1 (edited by Lainy Fri, 04 Jul 2014 14:25:05)

Topic: What Is The BIG Secret?

Not sure if I am just irritable because I had my infusion Wed. 4 weeks from the last one instead of 8 and they increased me from 4 vials to 7. Or I could just be irritable because I am getting to be a cantankerous  old bag BUT I just read about 2 deaths that were from "an incurable cancer" and I want to know WHY people cannot say what it is. Perhaps it could help someone else to know. The first is a politician and millionaire Richard Scaifa who announced 2 months ago that he was DX with an incurable cancer. He had 2 months to live so who knows it could be CC it could not. The 2nd was a young army wife in TX who was 4 months pregnant and DX with a huge tumor in her liver. The only thing they could do was to do the Y-90 and that kept her going to have the baby, thank God a healthy baby. That could be so important to your younger members if they knew what it was.  Sorry, I guess I am blasting off like a fire cracker today. Thanks for the steam vent....go now and enjoy the 4th!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: What Is The BIG Secret?

Morning Momm!

Nothing wrong with you having a steam vent at all, you go for it! It helps as you know to have one every now and again! I get that way too sometimes when I read or hear stuff like that and wonder like you why they don't come out and say what it is. Maybe it is just too personal for them and they don't want to say what type of cancer it is, dunno really but wish that I knew!

Glad as well to hear that the young woman was able to have her baby though and yes, the details of that person could be very useful for younger people. Hope that you saw plenty of proper fire crackers last night for your 4th and hope that you had a good one!

Hugs,

Gavin

PS - As for being a cantankerous old bag as you put it, I ain't getting involved in that discussion!!! But hope you ain't gonna be cantankerous when your my chaperone at the dancing with Lisa!! smile

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: What Is The BIG Secret?

Ha, son from another Mum! Its still night, I couldn't fall asleep. Was watching a show from the White House and they had my favorite Patti LaBelle and also Frankie Valli and Robin and I had just seen the movie Jersey Boys. Good program for the 4th. I hardly hear a bang out here. Was pretty quiet. 
Oh, I am over being an angry bird.  I get hot under the collar and 1/2 later it is over and I never remember why I got angry. Always been like that. 
Parties are good and you better save me a dance!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: What Is The BIG Secret?

I thought that it was late for you to be up! It's early here, just after 6.30 so know that it's late over your way and it's usually Marion that I see on here at this hour, so Marion if you are reading this, get to bed!!! And you too Lainy!! smile

Glad to hear you ain't an angry bird anymore and for sure I'll definitely be saving a dance for you! Hope you get some sleep!

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: What Is The BIG Secret?

Lainy,
I wish people would post the type of cancer as well but I think when people go quickly the family does not completely grasp the impact of awareness because they are so raw with emotions. I understand the importance of awareness and collaboration now but it took a while to get to this place. Cantankerous or not, you can chaperone!!!!
Love
Lisa

This Information Is Not Intended Nor Implied To Be A Substitute For Professional Medical Advice. You Should Always Seek The Advice Of Your Physician Or Other Qualified Health Care Provider

Re: What Is The BIG Secret?

Lainy,

You are definitely NOT cantankerous or an old bag.  smile  I know what you are saying.  I too wish the word Cholangiocarcinoma was used more than just "liver cancer", but do agree with the others that the awareness is just not always there.  At least not at first.   Hope you had a nice 4th and are having a good weekend.

Love,
Darla

"One Day At A Time"

All of my comments and suggestions are just my opinions and are not a substitute for professional medical advice.   You should always seek the advice of your physician or other qualified health care providers.

Re: What Is The BIG Secret?

Some people as well do not want to admit to others that they even have cancer never mind what type of cancer it is as well. Don't think that Steve Jobs even admitted that he was ill never mind that he had cancer. I guess it's a very personal thing. Jamie Dimon of JP Morgan on the other hand last week came out with the news that he has throat cancer and got a lot of plaudits for doing that.

Hugs to all,

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: What Is The BIG Secret?

Gavin, you hit the nail on the head. Bottom line is the more the word CC is heard the more people will begin to understand. Sometimes only I understand what I mean so thank you for that post as that is what I meant. It is no laughing matter but I sure am.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: What Is The BIG Secret?

Glad to be of help as always Momma! I see you're up late again, hope all is okay.

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: What Is The BIG Secret?

All is OK. Just having an allergic reaction to the Remicade....itching. But took a Benadryl and waiting for it to work.  Isn't the rule of thumb that with these infusions or chemo, the more the effects the more we feel it is working? At least one would like to think so!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: What Is The BIG Secret?

Hey guys!

My two cents is that some people don't tell what "kind" of cancer they have because they want to be surrounded by hope and some cancers just don't come with that hope built in (like breast cancer has hope because of new treatments, etc.).  I find myself telling people, when I do tell them, that I am survivor of cholangiocarcinoma and then say liver cancer because most don't know what CC is.  People understand liver cancer because it sounds 'serious'...nobody even knows they have bile ducts!

Also, another thing that may cause people to hold back on the type of cancer they have could be because of judgment (lung cancer = you did it to yourself smoker).  Or it's in private parts (anal, colon) and people don't want to people to know.  I think Michael Douglas said he didn't say the correct cancer because the usual treatment for the cancer he had was disfiguring.  When people find out I have had 3 cancers they imagine that I am feeble and sick all the time, hopefully until they meet me!  Assumptions abound for sure.

I am a straight forward person and say it like it is for most things, good, bad, or indifferent!), but I get why others want to be private.

Sorry I haven't been around a lot...work has been all encompassing.  Working with those with addictions and mental illness is challenging for sure and I have not mastered the art of leaving work at work yet.

Glad to see all of you online when I stop by and read.  Take care all.....-Randi-

Survivor of cholangiocarcinoma (2009), thyroid cancer (1999), and breast cancer (1994).

My comments, suggestions, and opinions are based only on my personal experience as a cancer survivor. Please consult a physician for professional guidance.

Re: What Is The BIG Secret?

Good to see you, Randi girl! Thanks for your explanation it sure makes sense. Guess my problem is that by being open I feel it helps me get through and sometimes I forget about the rest. I am also happy that you like what you are doing and I would not expect any less from you than to bring it home as you are a very caring person. I love to see your smiling face!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: What Is The BIG Secret?

I tell people I have cancer. If they ask, I tell them the name. To clear the confusion, I tell them working bile ducts keep their poop brown. And I tell them except for surgery, there is no current cure, only hopefully ongoing stability.
But I'm hopeful because of genomic testing. And I will continue to hope.

KrisJ
"Don't just have minutes in the day; have moments in time."
Any opinions I give are based on personal experiences, and are not based on medical knowledge. I strongly suggest receiving medical care and opinions.