Need Help Understanding Symptoms

Hi,

My father is 77 years old and was diagnosed with Melanoma 1 1/2 years ago.  It started in his groin and he had a lymphadenectomy and NO chemo or radiation.  He was cancer free for 1 1/2 years and then the lesions started to appear again at the site of the surgery. But ever since his diagnosis he has been waiting for it to come back again.  He is very depressed and cannot deal with his imperfections since the surgery. He has constant edema in his leg and he says it has "impeded" him.

After the lesions returned, he went to a medical oncologist who ordered many tests and they found that it had metastasized to his liver.  Supposedly there are only a few lesions and they started to treat him with a three month course of Thalidamide and Temador (orally).  He started to become disoriented after taking the medications, but rarely got nauseous or any other side effects. 

After three months of treatment most of the lesions were disappearing from his groin but the liver lesions did not change.  The doctor wanted to use Taxol for his liver but my father refused because he didn't want his hair to fall out (he is very vain).  So my parents decided to stop all drugs for three weeks.  In that time, my father has become much more disoriented, wets himself, complains of dizzines, weakness and nausea. Also he has turned an orange color and is even urinating orange.  When he finally returned to the doctor this week they said he was jaundice.  He was scheduled to begin Taxol infusions, even though he didn't want them.  He was very apprehensive, and become even more disoriented.  The doctor decided to hold off until he got an abdominal sonogram to make sure there was no blockage, although they really don't think there is.  And, they decided that Avastin is a better drug of choise anc want to start infusions next week after the sonogram.  They did check his bloods and they all came back completely normal. 

What I want to know is if this vast deterioration is due to cancer or mindset?  I live in California, and he lives in New York.  Both my parents think he is dying, although the doctor is not saying that.  He believes he can help him.  My sisters also think he is dying.  I don't believe it, but I haven't seen him.  My father is NOT in any pain or discomfort.  He is not taking a drugs except Lexapril (which I don't think is a high enough dosage) and Namenda. 

Can you please shed some light on this subject.  I believe that if my father was in such bad shape, the doctor would say, and he would be in pain or something.  Organs would be failing, some other symptoms would occur.  I am a firm believer in mind of matter.  My father is very stubborn, and very angry.  I believe that he wants to die. I believe that he has given up and he cannot deal with the diagnosis of cancer.  He doesn't want to lose his hair and he doesn't want anyone to see him like this, most especially himself.  He gets sick, physically sick, when he looks in the mirror. 

Can you help answer my questions?  Is this really a man who is dying from cancer  or from the diagnosis of cancer?

My husband was diagnosed with esophageal cancer in April 2005. It will be exactly 2 years ago tomorrow. He has surpassed all odds. All doctors are amazed. His attitude and will to live have kept him going. For 2 years it has been constant treatment. Everything and anything he could withstand. He's still here. Mainly because  he wants to be.

If ever I made him feel like he was a burden, he would not be here. He has had the love and support from family and friends - and me - to back him, and be there throughout this whole ordeal. Never once was he denied hope. (Well, once - and we went to another cancer center) There are those "Living with cancer" and those "dying from cancer". My husband chose to live. But, it's thier choice, not ours.

Being that it's a different cancer, with different side effects and meds, I really don't know what to say about the disorientation. Going through any treatment for cancer seems to cause this. I believe a strong mindset to get through the bad days has the most important role in getting to the good days.

We never look at this through rose colored glasses. Kevin (my husband) hates for others to see him. It took him a long time to realize I still just see KEVIN. He hates the way he looks, but his will and determination to not give in to this, now overpowers what he sees in the mirror. We both know his time is limited, but he will live, until he dies. His courage and "mind over matter" really does make a difference when he has the bad days. He has confusion, agitation and he gets scared. But, I am right there with him to get him through it. Which, brings him to his good days. His quality of life of course has suffered. But he too has no failing organs, pain is controlled. This may sound wierd, but he is aware when he gets confused and disoriented. So he sleeps, prays and I do crosswords with him or ask questions that make his mind active. I don't overload him, but he's where he wants to be. Here.

Everyone is different. If your Dad wants to go - for whatever reason, there is nothing you can do. Maybe you could ask him why he wants to die if the docs believe there is some kind of hope to at least extend his life. You may not agree, but possibly be able to answer your own questions. I can't imagine being so far away. Just don't forget, it's his decision. Not knowing you or your family, no one can really tell you what to do. Maybe, ask your questions you have for your Dad and maybe you could  get a better understanding of what's going on in his head. His reasons may be vane or selfish, or something else. To me, it's okay to ask.  I will be hoping for the best for you and your family.

On 4/9/2007 Lou38s wrote:

My husband was diagnosed with esophageal cancer in April 2005. It will be exactly 2 years ago tomorrow. He has surpassed all odds. All doctors are amazed. His attitude and will to live have kept him going. For 2 years it has been constant treatment. Everything and anything he could withstand. He's still here. Mainly because  he wants to be.

If ever I made him feel like he was a burden, he would not be here. He has had the love and support from family and friends - and me - to back him, and be there throughout this whole ordeal. Never once was he denied hope. (Well, once - and we went to another cancer center) There are those "Living with cancer" and those "dying from cancer". My husband chose to live. But, it's thier choice, not ours.

Being that it's a different cancer, with different side effects and meds, I really don't know what to say about the disorientation. Going through any treatment for cancer seems to cause this. I believe a strong mindset to get through the bad days has the most important role in getting to the good days.

We never look at this through rose colored glasses. Kevin (my husband) hates for others to see him. It took him a long time to realize I still just see KEVIN. He hates the way he looks, but his will and determination to not give in to this, now overpowers what he sees in the mirror. We both know his time is limited, but he will live, until he dies. His courage and "mind over matter" really does make a difference when he has the bad days. He has confusion, agitation and he gets scared. But, I am right there with him to get him through it. Which, brings him to his good days. His quality of life of course has suffered. But he too has no failing organs, pain is controlled. This may sound wierd, but he is aware when he gets confused and disoriented. So he sleeps, prays and I do crosswords with him or ask questions that make his mind active. I don't overload him, but he's where he wants to be. Here.

Everyone is different. If your Dad wants to go - for whatever reason, there is nothing you can do. Maybe you could ask him why he wants to die if the docs believe there is some kind of hope to at least extend his life. You may not agree, but possibly be able to answer your own questions. I can't imagine being so far away. Just don't forget, it's his decision. Not knowing you or your family, no one can really tell you what to do. Maybe, ask your questions you have for your Dad and maybe you could  get a better understanding of what's going on in his head. His reasons may be vane or selfish, or something else. To me, it's okay to ask.  I will be hoping for the best for you and your family.

Thank you so much for your caring words. When I last spoke with my father he was very agitated and angry.  He thinks Everyone is lying to him about his health.  He doesn't believe that he is going to be OK. 

Yesterday my Mom brought him to the hospital because he was very weak, and disoriented.  So far all the tests came back normal.  However, there are still a few more to run, and she doesn't have those results.  However, his brain CT came back completely normal.

I do honestly believe that he has put himself in this state of delusion.  He says that he is trying.  But my father has never been an Optimist.  He even admitted that there is ALWAYS a black cloud over him.

So far, they cannot figure out a physical reason why he is so delusional but hopefully by tomorrow my Mom will know more.

It is difficult being so far away but my husband was in a car accident about a month ago and broke his hip and femur, and I have to school-age children so it is IMPOSSIBLE for me to leave.  I know that whatever is meant to be will be.  I just hope that he snaps out of this so that I can see him once I am able to leave California.

Again, thanks for your kind words.  They really do help.  And, I am so proud of your husband Kevin, for wanting to LIVE!  It is definitely the right choice.

Good luck to you both. 

Dear Joliver,

you wrote:

Thank you so much for your caring words. When I last spoke with my father he was very agitated and angry.  He thinks Everyone is lying to him about his health.  He doesn't believe that he is going to be OK. 

Yesterday my Mom brought him to the hospital because he was very weak, and disoriented.  So far all the tests came back normal.  However, there are still a few more to run, and she doesn't have those results.  However, his brain CT came back completely normal.

I do honestly believe that he has put himself in this state of delusion.  He says that he is trying.  But my father has never been an Optimist.  He even admitted that there is ALWAYS a black cloud over him.

So far, they cannot figure out a physical reason why he is so delusional but hopefully by tomorrow my Mom will know more.

It is difficult being so far away but my husband was in a car accident about a month ago and broke his hip and femur, and I have to school-age children so it is IMPOSSIBLE for me to leave.  I know that whatever is meant to be will be.  I just hope that he snaps out of this so that I can see him once I am able to leave California.

Again, thanks for your kind words.  They really do help.  And, I am so proud of your husband Kevin, for wanting to LIVE!  It is definitely the right choice.

I want you to reread your note above.  It sounds like you are describing dementia problems.  I know he is on Namenda.  Maybe this problem needs to be addressed again with his doctor. 

My husband is 67.  He has metastic lung cancer.  No one can tell me why he is suffering from dementia symptoms.  The tumor in his brain has shrunk to a tiny size so it is not the culprit they suspected.  I don't know how much longer he has, but my dream is that he can enjoy the time he has.  The confusion and symptoms you mention have made this impossible.  

A psychiatrist recently started him on Namenda and Aricept.  He's only taken it a couple of days.  I am praying it will help him come around.  Next week we will start with hospice. 

 I wish you and your family all the luck in the world.  The psychiatrist told me that when you don't know what is causing the problem, you have to treat the symtoms.