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Dad's at Home Now


Pamela

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Well, Dad went home from the rehab hospital on Saturday. He's had a rough time, and he still can't walk, even with a walker. He has trouble getting from the bed to the wheelchair. For the past 4-5 weeks, he's been withdrawn, confused, fatigued. All he wants to do is sleep. He is lucid most of the time, but sometimes he says weird things. I went to see him a week or so ago, and he told me he didn't know how to read (which certainly isn't true) and there were times when he was definitely in another world.

He's obviously depressed, but he's already taking 100 mg of Zoloft with no effect. The confusion is something else again. The doctor told us last week that he thinks Dad has radiation damage from the WBR. I read another post here about radiation necrosis, and so I researched that. Once again, I felt like we had been blindsided. We had no idea this could happen to him -- and we still don't know if it has.

I can't tell you how it felt to see my strong, determined dad now a tired, confused little old man in a wheelchair. The worst part is knowing that nothing he has suffered so far is a direct result of the cancer itself! His doctors thought he would die soon so they weren't the least bit cautious with the medications or treatments they gave him. It is appalling how often we have encountered doctors who have the attitude, "He's going to die anyway. It doesn't matter when he dies or what kills him."

6 months after being diagnosed as Stage IV with brain and spine mets, he still has no pain whatsoever and does not need oxygen at all. However, he is in a wheelchair, weak, confused, depressed -- because of the medications and not the cancer. It wouldn't be so bad if the meds were chemo to fight the cancer, but these were meds taken to counteract the side effects of other meds which then required additional meds to counter those side effects, etc., etc., until he was on 12 different meds -- NONE OF THEM NECESSARY! All he's been taking for the last 2 months is Zoloft, Pepcid and a stool softener.

Just venting. When Dad was diagnosed, all he wanted was to go fishing and enjoy what time was left. He still hasn't gone fishing. Now he doesn't even want to do that anymore.

Sorry if this upsets anyone. I'm just really down today. The fight isn't over, but we're very discouraged.

Pam

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Guest NowakowDA

That's what this board is here for. Let it all out. Sometimes, just being able to let go helps. I know that I would have gone totaly nutts if I hadn't found this place.

Decadron, and its generic off spring are a bunch of powerful drugs. They can have very scary side effects. Add the fact that my Mom is 79 and already showing some signs of fuzzy thinking. Finally, throw WBR in the pot and stir. What comes out can be frightening. Mom's PCP (primary care provider) Michael Servilla, told me that the Dexamethason can make everything else worse. Mom had her invisible friends and she even had a 200 year old dead indian come visit her.

The worst time for me was when it started getting dark outside. I knew that Mom's spells would start after dark,and I would have to try and stop them as quick as I could. If I couldn't stop her episode then, it "was show time". Now, thanks to Dr. Michael's little "happy pills", Risperdal, Mom's episode are much more controlable. If I could only get some pills like that for my self.

Don

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Ask about a different antidepressant...my personal experience with Zoloft is that it left me emotionally ''flat''...very strange way to feel. No highs, no lows, no reaction or interaction with anything or anyone. And very, very tired.

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I did a tour on Zoloft, too...strange, same reaction as Fay... I took it for "issues" at work and the boss from Hades and WAYYYYYY too much stress. Funny, started those pills and I HEARD deadlines zippin' past and didn't care one fig...(had to get THOSE switched out fast!)

Sounds like a good first step...

Take care,

Becky

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Hello Pamela,

I'm very sorry to hear that your Dad is not himself. I hope they can give him something to make him feel better. Maybe he does need oxygen. Lack of it used to make my friend act goofy. When they check your oxygen, it may be okay than later the level could be dropping. That happens sometimes. If he does get better he better enjoy some fishing if he can. Hugs and prayers!

Sharon

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I had the same treatments and I have not had those types of problems. I ended up with thrush in my mouth and that is pretty much it. Right after diagnosis I thought about taking and anti-depressant, but all I really needed was sleep so I opted for Ambien.

Deb

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Pamela,

I am so sorry your dad is having such problems. Medication are powerful things and mix that with the WBR and you've got a big problem. I am hoping that time will get rid of all of those after effects and that he will start to feel better soon. I hope he catches a bunch of fish in the near future.

Nina

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Pamela as you know I can relate to your anger about those medications. Our loved ones were treated pretty much the same way only you were lucky enough to have help to save your dad.

I have dedicated my life to getting the word out about those medications and doctors that have that attitude that kills as surely and in some cased even more so than the cancer does. One thing everyone should be aware of is that pain medication is for PAIN especially Morphine. When given when no pain is present it can and does kill. That information is readily available but most people tend to ignore it. The problem is it is often started when there is pain and never stopped so the person becomes addicted without even realizing it. I know the facts about those drugs because I have spent over a year reading everything I can find about them.

I believe that once a doctor does anything that deliberately causes harm under ANY conditions they should be prosecuted just as you or I would be. Unfortunately the medical profession and the state and federal government protects them. Because a person has cancer is not a valid reason to ignore things that can kill them but that it the standard form of treatment especially when a person has lung cancer.

PLease keep telling your story just as I do mine. What happened to your dad was a crime and Johnny's death was murder without a gun but still murder! Until that attitude is changed and the public demands that it be changed what happened to your dad and my Johnny will continue. We are only two who have experienced these things and know them personally. I can't help but fear there are thousands of others who have died under the same circumstances and everyone just buys into the story that the cancer killed them. When will it all end? It is up to us to try to make that change but it is a very hard road because most people are afraid to know that those things happen.

Knowing what the other meds have done to your dad I would pay heed to what the others have said about the Zoloft.

To see what else those medications can do besides kill read my story about Johnny's death in the "For those who have lost a loved one" forum. What happened to Johnny was not only uncalled for but cruel. Cancer causes enoght fear without it being deliberately instilled and a person has the right to maintain what dignity they can. With Johnny they not only took his life but made him suffer more fear and indignities than anyone should have to go through. I think that is why I am still having such a hard time 19 months after his death.

I hope your dad continues to improve physically and that his emotional problems are fixed soon. Sometimes those are the harder battle to fight. Lillian

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Thanks, Lily. I know it must be very scary for others to hear our stories . . . and it may seem unbelievable. I'm not sure I would have believed it if I hadn't experienced it.

I was reading about Jackie Onassis in Readers Digest last night, and she was given such high doses of steroids for her brain mets that her stomach perforated. And you know she had the best care money could buy! When you read something like that, your tendency is to accept that it couldn't be helped, and that may be true in her case. But I can't help but wonder.

I don't think malice is intended by doctors treating cancer patients. I just think they aren't paying attention as much as they should. Medications are wonderful and prevent so much suffering, and I am very glad that things like Decadron and morphine and Vicodin are available.

A neuro-oncologist told us that prescribing medications is an art. A doctor has to evaluate whether a medication may do more harm than good or whether other options might be better than medication. If prescribing medication, he has to determine what medication, how much, when to give it, and WHEN TO STOP. Along the way, he has to make decisions about what he thinks the patient should or should not be told about possible side effects and adverse reactions. If he alerts the patient, it may cause anxiety. If he doesn't alert the patient, dangerous side effects could be ignored.

What a terrible education all of this is. I'm so glad that there is a group like this! Thanks, everybody, for being there.

Pam

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Pamela

If people wonder why I dont get treatment, it is partly because of stories such at your dad's. I suppose if the treatments offered me a fairly good chance of cure or Lonnnnnnnnnnnnnnnnnnnnnnng term remission, I would consider. But that is not what the offer is. The supposedly will extend my life by a few months. Though there is a great possibility that I end up a little old woman in a wheelchair without treatment, I t hink there is a greater possibility of doing the same thing quicker with treatment.

Has your dad had chemo? or is this just from radiation? I take many supplements, could take more

I take one medication and have tried some for pain that haven't really worked so I quit them and am basically med-free. No oxygen. I've slowed down and don't like to do stairs but mostly other than the days when my legs hurt more than normal, I am ok, not great, but still ok.

Even the nurses and dr thought I would be in "bad shape" by now, but I wonder if that is because they are used to seeing people who have done treatments. Oddly, they don't seem happy that I am doing so well. Still like to tell me it won't last long.... NIce of them, huh?

I am not advocating that anyone choose my path. There are some days when I THINK I want treatment but then I think again. I don't trust the medical profession to be more than dispensers of medicine and to be so without thought to the consequences. Especially for lc.

I will pray your father regains his strength in spite of the medical profession.

love

elaine

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Pam -

I see you are in Independence -I am in OP. I am wondering who your Dad's oncologist is? Where is he being treated? This is atrocious treatment and I want to help spread the word to avoid this hospital. Are there any other dr.'s he can see or is he limited (I noticed in one of your posts that you can't take him back unless he is acute)? My Mom has had nothing but good experiences and if I can help in anyway - please let me know!!!

Thinking of you and your family!

Amy

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Since April 2, I have taken Wayne to the ER 3-4 times for side effects of the brain seizure meds he supposedly HAS to take--just in case he might have a seizure (he has not) following his brain surgery to remove a tumor. He is very sensitive to drugs having never taken much of anything. His oncologist decided he would not be taking chemo. I agree with that and personally think it would kill him anyway.

He really didn't want to take WBR radiation but the doctors scared him into it and I'm hoping he doesn't have too much damage from it. He'll be finished next week and I'm hoping that's the end of any treatment from the doctors so we can start getting him well. We have him on a very good diet, lots of vitamins and supplements and several alternative cancer treatments which I believe have helped him get through the medical treatments he has received so far.

I'm very down on the medical profession lately when I hear about the horrible treatments people have to go through when they have cancer which doesn't cure them anyway. It's so sad that anyone living in a country as great as ours has only a few medical options that are so destructive to human life.

Roanna

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Amy,

Dad lives in Kermit, Texas. (Probably no one here has heard of it.) His radiation oncologist was at the West Texas Cancer Center. That oncologist was the one who forgot (oops!) to taper down the Decadron from 16 mg a day, resulting in steroid myopathy.

Dad was also treated at M. D. Anderson in Houston and Scott & White in Temple, Texas. The absolute worst care he received was in the Symptom Control & Palliative Care unit of M. D. Anderson. I would never, ever, ever, ever suggest anyone allow those quacks to touch them. They didn't do much except prescribe 12 medications that interacted with each other and his lung infection -- which they did not find even after Dad was in the hospital for 2 weeks complaining that his chest hurt ("Lung cancer. Get used to it." they said) -- to produce the most god-awful case of delirium you have ever seen.

Anyway, I hate being negative. I've learned here that Dad's not the only one who has experienced less-than-stellar medical care, and it can't be undone now.

Thanks for asking. Sorry for the rant.

Pam

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I sincerely hope things start to turn around for you guys. You have alot of confusing things going on. Ive never heard of such side effects from med's but I suspect that anything is possible in this crazy business. I hope your dad starts to get back to normal.

Best wishes and good luck to you

Jamie

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