Our New Discussion Board is HERE

[Xtcinla]

 

Hi,

My name is Matthew and my 90-year-old father, Jim, was just diagnosed with stage 3 Cholangiocarcinoma on Monday. The doctors say he is not a candidate for surgery, chemo or radiation. He is seeing an interventional radiologist next week. I am trying to find out any info on this cancer and any types of treatment that might be available to him. I know he is old but I’m not ready to lose him yet. Any help would be greatly appreciated.

[DanaG]

Hi Mary,

Thanks so much for the information. We’re still waiting for a decision from the insurance company on MD Anderson, but the Specialist Map was very helpful in identifying other options in case MDA doesn’t work out.

Thanks to you and the foundation for being a source of support.

Best,

Dana

[bglass]

Hi Dana,

Welcome to our community.  I am sorry to hear about your mother’s diagnosis.

You are right to point out the need to find a doctor experienced with cholangiocarcinoma.  The Cholangiocarcinoma Foundation website just posted a great new tool that can help you identify medical providers with cholangiocarcinoma experience.  Here is the link:

Specialist Map

As you can see, there are some specialists in the Fort Lauderdale area.  I recall a few patients in Florida who have posted on the board have been treated at Moffitt in Tampa.

Generally once diagnosed, it is important to get a surgical opinion if the cancer is just in the liver and bile ducts, to see if it can be removed surgically.  If the cancer has spread or if its location in the liver makes surgery impossible, then other treatments – usually chemo but sometimes radiation – are brought to bear.

I hope you have been able to take a look at the many resources on the Foundation website for newly diagnosed patients and their caregivers.  Please keep us posted on how your mother is doing and send any questions our way.

Regards, Mary

[DanaG]

Hi All,

I hope I’m posting in the right place, but if not, please feel free to redirect me.

My mother, age 70, was recently diagnosed with cholangiocarcinoma. We are heartbroken and looking for the best place for her to receive care.

My parents live in Fort Lauderdale, Florida, but we are trying to get her to MD Anderson in Houston, however the insurance company is still reviewing the out-of-network financial agreement, which apparently is much higher than they typically pay.

It took 5+ weeks from when we first saw her oncologist in Florida to get the CC diagnosis. In the mean time, he thought she had metastatic colon cancer to the liver and has been treating her with the associated chemo regimen. He said she is “responding well”, but that it’s the second- versus first-line treatment for CC. He wants to look at one more round of labs before deciding whether to switch her to first line. I’m thinking that first-line is the way to go since I haven’t read great things about second-line. This is one of the many reasons that we’re eager to get her to a cancer center with a multidisciplinary team and CC specialists.

In case we’re not able to go to MDA, I’m wondering if anyone could provide some alternatives within Florida. Do you know which is the best place in Florida to receive care for cholangiocarcinoma? Since it’s such a rare cancer, we want to make sure we go somewhere with the best possible specialists.

Thanks so much,

Dana

[bglass]

Hi Lucretia,

Welcome to our community.  I am sorry Chris is experiencing so much pain.

There are different approaches doctors can take and different meds that can be tried.  Not being a doctor, I don’t have the background to suggest any specific pain treatment.  But something in your story did stand out to me – that Chris is ending up in the emergency room when his pain is unbearable.  I am wondering if your hospital has a palliative care practice that can be called in to your husband’s case to work on pain and quality of life issues.  Most hospitals have this.  It is sometimes also called a pain management practice.  My concern is that emergency room doctors may not be in the best position to handle a complex, long-term pain issue.

Your husband may consider seeking help from a palliative care doctor (these folks specialize in pain and other symptom relief).  This need not wait until he suffers an episode of intense pain.  For our cancer, pain relief can be brought through medication, or in some cases (e.g., bone mets) with radiation, or with other types of treatments.

I hope Chris’ doctors can do a better job of getting his pain under control.  It is regretfully sometimes a trial and error process – patients need to be proactive and to insist on additional help when the first attempt, or the second or third, does not work out well enough to keep pain in check.

Best wishes and prayers you and your husband find relief for his pain.

Regards, Mary

[gavin]

Dear Shortcanuck,

I too am sorry to hear the news of the passing of your husband. Please accept my deepest condolences. We do have Dr Giles here on the site who may be able to help you with coping right now. He can be found here on this page –

https://cholangiocarcinoma.org/for-patients/ask-dr-giles/

Please do not worry about posting on the right or wrong page. We also have a board here that may also be of help to you right now as well –

Grief Management

My thoughts are with you and your family right now.

Gavin

[bglass]

Hi Shortcanuck,

I am so sorry to hear this sad news about your beloved husband.  Please accept my condolences.

I sent you a private message concerning your question.

Take care, regards, Mary

 

[Shortcanuck]

My sweet, loving, funny husband died 3 weeks ago, 9 months to the day after diagnosis. Is there someone here I could talk to?  I feel like I can’t breathe sometimes. Not sure I’m posting in correct section

[bglass]

Hi Arlyn,

So happy you found our community, but I am sorry to hear that your father was diagnosed with cholangiocarcinoma.  I hope you and your family find the resources on the Cholangiocarcinoma Foundation website for newly diagnosed patients helpful.

As you may already be aware, job one with this diagnosis is lining up medical providers who are experienced with this rare cancer.  This usually means working with doctors at a major cancer facility.

Treatment options have multiplied for this cancer, so the outlook is more hopeful than in the past.  I know your care and support will be invaluable for your father, especially with your medical background.  As many of us here have learned, the medical maze can be challenging with a rare illness.

Please let us know how your father is doing, and if you have concerns or questions, the community on this board is here to help.

Take care, regards, Mary

[Sarwithketchup]

Hi everyone. My name is Arlyn.  I just found out my 63 year old father was diagnosed with Cholangiocarcinoma this past Thursday.   I feel like my world has been turned upside down.  I don’t know the details of it yet–just know he had a biopsy to confirm it last week.  I am a nurse practitioner that works in primary care in Southern California and am planning to move back home to Northern California.  Reading the posts and seeing all the support on this site is giving me hope and helping me to stay strong.  I am hoping to relay some of that hope and strength to him.

[bglass]

Hi Katrina,

Welcome to the new format of the discussion board.  Since it is new, we are still getting used to it – if you have suggestions or questions, there is now a place on the right-hand side that tells you how to contact the administrator (Rick).  Any suggestions are most appreciated.

To add a posting to an existing chain, look for a button at the top right-hand side that says “reply.”  Or scroll down to the very bottom of the thread and you will see the box for the reply.  Your new entry will then appear at the top of the chain and will also be flagged on the beta page that lists the newest topics and postings.

I looked at your earlier messages and some other users did use that same thread to discuss and update their own stories.  The moderators very occasionally move a posting if it fits better under a different heading – e.g., a posting about chemo appears under the radiation topic.  I will look into whether we can separate out your reports on your current treatment into their own topic so that info is easier for others to find and follow.

Looking forward to hearing your update!  Regards, Mary

[katrina]

I am now signed into the New Discussion Board.  I wanted to give a positive update to my entry in What’s Working Now, but I didn’t see a Posting ability.  Please confirm what to do.   I do hope that the entries now come with the most recent posts first and that posts are appropriate to the topic of the Discussion Board subject (or moved).  Hope to see you all at the conference!

[Cait]

Huzzah!  Super exciting. 🙂

Congrats to Rick and team for an awesome end result, and thank you for your efforts in getting this new site up and running.  Everything looks great!

[gavin]

Thanks Rick! New board looks great and it must have taken a TON of work to get here! Looking forward to the new features as well!

 

Thanks to all,

 

Gavin

[bglass]

Rick,

Congratulations!  The new version looks great.  Thanks for helping with logins.

Regards, Mary

 

 

 

 

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