1

(8 replies, posted in General Discussion)

Jen...what a wonderful and welcome surprise to hear from you.  I can't believe Alyssa is three years old. Agree, where has the time gone.   She is beautiful. 
We miss your lovely postings, but understand that life must go on and so it does, but our hearts are filled with memories of those we loved so much.  This will never change.
Hugs,
Marion

2

(8 replies, posted in General Discussion)

Beatriz....great work and wonderful results.  Congratulations. 

In regards to stent questions:  Most often the procedure is successful, only rare cases require a biliary drainage tube.   However; your father should carry with him (at all times) the Biliary Emergency Information Card.  Please read the information contained in the below link. 
http://cholangiocarcinoma.org/biliary-e … tion-card/

You are a wonderful advocate for your Dad, dear Beatriz.

Hugs
Marion

http://www.dailymail.co.uk/health/artic … rvive.html

ArQule (ARQL) Announces Presentation of ARQ 087 Phase 1/2 Data at ESMO Congress

http://www.streetinsider.com/Corporate+ … 66689.html

Kris.....shrinkage sounds great. Lesion may have been there, but due to 1 cm CT thickness of plate, it was undetectable until now.  Wonder what the acities is all about, but we have seen this come and go with other patients as well.  Have you left the hospital or are they holding you hostage for a bit longer yet?
Hugs,
Marion

shelliec....you are welcome.  Also wanted to mention that  TAPUR study sites are predominantly in the State of Michigan. 

Hugs,
Marion

As of June 6, forty-nine patients consented to participate in the TAPUR study and and as of now  thirty-seven sites are participating twelve weeks post-launch.

  “TAPUR addresses a critical priority for achieving the promise of precision medicine: identifying existing, effective treatments for cancers based on their genomic profiles,” said ASCO Chief Medical Officer Richard L. Schilsky, MD, FASCO.

This video explains more:
https://www.youtube.com/watch?v=Y8cnmC8 … e=youtu.be

What is ClinicalTrials.gov? https://www.nlm.nih.gov/services/ctwhatis.html

How do I sign up for a clinical trial listed on ClinicalTrials.gov? https://www.nlm.nih.gov/services/ctsignup.html

Does ClinicalTrials.gov provide advice for specific medical conditions?
https://www.nlm.nih.gov/services/ctadvice.html

What makes ClinicalTrials.gov different from other clinical trials resources?
https://www.nlm.nih.gov/services/ctdif.html

How do I find Clinical Trial Results?
https://www.nlm.nih.gov/services/ctresults.html

How do I access ClinicalTrials.gov and is there a charge?
https://www.nlm.nih.gov/services/ctaccess.html

Is ClinicalTrials.gov accessible to users with disabilities?
https://www.nlm.nih.gov/services/ctguide.html

How do I search and use ClinicalTrials.gov?
https://www.nlm.nih.gov/services/ctsearch.html

How do I find  Studies on a Particular Disease or Condition, Using Specific Treatments, or near my Home?
https://www.nlm.nih.gov/services/ctfind.html

Do I need to know medical terminology to search ClinicalTrials.gov?
https://www.nlm.nih.gov/services/ctterm.html

Can I get in contact directly with the sponsor of a study?
https://www.nlm.nih.gov/services/ctcontact.html

Shelliec....please don't despair, think chronic disease and pursue other options, perhaps a clinical trial. 

1.  ASCO Tapur study:  Please see below link:
http://www.cholangiocarcinoma.org/punbb … p?id=14023

2.  NCI MATCH:  Please see below link:
http://www.cholangiocarcinoma.org/punbb … p?id=13860

3.   a clinical trial based on molecular markers obtained from tumor tissue analyses. 

Hang in there, treatment options are plenty - finding the right path requires  time and perseverance. 

Hugs,
Marion

10

(18 replies, posted in Introductions!)

Lynn..... I will begin answering some of your questions, but truly hope for others to chime in with their own thoughts.  The collective wisdom of our members is of significant value to all and by far supersedes that of my personal opinion.

The good news, dear Lynn, is that your husband feels great.  Being that the cancer is systemic, the likelihood of metastases is high, but there is no clear path answer as to where and when it will pop up. 
In this case though;  the disease moved to the bones, a not so uncommon turn of events.   Disease progression varies; some patients don't feel physically impaired and continue to do well until they experience pain associated with cancer to the bones.

Now, you are revisiting the question of chemotherapy and whether it is tolerable and whether it has an affect on your husband's metastases. 

In general (but not true in all cases) bone metastases are treated with radiation with fairly good results.

You may also want to look at previous postings obtainable by means of  our search function, top bar.

Nice to hear of the upcoming trip and Greg's incredible attitude, it has served him well.  I couldn't agree with you more, Golden Retrievers are the best for emotional support.

Hugs,
Marion

Anne....thanks so much, the information given is of great help to us.
In regards to change of treatments:  This is a decision you must make with the treating physician.  Given the fact that there is a positive response, I doubt that he/she will stop the course of treatment.  Something is working, best to stick with it.  Again, this is my personal opinion only and all information must be be verified by the experts treating your dear husband.

Hugs to you,
Marion

Kris....I like your unofficial results.  Perhaps the measurements will reveal partial response - 30% decrease in the sum of the longest diameter of targeted lesions.  That's what I am hoping for.

If not so, then stable disease - small changes that do not equal a decrease of 30%.   
In any case, I believe you would stay on the trial.

On another note:  In your honor,I  have given up cheese and pizza.  No regrets on my end.   

Hugs
Marion

Steven......you are on the  "roller coaster ride" with this cancer.  So sorry to hear of the unfortunate circumstances leading to the ineligibility for enrollment in the mentioned trials.  Ultimately though, your Mom has to be in an acceptable physical condition to participate in a clinical research study.   She is a fighter and so are you, but in order to reap benefit from an experimental study, all requirements have to be met.

There is good news in that the fluid-buildup is aggressively  addressed, lending of hope for a better week coming your way. 

I hope for others to chime in regards to expedition of approval for the Merck Access Program.

From what I have learned, the requesting physician is your best asset in moving things forward as quickly as possible.

Fingers are crossed, dear Steven, and please keep us posted. We are in this together.

Hugs,
Marion

14

(8 replies, posted in General Discussion)

Beatriz.....already you have moved mountains, great job. I so much agree with you in that working through the maze of healthcare related issues requires a substantial amount of energy, time and a good dose of perseverance.   And, we  continuously need to  follow-up on  specifics, as someone we depend on may miss something of importance causing a slow down of the entire process.
Thanks for keeping us informed, dear Beatriz.  Love that name!

Fingers are crossed for things to move smoothly and for you personal report to come back as non-malignant. 

Hugs,
Marion

Anne....perhaps the link is not available outside the US, if so, please let me know. 
Thanks, Anne, for allowing more insight to your husband's physical history prior to the diagnoses of choangiocarcinoma/bile duct cancer.
Early detection is the key, but it rarely happens.  Rare cancers are troubled by specific challenges not only for the patient, but for science and physician as well. 

Notably, there are no reliable screening tests for early diagnoses, but we want it to be known that that following symptoms should always raise a suspicion of a hepatobiliary malignancy:

Cholestasis
Pale-colored stools
Passage of dark urine
Upper gastrointestinal pain  (dull ache in the upper right quadrant)
Weight loss
Anorexia
General Malaise

We are trying to get the word out to each and every physician, but we are saddled with immense difficulties in how to go about it and whom to involve with this task.  Any suggestions are welcome. 

Anne, your English skills are excellent.  Please, share with us your thoughts on living with cancer.
Thanks much,
Hugs,
Marion

16

(8 replies, posted in General Discussion)

Beatriz......possible malignant thyroid diagnoses and your beloved father's biliary cancer diagnoses is much to digest. I feel for you. 
A one week out appointment is better than the norm, hence I would stay with the current suggestion.  In the meantime I would make contact with USC, as well as they have a robust hepatobiliary department with high focus on cholangiocarcinoma. 
Please take a look at the below links referring to USC physicians:
http://cholangiocarcinoma.org/the-chola … ory-board/
http://cholangiocarcinoma.org/the-chola … ory-board/

Once the official diagnoses is confirmed, you would want to consult with a highly experienced biliary surgeon. 
Then, dear Beatriz, try to take deep breath and take it step by step.  The fantastic members of this site will accompany you, help you sort through and stand by your side, all the way.

Hugs,
Marion

Anne......you are wonderful at "running the wheel" and I couldn't agree with you more in searching out available treatment options for your husband. 
I found this on the MD Anderson site: https://www.mdanderson.org/education-an … index.html

Only recently I attended a FDA meeting in where Dr Rosenberg presented successful cases of adaptive t-cell transfer.  Among other diseases, he mentioned 2 cholangiocarcinoma patients, one being our Melinda.  The excitement for this treatment is well warranted and should be explored, but other options should be considered as well, because cancer immunotherapy is the newest form of cancer treatment with incredible promise for our cholangiocarcinoma patients.

1. Adoptive cellular immunotherapy also includes  T cells bearing chimeric antigen receptors (CARs)
2.  Immune checkpoint inhibitors such as Merck's PD-1 inhibitor: pembrolizumab (Keytruda) have been approved in the US and Europe for treatment of metastatic melanoma and may be prescribed off label as well.

Hugs to you,
Marion

Anne....welcome to our special group, we are happy you found us.  As mentioned by you, the NIH  sponsored Tumor Infiltrating Lymphocytes is restricted to US patients only, but I assume that within a short period of time, other countries will provide this experimental treatment as well.  It may be best to utilize the  information provided by the EU Clinical Trials Register.
https://www.clinicaltrialsregister.eu/

Anne, I noticed that Merck is running a clinical trial your husband may qualify for.  It also is a immonotherapy trial, but your husband's liver biopsy must have the PD-1 receptor.  I believe your husband has intrahepatic cholangiocarcinoma, am I correct?  Take a look:
http://www.merck.com/clinical-trials/st … try=Norway

You may make contact with:  Henning Hoyte center by using this number: 47 32 20 75 20

I hope this helped, dear Anne, please let us know.
Hugs
Marion

19

(10 replies, posted in Introductions!)

Daisy.....thanks for reporting back.  Good to hear that vomiting, nausea and pain are under control.   Opioids are very effective for treating and managing pain, but their use frequently results in opioid-induced constipation.  Rather than taking in 3 big meals a day, it has been suggested to spread the food intake throughout the day.  Small meals, 6 times per day.  Once your Mom gets stronger, she may need to walk a bit, not big walks, but small enough movements to stimulate her digestive tract. In more complicated cases, it has been advised to eat while standing up.  Our JeffG used to take a stool softener (up to three per day) and then reduce to two per day and he faired rather well. but  everyone responds differently. In any case, dear Daisy, I know that it will be worked out.
Although, 3 to 6 months may be a good time frame,  please remember that many people outlive these predictions. Excellent symptom control will allow for good quality of life and knowing your, Daisy, you will make sure for this to happen. 
You are in my thoughts.
Hugs,
Marion

20

(10 replies, posted in Introductions!)

Daisy.....the vomiting may be related to a biliary obstruction.  What type of tests are they taking?  I am concerned that the local hospital has little or no experience with this cancer. 
Hugs,
Marion

21

(6 replies, posted in General Discussion)

Cathie....convincing your sister of the need to consult with another physician will be the harder part, as she has formed a bond with her doctor.  It may very well turn out that the UC physicians agree with the current approach of her treatment, but you would want be sure of that.  Not only do major institutions conduct in-house clinical trials, but the volume of patients treated, lend to experience and knowledge otherwise not obtainable.
The below links provides information of 2 USC physicians "very" familiar with this cancer.
http://cholangiocarcinoma.org/the-chola … ory-board/
and this one:
http://cholangiocarcinoma.org/the-chola … ory-board/

Good luck, dear Cathie, and please stay in touch.

Hugs
Marion

Photodynamic Therapy With Polyhematoporphyrin for Malignant Biliary https://clinicaltrials.gov/show/NCT02504957

completed study data: http://ueg.sagepub.com/content/early/20 … 7.abstract

23

(6 replies, posted in General Discussion)

konniestwin..... we have reports of pain in left upper stomach spreading up to shoulder related to the Neulasta injection. If the physician doesn't can't confirm then you may want to look at their website www.neulasta.com, or call 1-844-696-3852 (1-844-MYNEULASTA).
https://www.neulasta.com/learn-about-ne … ZcSWZ.dpuf

No matter how much we like our physicians and how experienced he/she is, obtaining a second opinion has become standard of care.  If it were me, I would get in touch with USC.

Hugs,
Marion

konniestwin...clicking Colleen's s signature box (ctwong81) brings you to her profile with e-mail address.  Perhaps she will answer your question,
Hugs
Marion

Shelliec....you may also want to enter: radioembolization, also called  Y-90.

Hugs,
Marion