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(6 replies, posted in General Discussion)

Thanks to both Kris and Lainy.

The point that I wanted to make ( which I completely lost.....) is to any
of our members who ever thought about volunteering but hesitated or
changed their mind for the same reason that I almost did....shouldn't.

You don't need to be medically savvy or a whiz at computers or have
credentials.... you just need to 'show up' and you'll find your niche.

@Lainy- Teddy and I would have been quite a force together !  big_smile

2

(6 replies, posted in General Discussion)

Hi-
I am 2 years since surgery. I celebrated it by attending this event at the Moscone Center in san Francisco.

When I first found this site I looked into volunteering but at the time- I didn't
have any of the qualifications that was needed.
I'm not really computer savvy and I type using 3 fingers.
So I thought that I would 'do my bit' by volunteering at these events.

You should see Marion. She is amazing. She can hold her own in any discussion with these world eminent oncological surgeons, researchers, scientists and oncologists. She attends meetings, listens to lectures and
sits in on seminars as well as checking in with me at the booth to make sure
that all is well.
Listening to her speak with these people is fascinating and interesting to me.

Tim, my fellow volunteer, is experienced in Research so he attended some meetings and reviewed the Abstracts for anything that pertained to CC.

I stayed at the CC booth and wished that I, too, could have done something equally as important for us all.  I chastised myself for not paying more
attention at that computer class I took 3 years ago.........

But on the way home I realized that because of me ( as a volunteer) Marion could represent us at the Task Force meetings and Tim could attend those seminars/lectures and report on them for us.
And when the doctors and researchers came to the booth I told them that I was a CC patient and they would ask me questions. I wasn't shy about it/I answered all their questions.
I told them about our site and of how much it/ you all helped me. I told them that a lot of what I know about CC- I learned from our CC site and that I had to find it on my own and asked them to please refer their patients to the CC foundation site.
Some of these people were oncologists that have never had a CC patient- some were researchers or scientists and did not deal with people face to face in their work.
And it dawned on me that what I had done that day was also important--
I HAD PUT A FACE TO THIS TERRIBLE CANCER.  I had stood in front of these
researchers/scientists and had humanized this cancer to them.
I wasn't a 'Liver' or 'Bile Duct Ca' in front of them- I was a tall woman smiling at them and speaking with them - a human being.

I don't think that I could have celebrated my 2 year anniversary in a better way.
Lesley

I also just celebrated my two year surgery date ( 1/19/2010) !   

I celebrated it by "manning" the Cholangiocarcinoma Booth at the ASCO 2012
GastroIntestinal Symposium in SF.

I plan to do it every year.

Lesley

Hi Susie !

Thank you very much for your post.
The OHSU people seem to be on the ball as well.

Would you mind telling me which Mayo Clinic did you go to and also
the name of the Oncologist?

I had a resection done 20 months ago with a close margin in one spot.
And one lymph node involved.

I had 8 cycles ( 6 months) of adjuvant Gemzar/Xeloda.

I literally begged them to do Radiation but was refused.

I am so very happy that you were impressed by your consultation.

Best wishes to you,

Lesley

BENECALORIE is made by Nestles.  They have a medical nutrition department.
This product has 350 calories and 7 grams of protein in 1.5 ounces.
It comes in a small little tub, individually. It's not fantastic tasting , but if you mix it in with a small amount of yogurt or applesauce it does the trick.
Two of these little tubs alone each day would add 750 calories to his intake.
I have done a lot of research on finding the highest amount of calories and protein in the smallest amount of food. And this is it.
Their nutrition drinks are even better than anything on the market regarding highest amount of nutrition in the littlest amount of substance.
They have a general Nestles product site... but they also have a healthcare provider site/section dedicated to Medical Nutrition.  It might be their British site.
It does work, -and they do deliver it pretty fast.
Lesley

I am 19 months post op  40% of left lobe resection for a single mass ( 8x5) of Intrahepatic CC. Surgical margins were clear yet the first lymph node on either side of liver  were positive----but not in any of the nodes next in line. 13 nodes from the front and 8 from the back were sent to pathology and all were clear.
Yet that is what helped me make the clear decision of having Chemo.
I did 6 months adjuvant chemo--Gemzar and Xeloda.
I had tissue samples sent to a lab for 'Molecular Testing'.........but it seems that I went to great expense and effort for something that is in it's infancy and not yet a viable avenue-( so now I surmise that I was taken advantage of).
I consulted with Dr Keith Block in Chicago after having read his book and after having a 4 hour consult with him -I decided to embrace his professional advice whole-heartedly.
I did all this because I am 52 years old and must know that I have done/and will do -all that is possible medically , and from a scientific point of view.
This way of thinking works for me.
I guess that I have rambled on a bit.....the main reason I have posted here is to give hope to the newly resected people by telling you that the CT scan I had done 3 days ago shows @ 19 months after surgery--'no recurrence of cancer at this time'.
Lesley

Excellent idea, PCL .....although I much prefer that Resection and Transplant remain as is.
Thank you so very much for your research and info and your willingness to share your keen mind with all who read this site.

Lesley

Percy-

    I just can't believe that you are do so well after such a short time from your surgery !
I am amazed at your speed of recovery..........and your surgeon is probably more so!!

Was any of my info of benefit to you ?

Best Wishes,

Lesley

Percy---

I have thought of you every single day since Thursday.

Another few days and you should be up and walking down the Hospital corridors for exercise driving those nurses crazy!!!!!

That is fantastic.

There ARE researchers and scientists trying so very hard for all of us.

Thank you, Marion.


Lesley

Percy--

Please check your email.


I know that many,many people will be thinking of you on Thursday and thru the days of your recovery.

Lesley

PCL-

I had molecular testing done.  Apparently the tissue samples sent were not sensitive to any of the standard chemo drugs.
The testing cannot give results for all chemo drugs as it works only on certain proteins (so I was told).
I gave the report to my Onc. and he glanced at it and returned it to me.
Didn't even enter it into my chart. 

What I am about to write is of the utmost importance.***********

The tumor bloc/specimen MUST be fresh.  You must INSIST prior to surgery
that the tumor bloc NOT be frozen until a good size portion is kept separate and untreated.

It seems to be standard procedure to 'treat/freeze' the specimen automatically as soon as possible and I was not given a choice in the matter.
Consequently, the opportunity for very precise testings was forfeit.

Lesley

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(13 replies, posted in Announcements)

Marion- you do inspire me.

Is there anyone in the SF Bay Area that would like to brain-storm with me to organize a Walk?   Perhaps a Dog Walk / Parade at Point Iasabel ?

Lesley

Hi PCL1029 !

I am the one taking Anvirzel.  Thank you VERY much for taking the time to sit in for the discussion at Chicago.  It's disappointing that Drs. Khan and Newman weren't there.
I'm sorry that I did not have a chance to meet you and the other people there.
I had planned /looked forward for a long time to attend, even bought the airline ticket, but at the last minute something came up. I regret very much not being there.
Anyway--if this is of interest to anyone, I am s/p 40% left hepatic resection 1/19/10 and I have being taking Anvirzel 0.5mg, SL, q 5 hr. /day( except while sleeping )  since last July.
I have had NO side effects at all, all labs WNL, CT SCAN with contrast every 4 months indicate 'Stable'. I intend to keep taking it until further notice.
I am only too glad that you were there, but do wish that I had been able to attend.
Thank you very much for sharing your knowledge and for the way that you explain things.
Lesley, aka Snezzie.

Even during 6 months ( 8 cycles ) of Gem/Xeloda.

15

(4 replies, posted in Suggestions)

Fantastic idea, Lainy.  I, too am making my list of whom to send them.
Perhaps the more creative of us can design cards for the the next Holiday Season.
If so, I plan to send them around Thanksgiving before everyone goes Holiday shopping and says they're broke !!!!!
I do hope more people read about Lainy's terrific idea , and they too will send out the ecards for our Awareness month.

EXACTLY. ( you made me laugh out loud!)

And I will write a letter, copy it off and get every single person that I can to sign it.
I think that many letters, rather than a petition type of thing might make more of a statement /have a bigger effect.
I'm not "just saying this"  ...i am really going to do it.

Snezzie

I just did 2 things

1) Posted the Huffington article on my Facebook with the words " They should be ashamed of themselves".

2) Went to the Susan B. Komen site --went to "Contact Us"--and in the field that wants a reason for contact, I opted for "Improper Conduct: ( because it goes to GLOBAL HEADQUARTERS ) and wrote something to the effect of " I respected the Foundation no longer because of the lawsuits /The foundation should be ashamed/ my opinion is that this news of the lawsuits will lead to a negative backlash....

I mean, ..................really now. Come on. I think that what they have done is ridiculous.
We are ALL supposed to benefit from the discoveries, medical break-thrus, effects made on behalf of every single person on this earth who has/had/will have cancer.
It just shows how naive I and many others are because I always thought that this "fight", this "race for the cure" was for ALL OF US and not just those of a certain group.
They really should be ashamed in spending a million plus to sue others that out of the goodness of their hearts are striving to do their bit for ALL OF US when that money could be much well better spent.

Jeepers......I'm really pushed out of shape over this..........................so much so, that I am going to tell everyone who will listen to me.

WOW !!!!
Marion--I simply cannot wait until January 20th !!!!
I think that you are marvelous.

Ron, Kathy ----I wholeheartedly agree with you both.  It just goes beyond belief that you, nor Lainy nor myself have ever received any replies. I can only assume that quite a few people have tried to do something---only to be disheartened by the lack of interest or empathy from others. ie talk shows/news stations,etc. and then give up.

Do you think it possible that once the holidays are over, we could seriously brain-storm  and make something happen for February,  CC. Awareness Month?
Ron, you are right--we've got to enlist a great number of people--motivate those who can and are able to help.
Kathy-- it's hard for me to believe that the media did not just grab your story---we've got to change that. Somehow. Some way.

I just read this. I'm going to have to read it again to get the full weight of it....

Please read the article so that we can "brain-storm".
Why can not we contact therm?  To say "Hey! We're over here---come get us!"
Could not the CC Foundation contact them , ORDR?
I wonder why they have not contacted "Us"/the Foundation------Do they not know of us?
Can we somehow send letters, emails, etc. to this ORDR?
Can we incorporate contacting them with CC Awareness Month?

Lainy, Slittle, Duke-------I know we can come up with something.............
I feel that since you have posted about how you have sent letters in the past, emailed all the TV shows , contacted local news stations in the past and none of them even bothered to reply ............that I won't hold my breath waiting for them to reply to my emails----perhaps after you have read the article in MEDICAL UPDATES under CHOLANGIOCARCINOMA at the top of the page.......maybe we can "Stand Up and be Noticed".

20

(6 replies, posted in Chemotherapy)

My question about this topic is that since CC is reported to be the #1cancer of Asia----where the highest documented cases are......wouldn't the pharmaceutical companies here and in Japan want to develope a drug and lead the market?
And since it is the # 1 Cancer in Asia-----why does it appear that the American and British Medical/Oncological fields won't look for information from the Chinese and Japanese Medical field. It appears that there is no exchange of information.
I asked an Oncologist this question and he replied " they lie about their statistics--so we don't bother". 
I mean, really now. Surely, there's got to be more to it than that !

When you have time, please go to SUGGESTIONS and give your input/ideas for CC Awareness Month.

I know that most of us and our caregivers are too over-whelmed and preoccupied to even give it a thought, but perhaps those who can--will.

Thanks, Snezzie

Kris--
You inspire me.  Ever since I first came to this site, reading your posts helped me a great deal--made me smile or gave me valuable information or lifted me up a bit out of that deep, awful black hole
I am almost on the other side of the world from you and at times I think of you and wonder how you are and send you my hope.

Lesley.

Well---today is 12/15---and on 12/4 I emailed the Dr. Oz site and Ellen Degeneres' site and a few weeks prior to that , Oprah's site.
No reply from any as of yet.
I'm so very naive--I imagined that they'd all reply saying "We'd love to help you and let everyone know of CC Awareness Month"" !!!!!!
""We Just Want Better, Faster Treatment and Lots of Survivors "".
This CC Foundation has a 'Young Reseacher" Grant of $50,000.
CANLIV has a similar Grant for $30,000 according to their site.
I think we need more than 1 or 2 grants........
Since I joined this group of amazing people--about 350 people have also joined.
So I'm hoping some of those people will read this and send me some ideas of what
we can  do for the  CC February Awareness Month to ""Stand Up and be Noticed" by the world, the researchers, our communities and the media.
I just feel that while I still feel okay, while I am able, I want to do SOMETHING to help us get "better, faster treatment and lots of suvivors" as Sunshinecaregiver wrote in her post..

Mari -- I have seen 6 Oncologists  in the SF Bay Area and I must tell you that of those 6 doctors, Dr Alan Venook is the only one who does have experience and a detailed knowledge of CC.
I would recommend him with complete confidence.
There is also a Dr Andrew Ko @ UCSF, a colleague of Dr Venook that I have heard very good things about.
Even if you like the doctor that you have the appointment with, PLEASE do get a second and even a third opinion.
I have done quite a lot of research and knowing what I know now------ if I had it to do over again--in all of California--I would have gone to UCSF.  Definately.
Please  keep us informed , Mari.

Snezzie

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(20 replies, posted in General Discussion)

That is the loveliest thing that I have ever read, Lainy.
In my mind's eye, as I read it, I saw the two of you dancing around the sun..