Neuroendocrine Carcinoid Cancer & mood swings/memory lapses

31 Posts | Page(s): 1 2 3 4  Next 

Neuroendocrine Carcinoid Cancer & mood swings/memory lapses

by RedKat68 on Fri Aug 12, 2011 02:16 PM

Quote | Reply

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.

RE: Neuroendocrine Carcinoid Cancer & mood swings/memory lapses

by Jenholm25 on Tue Aug 16, 2011 11:07 AM

Quote | Reply

OMG!  I can SOOOOO realate to this!  not only would I forget conversations, I would forget movies we had seen.  It became a running joke that I kept renting movies we had already seen.

Honestly, it was very frustrating for me.  I was afraid I was losing my mind.  I was struggling at work.  I used to be an avid Franklin Planner user, but once things went digital, I struggled seeing the little buttons and taking the time to press one button at a time to get info into something that I could quickly jot down on a piece of paper... although I had a tough time keeping track of those pieces of paper, or remembering what I wrote down.

And the anger, rage really, for no real reason...  i saw a therapist to learn stress relieving techniques otherwise I was worried that I'd end up punching a co-worker or at least blowing up and saying something that would get me fired.

i was evaluated at one point for my memory loss.  It was chalked up to migraines and non-headache migraines.  Which we now know were triggered by the hormones of the tumors.

I was diagnosed in 2010 - 6 years after I began experiencing carcinoid syndrome.  This is quite the roller coaster ride.  But i'm grateful we know know what it is and why all of these seemingly unrelated weird symptoms all now make sense.

RE: Neuroendocrine Carcinoid Cancer & mood swings/memory lapses

by Jenholm25 on Tue Aug 16, 2011 11:07 AM

Quote | Reply

OMG!  I can SOOOOO realate to this!  not only would I forget conversations, I would forget movies we had seen.  It became a running joke that I kept renting movies we had already seen.

Honestly, it was very frustrating for me.  I was afraid I was losing my mind.  I was struggling at work.  I used to be an avid Franklin Planner user, but once things went digital, I struggled seeing the little buttons and taking the time to press one button at a time to get info into something that I could quickly jot down on a piece of paper... although I had a tough time keeping track of those pieces of paper, or remembering what I wrote down.

And the anger, rage really, for no real reason...  i saw a therapist to learn stress relieving techniques otherwise I was worried that I'd end up punching a co-worker or at least blowing up and saying something that would get me fired.

i was evaluated at one point for my memory loss.  It was chalked up to migraines and non-headache migraines.  Which we now know were triggered by the hormones of the tumors.

I was diagnosed in 2010 - 6 years after I began experiencing carcinoid syndrome.  This is quite the roller coaster ride.  But i'm grateful we know know what it is and why all of these seemingly unrelated weird symptoms all now make sense.

RE: Neuroendocrine Carcinoid Cancer & mood swings/memory lapses

by RedKat68 on Tue Aug 16, 2011 01:24 PM

Quote | Reply

@ 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.

RE: Neuroendocrine Carcinoid Cancer & mood swings/memory lapses

by boppysarz on Sun Oct 16, 2011 02:47 AM

Quote | Reply

My father had Neurendocrine Carcinoid cancer, but he died in 2008. he had alot of mood swings, 

Maybe because he still thought of me as "his little girl" he didnt tell me the extreme to his sickness........I was full time carer for my mum who passed away in June 08 of motor neurone disease. and Dad had only just got diagnosed in the march 08. 

I am unsure if it was protection or what but he didnt tell me half of the stuff he told his sister. and sometimes when Id ask he would get angry... Dad also said some extremely awlful things to me, which made me sad. . . and things i told him in confidence he told family members that shouldnt have known. but am unaware if that was because of the cancer. 

dad passed away in september 08..  I miss them a great deal. but have alot of mix emotions  towards dad, as No one can tell me why he said and did the things he did. 

sorry ravving on a bit :)

Sarah

RE: Neuroendocrine Carcinoid Cancer & mood swings/memory lapses

by jarsclay on Fri Oct 21, 2011 03:58 PM

Quote | Reply

My Dad was diagnosed with neuroendocrine cancer last year. He has extensive liver mets and spreads to several other places. It's very advanced.

I am very close to my Mom and she tells me a lot about his mood swings. I've also witnessed them firsthand and his memory lapses ... it started in really small ways, but it definitely has gotten worse. From what I've read and what the doctors have said, there are several contributing factors to the memory loss. He is in heart failure from the valve damage to his heart and so his heart isn't pumping efficiently - that's number one. Hormones play a part, at times he's been dehydrated from the diarrhea ... I'm sure the list goes on. I think because it's such a complex cancer and effects so much of the body and is involves the hormonal system, there are many symptoms that you don't see with other cancers.

It's been very hard on my Mom as the primary care giver.

RE: Neuroendocrine Carcinoid Cancer & mood swings/memory lapses

by Jenholm25 on Fri Oct 21, 2011 04:11 PM

Quote | Reply

RedKat68 - you're wlecome.  :)  As a patient, i know the memory loss can make on feel like we have alzhiemers or something.  And it can be sooo incredibly frustrating for us.  As well as for our friends/family.

It's easier to deal with the mood swings when you know that they pop up, they are caused by the cancer, and you can control how much you interact with others during those swings.  Some patients say that using rescue sandostatin/octreotide sub-q shots help mellow us out during these mood swings.

RE: Neuroendocrine Carcinoid Cancer & mood swings/memory lapses

by Jenholm25 on Fri Oct 21, 2011 04:16 PM

Quote | Reply

jarsclay,

I'm sorry to hear about your dad.  Carcinoid heart disease is a devistating wrench thrown into an already crappy situation.

My thoughts and prayers are with you and your family.

My best,

Jen

RE: Neuroendocrine Carcinoid Cancer & mood swings/memory lapses

by RedKat68 on Fri Oct 21, 2011 04:47 PM

Quote | Reply

@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.

RE: Neuroendocrine Carcinoid Cancer & mood swings/memory lapses

by Jenholm25 on Fri Oct 21, 2011 06:18 PM

Quote | Reply

Hi!  i'm hanging in there.  Well, due to my 5-HIAA seritonin levels and carcinoid syndrome, we know that the liver is being bombarded with seritonin.  No visible tumors are showing up right now on my liver.  Have mets to several lymph nodes in my chest that are showing up though.

Mostly just dealing with carcinoid syndrome and feeling really tired out.  Having issues with shortness of breath and occasional chest pain- but many of us at stage 4 experience this and the docs don't know why.

Have you guys talked to Eric's onco about the idea of doing the Y90 treatment in Switzerland?  I know a guy who did that treatment because his liver was so bad.  It's worked at reducing the size of some of his tumors and has given him more time.  I can get you in touch with him if you're interested.  How are Eric's liver function tests looking?

Unfortunately, my husband was just diagnosed with skin cancer (melanoma) this week.  We're not sure how far along it is yet.  He has a surgical consult next week.  We have a 14 yr old daughter - who is actually taking the news better than we are.  But I think she's a little naive as to how cancer can be - which is probably good right now.  Hubby might have to go through chemo.  So we're just taking life day by day around here. 

31 Posts | Page(s): 1 2 3 4  Next 
Subscribe to this message board discussion

Latest Messages

View More

We care about your feedback. Let us know how we can improve your CancerCompass experience.