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Has anyone experienced this, could really use some help


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Hi, my name is Beth and my father John has been fighting cancer off and on for 26 years. Lately it has been quite a situation.

In february he was briefly in the hospital for pneumonia. About 4 weeks later he was still not quite himself, but the oxygen requirement was very very low and he seemed to be gaining strength. The Dr's. were about to begin him on chemo again.

Over a period of about a week, he went downhill alot. His appetite was gone, very very lethargic, seemed much weaker until during the night at the end of that week he couldn't function physically or mentally, lost control of his bladder, couldn't walk or really even sit up. We took him to the hospital and they diagnosed him with slight hypercalcemia and then did further testing.

They then found 2 extremely small brain tumors which they did not believe to be the cause for that situation however they started him on decadron and scheduled stereotactic radiosurgery to be done 10 days later. After 6 days in the hospital he was much better than I had seen him in ages and they released him. Upon getting home, he practically bounced around the house, didn't need oxygen, no asthma attacks and extremely mentally clear. (I imagine alot of the improvement was due to the decadron). He was taken off the decadron right before the brain surgery.

He had the surgery on April 7 and little by little has gone back to the old problem that entered him into the hospital until yesterday when we were forced to call the ambulance again and take him into the hospital.

Has anyone dealt with anything like this? They say it is not the brain tumors causing it and that his calcium level is normal. The ER doc says the CT scan showed no swelling of the brain. Please please let me know if you have any thoughts or ideas. Thank you all very much


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Beth, I wanted to take the time to welcome you to the family. Am I understanding you correctly, has your father been fighting lung cancer for 26 years?! Now, with regard to the loss of apetite, when my father was on decadron for his brain mets in Dec 2002, he had three mets and received gamma knife, which took care of the tumors. When he was on the decadron, he ATE and ATE, and of course gained weight from eating and from water retention and swelling. But when he was weaned off the decadron, his appetite was GREATLY reduced. It was awful, but from what the doctors kept saying, par for the course. So the apetite loss could be from withdrawl from the decadron, I remember the doctors saying this could last for quite a while (and it did), but I am sorry that I don't recall how long that they said that it could last.

I know that Dad was on decadron from when the brain mets caused enough swelling to give Daddy symptoms, then in about two weeks he was treated with the Gamma Knife, and he was kept on the decadron for a few months, and he was weaned off over a period of a couple of weeks. So his loss of apetite happened AFTER he was completely off the decadron. Now you said that your dad was taken off the decadron before he even had the brain surgery, so I am wondering if the loss of apetite would would be even worse and occur quicker since he wasn't weaned...You might want to ask the neurologist or oncologist. They may be able to try an apetite enhancer, My dad was on one for a while- it was Megace, you might want to ask about it, as it might help your dads apetite. The only thing that really helped my dad was when he was put on a steroid to help with his breathing.

I hope that this was of some help to you, I am sure that some of my friends here will be able to help you even more. Please take care, and keep us posted. Deb

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Decadron gave me quite an appetite and a lot of energy--as in not sleeping type energy. I always had that as a push in my IV as soon as they started chemo and I didn't sleep very well for a couple of nights after that.....

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I am currently on Decadron (1mg per day) and have been eating everything in site and I too feel totally wired. I will be glad to get off this stuff and get a good nights sleep. I guess I could have gotten sleeping pills, but I am NOT a pill person, so I'm dealing with little cat naps and 3-4 hours sleep per night. Should be wened in the next couple of weeks. I just had a met surgically removed 1-1/2 weeks ago. Getting ready for radiation... Hope they find what is wrong with your dad. In my prayers.



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Hi Again,

Yes, my Dad was first diagnosed with adenocarcinoma, unknown primary in 1978. The first location was his shoulder and he eventually had his arm removed. He has had 4 lung surgeries and of course they can do no more of those, he has had radiation and lung damage due to gemzar (he developed asthma).

I problably didn't explain correctly about the symptoms - the two times this has happened it was before the decadron that he had loss of appetite, mental unclarity, difficulty with walking, he seemed to get short of breath. Once they treat him with decadron everything clears up and he looks almost as good as new after several days on decadron, including having a huge appetite.

His brain tumors were so small that they say they didn't think were causing this type of symptom.

Mainly what I was wondering is if anyone had this type of situation happen and what they diagnosed it with.

Thank you all for responding, I really appreciate it.

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HI Beth,

Just wanted to welcome you. Sorry so late to post, but I am a bit behind and am catching up on the boards.

Although my husband has never had these sypmtoms, they sound very similar to those I've heard from a number of other members when dealing with anemia and low iron and red blood cells. I would ask your oncologist to make sure to test your father's blood levels. Unfortunately too often we are put in a position of having to advocate treatment for those we love rather than have doctors being proactive. Do not stop asking the doctor's to investigate until you are satisfied you have the correct answer to your questions. My husband has been complaining about numbness and pain in his right arm since Jan. and the onc. was choosing the wait watch and see what develops plan. Only after continual nagging and pushing by me did we convince him that it was necessary to run EMGs and MRIs to find the true cause.

Be an advocate for your father and insist on nothing less than the best most indepth care for him.

I am very sorry you have a reason to be here, but glad you've joined our family here. We are here for whatever you need, and we are glad to help in any way we can, whether it be information, experience, support, prayers of just someone to listen as you vent, laugh or cry.

Wishing you the best, and I will be praying for your family


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Hi Beth,

I didn't see your post earlier and just saw it now since Carleen wrote to you. Like Carleen, I'm sorry I can't give you any answers on the symptoms your dad is having. I only know that Decadron did for my husb. what it did for your dad. He was down in bed almost 24/7, fatigued, could hardly walk any distance because he was so weak. I even had to drop him off at the door for chemo appointments. After the onc. put him on Decadron, he finally started feeling better, started eating a little more, and gained back a little weight. Of course, after the chemo and radiation he finally got his strength back and no longer needs the Decadron. Other than that, I'm afraid I can't offer much else.

I am amazed, though, at your father. He sounds like an incredible man having lost an arm and 4 lung surgeries, and he has had this for 26 years :!::!::!: WOW! Talk about long term survival. Every single person on this board needed to hear about your dad. It really gives us hope and we appreciate you sharing. I bet you are so proud of him. I just wish we could help more.

It's been about a week since your post. Is he still in the hospital? How is he doing now? Please keep us posted. I will pray for him and for you.

God loves you,


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