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redkat68's Message Board Messages

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Geroge,

Please read all the responses to your question; but most especially Peggy's answer.

We think of cancer as all encompassing but it's not and depending on the specific type of tumors that you have that will determine the test that you need to have.

Because Eric has pancreatic neuroendocrine carcinoid if we relied on PET scans, he would be dead. PNeTs are slower metabolizing tumors than other cancers and PET scans don't pick them up.

Talk to your doctor, question him! I did, that's why I know the answer to the question, "If PET scans are so fabulous, why doesn't Eric get them?"

Good luck! I'm glad you are asking questions and advocationg for yourself!

Kat

I wish more caregivers would talk about this. His problems started before his diagnosis due to the tumor load in his liver. We (the family) actually thought he had early onset Alzheimer's. Then the chemo and the surgeries and the pain medications (no steroids) have all added to LOTS of memory loss and lots of lost time. By lost time I mean statements like, "Wow they put a Mexican grocery in on the corner there. Just 2 months ago that was a bakery." When in all actuality that Mexican grocery store has been on the corner for over 2 years now.

The argumentativeness is the worst thing. I can accept the forgetfulness; but, don't be a jerk about it. My gentle sweet man was becoming a stranger to me. He even went into a couple of rages (walking around the house yelling at the walls and venting emotions wildly) and we finally got the help of a behavioral oncologist. A behavioral oncologist is a shrink that specializes in cancer patients.

The problem can be getting your man to see that he has a problem and then getting him to seek help. It took forever for Eric to accept that the problem was him and not me. It took documenting specific incidents and finally when he accepted it and wouldn't take action I took it to his oncologist. One day in his doctors office the doctor asked how things were and I blurted out the truth, the whole truth, and nothing but the truth. We got a referral to behavioral oncology that day. Eric (being a manly man from Oklahoma who doesn't believe in psychology) put off going for months. It took 6 full months of pressuring from me to get him to go and now he's really grateful. It saved our relationship.

Eric is actually getting his liver mapped next week for the Y90 SIRS treatment here in Louisville. We are blessed to have some of the finest hospitals in the world here and when we met with the carcinoid team down at Oschner they referred us to Dr Scoggins here at UofL.

I can't imagine the out of pocket expense if we had to go to Switzerland. His appointments are 2 and 4 weeks apart with a total of 3 (1 liver mapping, 1 procedure for each liver lobe) procedures and multiple folowups.

I am sorry to hear about your husband. I don't know about you; but, 2011 has certainly been a mixed bag of ups and downs. I think I shall declare 2011 to be the year of the Roller Coaster!

@JenHolm25 How are you? Last I had heard you were having surgery!

If you don't mind my asking? Had your cancer metastisised to your liver yet? Eric hasextensiveliver mets, I am beginning to suspect hepatic encephalopathy. Something to discuss with the oncologist next visit, I suspose. I stumbled across it on another forum where a caregiver was discussing end stage liver cancer.

We were just at the oncologist to day and my husbands doctor said "cancer breaks a lot of things". Sometimes its hearts.

I am thinking of what your Mother said and without knowing your situation perrhaps she is preparing for the day when she will need your help caring for your father. Maybe she fears that if you come now you will not be able to come down later? Perhaps she doesn't have the emotional strength to care for him and nurture you at the same time. As a mother, I would be torn and afraid of failing both of the people that I love so dearly. I do not know your specific situation so this is just speculation.

I hear your pain, it is so difficult to watch someone you have known to be so strong and unstoppable suddenly become so frail. My Eric is 6"2' has always had endless energy and an unbeleivable pain threshold. Now at only 52 he faces terninal cancer, constant, sometimes excruciating pain and fatigue; meanwhile all I can do is try to not let him see me crying all the time. The helplessness is overwhelming sometimes. I want to kiss it and make it better.... the only problem is, I can't. Sometimes I accept that and attain peace for awhile and then I loose that acceptance and start to cry again. It's a process. A slow process but it is getting better.

Gather your girlfriends close, they won't mind listening and letting you cry. Mine have listened alot in the last 6 months. Have a glass of wine and allow yourself to be afraid and sad, you are only human after all.

Hope your doing well!

Trying and having a problem finding that group on FB. Do you have a link?

@ Jenholm25 Thank you, thank you, thank you for replying to my message. Since Dr Lowell Anthony was so non-challant about there being mental and emotional side effects to carcinoid cancers I am certain that there are many, many families out there suffering alone, embarassed to talk publically about how frustrating their family life has become.

It's so hard enough to deal with a diagnosis of cancer, the fear and anger; but, carcinoid puts its own twist on things and makes life harder on patients and families. I hope patients and caregivers will start talking. I know we aren't the only two.

I was hoping to open this dialogue because I believe this may be an elepant in the room for many of us dealing with the Neuroendocrine Carcinoid Cancers. 

For the last 2 years before Eric was finally daignosed I believed he was spiraling down toward alzheimers at the early age of 50 (it runs in his family) but any talk of his memory lapses brought about swift anger. His mood swings were horrenous. living with him and a pre-teen girl was almost umbearable, I'm not sure which of the two of them was worse. 

He would forget little things at first and I would always take accountability for the the lapse (I'm notoriously forgetful) but then he started to forget conversations that we had had in with other people and get defensive and angry about it. Then he started to forget important things, meaningful things and always defensive and agnry about it.

Please keep in mind this defensiveness and anger accompanied by split second mood swings are not normal for him.

Flash forward to post diagnosis; we asked his doctor about this and his doctor said,

"Because of the nature of this disease and how it functions, if you didn't have some emotional and mental issues I would wonder if you had been mis diagnosed."

This was a great relief to my husband and I. It seemed to take some pressure off him as if to say "No, you are not failing as a person. You're just sick."

By the way my husbands brain scans came back clean.

Octreotide treatement which seems to be helping signifigantly with his memory lapses, mood swings and anger management.

I am interested in other caregivers....

For so long I wondered, was I going crazy? Am I imagining these conversations that he doesn't remember having with me?

Sometimes I feel like I can't take another day with his mood swings. Surely someone else feels that way too.

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