1

(21 replies, posted in General Discussion)

Porter......excellent news - wonderful timing.  Thrilling to know that your Holiday is that of a wonderful occasion exactly as it should be. 
Hugs and love,
Marion

Quality of Life studies are included in all Phase III trials.  Unfortunately though - that carries over to most rare diseases -  at present our cancer has few Phase III trials.Therefore; we miss the necessary data to make decisions based on the treatment outcome of a large group of people and for that reason it is difficult to decide on a specific protocol. 
The Cholangiocarcinoma Foundation International Patient Registry provides one resource to patients, as the de-identified information is available to each registrant.  With time we hope to have encouraged each and every patient/caregiver - no matter their place of residence, globally - to participate in this important registry. 
Hugs,
Marion

Kate...looks like the study is closed to enrollment, but take a look:
http://sarahcannonresearch.co.uk/for-pa … al-trials/
and this: http://www.cancerresearchuk.org/science … anding-and
Hugs,
Marion

Ha, ha....Duke, seems that we have to reach way beyond of what we had every thought to want to know. 
Hugs,
Marion

5

(14 replies, posted in In Remembrance)

Correct, Gavin.  I think that this is where the problem seems to occur.  But, I have reached out to our Social Media Team to make sure that we have addressed it correctly.   
Hugs,
Marion

6

(4 replies, posted in General Discussion)

Sandie....this happens frequently when chemotherapy has reached maximum benefit, hence physicians switch to one or more of the other available drugs.  Have you consulted with an oncology radiologist as well? 
Hugs,
Marion

7

(14 replies, posted in In Remembrance)

Catherine.....thanks for all you do as well. It appears that the donor's State shows up rather than that of the recipient.  I will check into this. 
Hugs,
Marion

8

(4 replies, posted in Members' Cafe)

Dakotabean.....heartbreaking to hear.  What are the reasons given for the dismissal?
Hugs,
Marion

Golden Girl....  Already you are aware that this disease is difficult to detect and based on the disease presentation, various options may or may not be available.  In order to help you understand, the Cholangiocarcinoma Foundation in conjunction with Dr. Albou-Alfa is presenting a biliary book:
Free complimentary Book or e-mail download:
http://cholangiocarcinoma.org/news/foun … resources/
As your Mom has stents, it is important to have on hand the biliary emergency card. 
Biliary drainage – stent information card
http://cholangiocarcinoma.org/biliary-e … tion-card/
Additionally, you may want to register and therefore be able to read up on the de-identified information of others:
The International Cholangiocarcinoma Registry
http://cholangiocarcinoma.org/professio … -registry/
We are in this together - we are here to help.
Hugs,
Marion

10

(7 replies, posted in In Remembrance)

Carl.....It is said that grief is the price we pay for love.  And I say that our hearts and brain are not synchronized and although we can intellectualize the meaning of this powerful statement, we simply can't reason with a broken heart.  Be kind to yourself, dear Carl.  This is the first Christmas without Lynn's physical presence.  It is bound to hurt.  It is a fact that the "first" of everything (Holiday, Birthday, and all other celebratory days) are the worst to experience.  And, then it eases. the pain stays, but the frequency of the experience lessens with time.  You too will re-energize, dear Carl, it simply takes time.   
Hugs,
Marion

11

(4 replies, posted in Announcements)

Julia....so nice to hear from you and to know that these two candles are lit in memory of two wonderful people. Thank you.  How is your Mum coming along?
Hugs,
Marion

Sam.....the vomiting may be related to a blockage due to tumor growth or there may be an actual physical blockage which may be able to be addressed with stenting.  Either way, it is unlikely for the vomiting to stop on it's own and as Crissie mentioned, it is unlikely to recede on it's own and unlikely to respond to anti-nausea medication.   I am sorry to hear of the pain your Dad is encountering - definitely it has to be addressed.  There is plenty of medication available to keep your Dad comfortable. 
No one knows for sure, but I agree with the others in that things are moving rather rapidly.
My heart is with you.
Hugs,
Marion

13

(7 replies, posted in General Discussion)

Mandy......my heart aches for you and your family.  May all begin to heal ...one day at time.
Hugs and love,
Marion

Thanks, Gavin for always being on top of the situation.  I will ask Rick to do as you suggested.
Hugs,
Marion

Can't recall the publisher, but thought to place it here anyway.  Good explanation of the different types of Imaging:

C-T (CAT) Scans - CT stands for computed or computerized tomography. This is essentially a series of X-rays in "slices" through the body, which are then analyzed by a computer, and an image constructed from the data. It can show the precise location of a tumor, its shape, and whether it is solid or hollow. Although it can give clues as to whether or not a tumor is cancerous, only a biopsy can tell for sure.

Procedure - Usually before the test, a contrast medium is given, either as a drink or through a vein or port. When it's time, the person being tested lies down on a special table while the scanner is rotated around them. This usually takes around 15-20 minutes, although it can be shorter or longer depending upon how much of the body is being scanned.

Drawbacks - A CT scan is not reliable in helping to find tumors that are less than 2 cm. in size. Additionally, some find the contrast drink unpalatable. (Tip: There are several different contrast substances that can be used, and sometimes this problem can be helped by switching.)

MRI (Magnetic Resonance Imaging) Scans - MRI scans use magnets rather than X-rays to produce the image. The strength of the magnetic field causes the atoms of the body to respond, and the emissions are detected by the scanner, which are analyzed, and an image is produced. In many tissues, the image and detail are clearer with an MRI than a CT scan.

Procedure - The person to be tested lies on a table, which slides into the opening of a narrow cylinder. Loud noises are heard during the scan, which lasts approximately 30 minutes, although this, again, depends on the size of the area being scanned.

Drawbacks - For some tissues, a MRI image is not as clear as that of a CT. It is more difficult to differentiate inflammation and scar tissue from tumors on a MRI image. Also, it generally cannot be used on anyone who has metal implants in their body. People who have a difficult time in close places sometimes have a hard time coping with the MRI. The MRI is also more expensive than the CT.

PET (Positron Emission Tomography) Scans - This technology uses radioactive positrons (positively charged particles) to detect differences in metabolic and chemical activity in the body. An area with increased activity will show on a colored image. Notice that this is a distinct difference from other kinds of imaging - whereas CT and MRI scans look at structures in the body, a PET scan looks at function. Since cancer cells tend to divide more rapidly than other cells, they will generally show as having more metabolic activity. PETs can pick up very small areas of activity - much smaller than either of the above methods. They are also very good at differentiating scar tissue, which has very little metabolic activity.

Procedure - The person to be scanned lies on a table, which moves through a ring-shaped scanner. After a few minutes, a radioisotope called a tracer is inhaled or injected into a vein. (This substance will clear from the body rapidly as it has a short "half-life".) The scan then continues with the tracer active. The entire procedure can take anywhere from 30 minutes to two hours, depending upon the size of the body part being scanned.

Drawbacks - Frankly, the main drawbacks to PET scans are accessibility and expense. Until recently, PET was mainly used as a research tool. It is very expensive (often above $3000 per scan) and many areas do not yet have access to them. Even when PETs are available, insurance does not always cover them. Among other problems with PET: 1) that the image is not as clear as with CT scans and MRI, so sometimes localizing the exact place of the increased activity can be a problem 2) it takes more training to learn to read them well 3) since inflammation shows as "hot" on a PET scan, if there is a lot of inflammation present it can obscure other activity on the scan and 4) it tends to work better for higher grade tumors and metastasis, as well-differentiated tumors have less metabolic activity (they are usually growing more slowly).

Still, the prospects for PET scans being able to find cancer that goes undetected by other technologies is exciting, and the use of PETs will probably grow quite rapidly. At this point, many people are having success getting approval for PETs if their doctors submit a request as a necessary procedure.

NEW! CAT/PET Combo Scans! - The current "wave of the future" is a new type of scan that combines the technologies of CT and PET. Superimposing the images of function on structure seems to give the best of both worlds - the anatomical detail of the CT and the ability to find small clumps of cancer cells of the PET. (See sidebar for article) This type of scan is not yet widely available, but many hospitals have plans to add them in the coming months.
Hugs,
Marion
--

Christian....Cancer is tough not only on the patient but the caregiver as well.  Take care of yourself, you deserve it.  The below may give you some comfort:


Caregiver's Bill of Rights

I have the right to take care of myself.  This is not an act of selfishness.  It will give me the ability to take better care of my loved one.

I have the right to seek help from others even though my loved one may object.  I know the limits of my endurance and strength.

I have the right to maintain parts of my own life that do not include the person I care for just as if he/she was healthy.  I know that I do everything that I reasonably can do for this person.  I have the right to do some things for myself.

I have the right to get angry, be depressed, and express difficult feelings once in a while.

I have the right to reject any attempt by my loved one to make me do things out of guilt or anger.  (It doesn't matter is she/he knows they are doing it or not.)

I have the right to get considerations, affection, forgiveness, and acceptance for what I do for my loved one, as I offer these in return.

I have the right to take pride in what I am doing.  And I have the right to applaud the courage it has taken to meet the needs of my loved one.

I have the right to protect my individuality.  I also have the right to a life that will sustain me when my loved one no longer needs my full-time help.

Author unknown.
National Cancer Institute
Support for caregivers

Great idea, Kris.  We could retitle it: " 100 ways you know ........"
Perhaps others will join in as well.
Hugs,
Marion

yikes.....this is hair raising.  In regards to the majority of comments -  sensitivity training comes to mind.   In all other regards:  today's patients are much smarter than ever before, they are entitled to know the truth and all of the truth. 
I am so sorry, Chuck, no one should have to encounter such a visit.
Hugs,
Marion

Emily Hollenberg, Cancer Survivor

10. Even though he/she is wearing a white lab coat and not a military uniform, words like battle, fight, war and weapons are frequently used in the conversation.

9. You know that your doctor is an oncologist at a medical center when he/she uses "oma" words like carcinoma, lymphoma and melanoma instead of cancer.

8. He/she tries to explain to you why a low grade is better than a high grade on your path report. (I could have used that approach explaining my grades to my parents.)

7. He/she wants you to be excited when your tests come back negative not positive, of course this does not fit with most life experiences when you know it is better to be positive than negative.

6. He/she talks a lot about trials and as far as you know is not a lawyer or a judge.

5. When shaking hands with you at your initial appointment, you have a feeling that your veins are being checked out.

4. Asks you if you want a port and you know that this is not an invitation to have a drink.

3. Tells you that you will get a series of treatments and you keep wondering where the "treat" part comes in.

2. Tells you that you are on a protocol and it doesn't seem to fit with the dictionary definition. Protocol: form of ceremony and etiquette observed by diplomats and heads of state.

1. Has you sign a consent form for treatment that is more intimidating than the diagnosis

Based on your fantastic response to chemo I expect all things to continue this well too.   Great news all the way around. 
Hugs,
Marion

PatientACCESS is an initiative between six publishers: ASCO, the American Association for Cancer Research (AACR), Elsevier, SAGE, Wiley and Wolters Kluwer Health, as well as the Copyright Clearance Center (CCC).
Conquer Cancer Foundation is pleased to provide patients being treated for cancer and their caregivers with free access to medical research articles published in ASCO’s Journal of Clinical Oncology (JCO).
http://www.cancer.net/research-and-advo … ientaccess

What is "Scanxiety"?

In this podcast, Dr. Schapira shares tips for handling the stress that you may experience.
http://www.cancer.net/blog/2014-12/expe … +scanxiety

23

(9 replies, posted in Introductions!)

Mike.... Never has there been anyone on this site with tumor markers at that level reducing to such low count.  Incredible and fantastic!   
Hugs,
Marion

Research Advocacy 101 is a video resource developed to provide information about research advocacy at NCI.  Some highlights of this video series include:

·       A discussion of the history of advocacy
·       The definition of research advocacy
·       An explanation of the roles and responsibilities of research advocates at NCI
        A description of the value of advocacy in cancer research
·       Information on how to become a research advocate at NCI

Marion

25

(9 replies, posted in Introductions!)

Mike.....fantastic results.  So glad you joined our site to spread this wonderful news and interact with us.  I wish for many more conversations coming our way.  On to a wonderful Holiday Season.
Hugs,
Marion