point is if Mike was overdosed. Maybe double check the dosage that he was receiving.

BTW, you mentioned that Mike has been RX'd antipsychotic drugs. As a group, these drugs possess significant anticholinergic side effects. Actually, as a group antipsychotics are loaded with adverse side effects and drug interactions and the onset of tx action can be frustratingly slow. You can do an on-line search and find lists and descriptions of both peripheral and central anticholinergic side effects. Also, be on the look-out for what are called extrapyramidal side effects. These adverse effects could be problematic given Mike's persistent neurological symptoms and general health condition. But, this should be manageable if the drug tx is closely monitored. This is a situation where the drug brought in to resolve original symptoms can create some of the same or similar symptoms. Don't assume that the manufacturers' claims of fewer such adverse effects with their newer class of antipsychotic drug over " traditional " antipsychotic drugs is necessarily clinically significant. This includes Risperdal.

Generally speaking, I agree with the comments that others have made re: corticosteroids.

Hope this helps.

JMO. Good luck.

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Sue,

I had something very similar to what Mike is going through. It is difficult to describe and a nightmare to experience. I didn't know if I would ever come out of it. I thought I was dying. It was from a combination of medications, I think, steroids being one of them. For me, I lost short term memory. I couldn't remember how to make coffee.. It took me half an hour to figure out the steps. I couldn't fill out forms. I didn't know my morning routines...brush teeth, shower, soap, shampoo hair..etc. I had so much physical rehab to do. One appointment for the day. I would look at my appointment slip 50 times during the day knowing that is the one thing that I had to do. And the appointment would come and I would arrive at 2:30 instead of 1:30 and then not know how I could have missed it!! Everyday was like that for months on end. It was pure hell and I had not one doctor to be able to help me. I did see an occupational therapist in a brain injury clinic. The one thing that she did help me with was to affirm that things were not right. She said that I behaved just like someone who had brain trauma. She helped me to write out schedules and to make a design to keep my appointments straight.

It was months before this all left me. It took a long time before I was able to return to work. I was a crying mess. A puddle. But, I made it. I am pretty much back to "normal" now. All of this was from pain medication and steroids due to a spinal cord injury in a car accident.

I think that with time, that Mike will get better..it sounds like we had/have about the same thing. It is a nightmare for him and I am sure that this is difficult for you. I can remember feeling sorry for the people around me because they didn't know how to deal with me. It is a horrible thing. And I am sorry you are going through this. I am glad that you have antipsychotic drugs. I wish I would have had something to take the neurosis away. It is awful.

much empathy,

Cindi o'h

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Dear Sue,

This must be devastating for you and so difficult to deal with. We haven't had anything nearly that bad, but Don does ask me many, many times what time his appointment is and things like that. It kind of makes you crazy, but is scary at the same time.

I'm sure it's extra-difficult since Mike doesn't see or remember that he is doing these things.

I wish I had some answers, and pray that you get some soon.

Love and hugs,

Peggy

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Just to echo what Bill said about the antipsychotic med. Risperdal may be part of the problem...google it and see what you think. I have several clients on risperdal and it needs to be monitored very closely. Good luck!

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So sorry to hear about Mike's "confusion" -- let's hope it's the steroids and that having him off of them will clear it up, as it did in some of the other cases. And, in my exceeding inexpert opinion, the fact that he does emerge out of it sounds hopeful. Will be thinking of you both and hoping that the doctors will be able to clear this up so he can enjoy being stable.

Ellen

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Thank you to Bill and Ry for your information and words of wisdom. It helps to have others input. Thank you Cindi for sharing what must have been a horrific experience for you , but look at you now.... sharp as a tack and most folks would have to get up pretty early in the morning to get one up on you.. :D Besides, you run one hell of a good pub. Thank you to everyone else that has shared your experiences, sent well wishes, hugs and prayers. They helped so much.

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Sue,

I have not been on steroids and the only chemo I took was Iressa for two months. Last summer, I started having short-term memory issues. This was nineteen months out from surgery!

My symptoms included getting lost while driving (I carpool with my husband so days I drove were "interesting" but not nearly as terrifying as it would have been had I driven alone), not remembering why I went to the kitchen - then twenty minutes later not knowing why all the cupboard doors were open!, "losing" words and/or my train of thought while speaking... The final straw for me (and what threw my butt over the edge into a huge anxiety attack and garnered me two weeks off work "sick leave") was when my telephone rang and I couldn't figure out how to answer it! I went to medical and spoke to one of the company doctors and he sent me home, made sure I wasn't driving because it was "beyond dangerous to have someone lost in a chemical plant" and told me that I needed to see a counselor AND my family doctor before I could go back to work.

I had an MRI to see if there were any "critters" hanging out in my head because of my history...nope.

...and so, I ended up seeing a neuropsychologist. The doctor had tests to "map" my brain. The tests showed that I had a bit of an issue with "visual memory" and that the short-term wasn't too hot, either. This is considered white cell damage, and it CAN be fixed. The white cells are the telephone lines between the gray cells in the brain. It IS possible to make new connections if the old ones aren't working, but it takes time.

I'm doing better than I was, but I still lose words during conversations (or can't come up with the right one) and get lost every now and then when out and about.

I would suggest you talk to your family doctor about a referral to a neuropsychologist to have Mike's brain "mapped". The neuropsych explained my issue as cancer being a toxic waste dump in the body. The cellular wastes from the tumor cells are still processed like other cellular waste and take a tour of the ol' brain. Sometimes, they do not-so-nice things while up there, disrupting the transmitters. It IS fixable, but sure is nice to have it confirmed that ya aren't losing what's left of your mind!

Take care, and good luck.

Becky

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Sue,

I totally understand what you're talking about answering the right question with right answer but on the other hand, doing many weird things...

I believe that stepping down the steriods would help a lot. This phenomenon will only be remained for a short time and disappeared very soon.

Prednisone is a crazy med...indeed.

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Sue, I am so sorry to hear things are not going well for you and Mike right now. I don't have anything to inout on the subject but I do want you to know that Im' thinking of you and keeping both of you in my prayers.

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