As is the case with any service or product, it is important to weigh your options carefully before deciding on a hospice program.  While nonprofit hospice organizations still exist, in many areas hospice has become a large and lucrative business.  Changes in health care regulations have also placed added pressures on doctors and hospitals to encourge patients to enter hospice rather than continue to receive expensive treatments.  Hospice is often the right decision and many people on this discussion board have found it extremely helpful.  However, make sure you fully understand what services you will receive and what rights you will give up before you sign the paperwork.  This will ensure a less stressful experience and fewer regrets in the future.


(11 replies, posted in Members' Cafe)

Gavin, you brought back happy memories of venison stew with juniper berries at the Clachaig Inn in Glencoe.   As I recall we had some wonderful real ale too.


(4 replies, posted in Insurance)

On June 18, 2014, I attended a webinar on “Navigating Insurance” hosted by Global Genes.  The panelists were Julie Raskin of Congenital Hyperinsulinism International, Stephanie Bozarth of the National MPS Society, and Pam King of Global Patient Strategies.  The following is a brief summary of information provided by the panelists.
Health care costs continue to increase and insurers are taking actions to contain costs, including decreasing the number of providers in their network, eliminating certain drugs from the list of medications covered by insurance, and limiting the amount of medication covered by insurance.  These actions are of particular concern to patients with rare diseases since there may be only a limited number of doctors with expertise in the disease and treatment options may be limited.
If you encounter difficulties with your insurer, you (or your caregiver/family member) must be assertive and be prepared to advocate on your behalf.  Here are a few tips:
-    Form a good relationship with your doctor and his/her staff.  If your doctor thinks it is important for you to see a doctor who is not in your network, he or she can write a letter of medical necessity explaining why treatment outside the network is essential
-    Your doctor can also write a letter of medical necessity requesting use of a medication or treatment not covered by your insurer, including “off label” use of a medication.
-    Obtain information from the organization that advocates for your disease.
-    Call your insurance company and be polite but persistent.    Try to reach someone in a decision making position such as a case manager or medical director.
-    If your insurance is provided by an employer, consult with the employer’s human resources department.
-    If you are having difficulty getting approval for a drug, try contacting the pharmaceutical company that manufactures the drug; some companies provide patient advocates.
-    If your request is denied, obtain information about the insurer’s appeals process and file a formal appeal.  Include as much supporting information as you can.
-    If other avenues fail, consider soliciting support from elected officials or the media.
-    If you are unsuccessful in your attempts to obtain approval for an out-of-network provider, try to negotiate a self-pay rate with the provider in order to reduce your costs.  If your request for a particular drug has been denied, contact the pharmaceutical company that manufactures the drug to see if they can help you with costs.


(8 replies, posted in In Remembrance)

I'm so sorry for your loss Shelley.  I lost my husband three months ago and know what a difficult time this is for you.  Please take care.


(17 replies, posted in In Remembrance)

I'm so sorry Nancy.  I lost my husband Terry to cholangiocarcinoma just three months ago and understand what you are going through.  Time does help.  Take care of yourself during this very difficult time.  Linda


(80 replies, posted in Introductions!)

Hi Olga.  Some people don't express tumor markers such as CA 19-9 or CEA.  My husband's were always in the normal range, even when his disease had progressed.  ALP is one of several liver function tests usually monitored during treatment.  Small fluctuations are often not relevant but they look for trends.  Take care of yourself.  I know how difficult all this is.

On April 30, 2014, I attended a webinar sponsored by the Global Genes Project.  Presenters were Larry LaMotte of the Immune Deficiency Foundation, Joel White of Horizon Government Affairs and James Romano of Patient Services Incorporated.  The following is a summary of information presented.

A study by Kaiser Family Foundation showed that 48% of people in the US had employer-provided health insurance, 5% had private market insurance, 16% had Medicaid, 15% had Medicare and 1% had other public insurance.  About 15% of the people surveyed were uninsured but this figure will drop as a result of the Affordable Care Act.

The Affordable Care Act (ACA).
  The ACA is the most sweeping health care program since Medicare went into effect 50 years ago.  It is a highly contentious law and it will clearly produce winners and losers.  The law requires uninsured individuals to buy coverage or pay a tax.  (There are exemptions to this requirement.)   Employers of 50 or more employees are required to provide affordable coverage to their employees or pay a tax.  The open enrollment period ended March 31, 2014 and the next enrollment period will be November 15 – February 15, 2015.  Changes to enrollment are available within 60 days after a major life event such as marriage, birth or adoption of a child, a move to another state, or certain changes in income.  Acceptable plans under the ACA must provide essential health benefits in ten specified categories and must cap out of pocket expenses (currently $6350 for individual coverage).  Annual and lifetime limits on benefits are no longer permitted and plans can no longer exclude people with pre-existing conditions.  Children can now stay on their parent’s health insurance until the age of 26.

Things to consider when selecting a plan.
  What are the costs of the plan?  Consider premiums, co-payments, co-insurance, deductible, etc.
  What services are covered?
  Are your current doctors in the plan’s network?
  Are the specific treatments you need or may need in the future covered?
  Are the drugs you require covered under medical benefits or pharmacy benefits?  (This is important because benefits may be different for the two categories.)
  If the drugs you require are covered by the pharmacy benefit, what “tier” are they in?  If they are in a high tier, your out-of-pocket costs may be quite high.
  Does the plan require that you try a less expensive drug before it will approve a more expensive one that might be more effective?
  What are the co-payments or co-insurance for the treatments you need?  Note that a co-payment is usually a fixed amount you pay for a specific service (e.g. $30 for a doctor’s visit).  Co-insurance requires you to pay a percentage of the cost of the treatment.  If the treatment is very expensive, the co-insurance requirement could make your costs very high (for example, if the treatment costs $10,000, a 30% co-insurance requirement would make your cost $3000 each time you have the treatment).

How to get information about the plans you are considering.
  Take the time to read the plan summary. 
  Obtain a list of providers covered by the plan.
  Anticipate what treatments and drugs you are likely to need and try to estimate your actual out-of-pocket costs under each plan.
  Write down all of your questions.
  If the insurance is provided by an employer, try to get your Human Resources department to help.
  If you are obtaining insurance under the ACA, try to obtain help from a navigator.  (A place to start is
  Call the insurance company directly and be persistent until you find someone who can answer your questions.  Be your own advocate.
  The Immune Deficiency Foundation has developed an insurance tool kit that may be helpful to people with other rare diseases.  Find it at: … e-toolkit/

Hello all.  I've been out of town for a few days so I'm a bit late in reporting on the webinar.  Unfortunately, I had some technical problems and missed the first part of it but I did receive some useful information and will post it within the next couple of days.  Jenny already gave you the most important information - it's always important to do your homework when chosing a health insurance plan and it's even more crucial for cancer patients.  I'll provide more details soon.

I'm glad you found this helpful.  As some of you may know, my husband Terry died of cholangiocarcinoma on February 15.  He was the most optimistic person I have ever known but he did realize the importance of advance planning.  The steps we took to make sure all of our affairs were in order have made my life much easier during the past 2 1/2 months.  I am also fortunate to know that the decisions I made about his care at the end of his life were in accordance with his wishes.  This gives me a great deal of peace.

On April 23, 2014, I attended a webinar on advance planning sponsored by the Cancer Legal Resource Center and thought some of you might find the information provided helpful.

Many people avoid the subject of advance planning but it is necessary to ensure that your property is protected and your health care directives are carried out if you are incapacitated, and that your estate is distributed in accordance with your wishes after your death.  The Cancer Legal Resource Center strongly recommends you consult with an attorney regarding advance planning. 

Estate Planning
Your estate includes your bank accounts, safe deposit boxes, stocks, and other assets that are maintained in your name alone.  Assets that are jointly owned (which pass directly to the surviving owner) and assets with a designated beneficiary (life insurance, IRAs) are not included in your estate.

A will is a written document specifying how you want your estate distributed after your death.  To be valid a will must comply with the requirements of your state.  Most states require that it be in writing and that it be witnessed by disinterested parties.  If you have a valid will in place, it is important to review it periodically to make sure it still reflects your wishes.  If you die intestate (i.e., without a will), the laws of your state will determine how your estate is distributed.  In general, an estate covered by a will or the estate of a person who died without a will must go through probate.  Some states have simplified procedures for small estates.

A trust is a fiduciary relationship in which one party (the trustor) gives another party (the trustee) the right to hold title to property or assets for the benefit of a third party (the beneficiary).  Property covered by a trust does not go through the probate process and information about it is not public.   Although a trust generally covers only that property that has been transferred to the trust, it is possible to prepare a “pour over” will that will transfer property to the trust upon your death.  Generally it costs more to establish a trust than it does to prepare a will but a trust may save money later as probate costs will be avoided.

Protecting your property if you are incapacitated
A Power of Attorney for financial affairs is a document designating an agent to act for you in the event you become incapacitated. It must be signed and witnessed in accordance with the laws of your state.  A springing Power of Attorney (the most common type) becomes effective only when you become incapacitated while a durable Power of Attorney becomes effective immediately.  A Power of Attorney ends upon your death.

Health Care Directives

Power of Attorney for Health Care.  This is a document designating a person to make decisions regarding your care in the event you are unable to do so.  You can include specific instructions or provide only general guidance.)  In general you have the following rights regarding end-of-life care: the right to palliative care, the right to refuse food, the right to refuse medical treatment, the right to palliative sedation, and the right to have your wishes upheld.

Physician’s Order for Life Sustaining Treatment (POLST).  Forty states have a procedure whereby a patient and physician can agree on life sustaining treatment and sign a form that has the effect of a medical order.   

Death with Dignity/Aid in Dying.  A few states permit assisted suicide under certain circumstances. 

Cancer Legal Resource Center – 866-999-3752 (toll-free) or
Caring Connections:
Compassion and Choices (end of life issues):


(39 replies, posted in General Discussion)

My thoughts are with you Percy.  I will always be grateful for all the good advice you provided during my husband's illness and I hope you will be able to keep helping others for a very long time.  Take care.  Linda

Hi Judith.  I would suggest you post your questions in the introductions section of the board as you may receive more responses.  The discussion  board tends to be a bit quiet on the weekend but you will hear from many people on Monday, including many famliar with doctors and hospitals in LA.  Cholangiocarcinoma and hepatocullar carcinoma are different diseases.  There are several different types of cholangiocarcinoma, including hilar.  You will receive a great deal of help and support on this board so be sure to post any questions you may have.


(17 replies, posted in General Discussion)

I'm so sorry for your loss Michele. I know we exchanged some posts a few weeks ago when our husbands were both so ill.  My husband Terry died on February 15.  I thought I was prepared but it was still such a shock when it actually happened.   Please know that you are in my thoughts as is Stella.  It's hard to be strong but we will all get through this somehow.


(2 replies, posted in Events & Fundraising)

Thanks Marion.  I thought you were out of town or I would have contacted you in the first place.  It's possible they made some errors in entering the information or used an incompatible browser.  I just wanted to report the feedback I received in case there was a problem with the site.


(2 replies, posted in Events & Fundraising)

In my husband's obituary, I requested donations to the Cholangiocarcinoma Foundation in lieu of flowers.  A couple of people have told me that they have had trouble making on-line donations.  They said they were unable to indicate that the donations were in memory of my husband and are concerned that I will not receive notice of the donations.  Have there been problems with the on-line donation site?  I'm not sure who I should contact about this.  I want to make sure I receive a list of all donations so I can thank the donors.  Thanks.


(12 replies, posted in Grief Management)

Ladies - Your comments have been very helpful to me.  Tomorrow will be two weeks since Terry died.  The first week I did very well - lots of people around and so much to do.  This week has been harder.  I've discovered the best thing is to just figure out how to get through each day and not think too much about the future at this point.  I've joined a bereavement support group too - all people who lost their husbands or wives to cancer - and it has been helpful to talk with others who understand.  It's hard but I know I will be OK.


(28 replies, posted in General Discussion)

Wishing you the very best, Lainy.  You provide so much support to everyone on this board.  Now it's time to focus on taking care of yourself.  Remember there are many people here who care about you.   Linda


(15 replies, posted in In Remembrance)

Thank you so much for your kind responses.  We have planned a memorial service and reception at the beautiful Morton Arboretum, one of Terry's favorite places.  In the event anyone would like to read Terry's obituary, here is the link: … h_id=12920


(15 replies, posted in In Remembrance)

My husband Terry died this morning.  Terry was a vital and extraordinary man.  He played classical guitar, wrote a novel and raised orchids.  He was a gourmet cook and he loved hiking, animals, nature and travel.  He was one of those rare people who actually loved his work and, as a neuropsychologist, he helped many people throughout the years.  He was diagnosed with cholangiocarcinoma in October 2011 and he never let the disease destroy his spirit or his dreams.  He loved life and he lived it well until the end.  His death was peaceful and serene and I had the privilege of holding him in my arms as he passed away.

Hello Michele.  I'm so sorry things have reached this point for you.  I am in almost the exact same position and it is the hardest thing I have ever experienced.   I love my husband so much and it breaks my heart to see him the way he is now.  I know you must be feeing the same way about your husband.  I think this will the greatest challenge we ever face but we will get through this somehow.  Please take care of yourself.  Linda

Thank you Willow and Kris for the helpful responses.  They have put him on Lactulose and it is helping a great deal.  His amonia has decreased from 115 to 49 and his memory and lucidity are greatly improved.  At my request they have taken him off Dilaudid as it seemed to cause very vivid dreams that resulted in confusion.  Fortunately he has only mild pain at this point that is easily controlled by milder forms of pain relief.  I hadn't thought about the possible relationship between draining the ascites and the lower blood pressure but that may be part of the problem.

Hello all.  As I said in my previous post, my husband is not doing very well but we are trying to make him as comfortable as possible.  I'd appreciate any advice you might have on a couple of issues.
First, he had ascites drained twice and the decision was made to insert a permanent drain.  Unfortunately, due to high amonia, the effects of anesthesia, and pain medication, he tore the drain out the same night and the doctor doesn't want to try it again.  However, the liquid in the abdomen is currently draining through the hole where the drain was into an ostomy bag and this seems to solving the problem for the moment.  Has anyone else experienced anything like this? 
Second, he is experiencing low blood pressure which drops when he stands, making him dizzy.  The doctor says this is due to the compression caused by the tumors and there is nothing that can be done about it.  Has anyone else had this problem and were they able to address it in any way?
As always, thanks for any help you can provide.

My husband Terry has fought hard for over two years with surgery, radiation and chemo but we have run out of options and are now concetrating on palliative care.  Terry's chemo ended in early October due to rising bilirubin levels.  Although he had many scans and other tests in an effort to identify a way to bypass the blockage of the bile ducts, we learned that the problem was due to compression of the tumors in the liver on the bile ducts and there was no available treatment.  During the past three months, he has had good periods when we were able to get out of the house and to socialize with friends and family as well as more difficult periods.
Last week, however, he became very ill so I took him to the ER.  His bilirubin is now over 13 and is continuing to rise and he is quite jaundiced.  He has experienced increasing confusion and memory loss  that is being treated with laculose.  He has also developed very low blood pressure that becomes worse if he tries to stand and we have been told this cannot be corrected.  His ascites had increased a great deal and were drained twice while in the hospital, giving him a greatly increased level of comfort.  At my request, yesterday they installed a drain so the fluid can be drained in a bottle, thus eliminating the need for further hospital procedures.  A surprising effect of the drainage of the ascites is that his ability to eat seems to have been restored.  For months he has been living on liquid supplements, yogurt etc. As soon as the ascites were drained, he ate a chicken sandwich and he has been eating well ever since.  I wish we had done this earlier.
We think he will be discharged from the hospital today and the plan is to move him to a rehab facility for a week or so.  We are not optimistic that he will benefit much from rehab at this point but it will buy me some time to set up home health care.  I know that many of you have had good experiences with hospice and I may consider it at some point but, based on a previous negative experience with hospice for my mother, I would prefer to avoid it as long as I can.  Fortunately, I will be able to hire caregivers to help me through this process.  We don't have children and there are few family members nearby so I will need some help.
Despite all that is happening to him, my husband refuses to believe he will not recover.  The aide at the hospital told me he said he plans to return to work as soon as he gets better.  It breaks my heart when he says things like this but maybe he needs to retain a little bit of hope to get through this period.
I haven't posted for quite some time but it has helped me to put these thoughts in writing.  This discussion board has been a wonderful resource for us and, once all this is over, I hope to return to doing some advocacy work for the Cholangiocarcinoma Foundation.


(5 replies, posted in Members' Cafe)

Wishing you and all on this board a very Merry Christmas!

Hello all.  My husband has been trying very hard to eat and maintain his weight but is experiencing the sensation of a lump in his throat that makes swallowing unpleasant.   The doctor says his digestive problems are likely caused by pressure from his liver tumors on his stomach.  (He is not currently on chemo or radiation so they are not factors here.)  He takes Prilosec every day and we have tried tried Zofran, Ativan, small meals, warm liquids, and everything else I could think of but so far nothing has really helped.  He drinks Boost and is able to manage yogurt, soup and a few other foods in order to meet minimum calorie needs but I would really like to see him enjoy eating again.  Any suggestions will be greatly appreciated.