Discuss with your physician.  Perhaps radiation treatment can eliminate or reduce bone pain leading to possible reduction of pain medication.



Retreatment of Metastases and More

In addition to primary treatment, the guideline also addresses retreatment of bone metastases. It recommends that reirradiation should be considered if patients experience recurrent or persistent pain more than a month following external-beam radiation therapy (EBRT) to treat peripheral bone metastases or spinal lesions. Research demonstrates moderate effectiveness for reirradiation; a 2014 systematic review and meta-analysis found an overall pain response rate of 58%.

Read more about ASCO's New Guidelines for Radiation Therapy
http://www.ascopost.com/News/48372?utm_ … rm=6347697

Thanks you so much, dear Lainy.  You have been on this board as long as I have and are acutely aware of the most welcome changes encountered. We so much appreciate each and everyone actively joining in and sharing information with the global patient community.  Thank you.

On a personal note, not quite sure how I will deal with being off the grid for 8 whole days. This is a first time for me in 11 years.  I know that you, Lainy, have similar feelings on those rare occasions that you can't connect via this discussion board. 

Hugs and love,
Marion

Dear all,

I will try to connect to this board, but please accept my apologies for not responding to personal and immediate request within a  given time frame.

Again, I may have the opportunity to peruse the information posted, but I am fully confident that things will continue move along.

Hugs to all,
Marion

https://content.govdelivery.com/account … ns/1876f9f

All drugs have side effects, including immunotherapy drugs, virtually all can be dealt with.

See more:

http://www.cancer.net/navigating-cancer … de+effects

http://www.cancer.net/blog/2017-02/immu … linkid=cca

In this link you find patient friendly answers to the various types of Immunotherapy, how it works and which cancers benefitted the most.  Think: many mutations.

I recommend first scrolling down to the second video presentation titled:  Immunotherapy, an Introduction.

Have fun and please don't hesitate from opening a discussion re: questions you may have.

Hugs
Marion

Sarah E. Hoffe, MD, of the Moffitt Cancer Center, discusses the controversial role of radiation in the treatment of pancreatic cancer, (much of this carries over to our cancer as well) recent advances in delivering short courses of high-dose stereotactic body radiation therapy, and how best to integrate this new modality in borderline and locally advanced disease.

http://www.ascopost.com/videos/2017-gas … rm=6337188

Enjoy
Hugs
Marion

Even though you have the disease, you get to decide how you want to live the rest of your life. You can choose to live with hope.

Here are tips
on managing your daily life, incorporating fun, humor, and physical activities.

What spirituality means to you, how cancer may affect and change your spirituality and values, and finding comfort and meaning.

Information and guidance on going back to work, including talking with and relating to others at work, your legal rights, and handling problems at work.

Follow this link for guided information:
https://www.cancer.gov/about-cancer/coping/day-to-day

Billy....new data was presented but none from the Milan study.  Billy, have you reached out to the PI of that particular study?

Hugs
Marion

10

(4 replies, posted in Introductions!)

Summer....hello and welcome to our special group.  Already you have taken important steps by searching out a second, professional opinion.  It appears that a biliary stent cannot reduce the bilirubin, but you will notice immediate results with the biliary drain.

Response to chemo is very individual and yes, many are here to talk about their experience with Klatskin tumor and perhaps peritoneal nodules as well.

  Yes, I believe the correct decision has been made so far.
Once bilirubin is reduced to "2"  your Mom will be ready to receive chemotherapy. 

Hugs,
Marion

Catherine.... my heart and thoughts are with you in this difficult and precious time.  We will miss you.

Hugs
Marion

12

(58 replies, posted in Introductions!)

Joe....my heart goes out to you.  I have learned that brain metastases-derived from this cancer are very rare and only few cases have been reported. 

The FOLFOX regimen is comprised of

FOL – folinic acid  (leucovorin)  which is not a chemo drug

F – fluorouracil  (also known as 5FU)

OX – oxaliplatin 

Is it possible to consult with another specialist?

Hugs
Marion

Ha, ha, Kris.  I am sure he responded with a great smile.

Regarding the 2017 CCF video release:  we need to be patient.  I was told that quite a bit of work is involved with transferring the recordings to Youtube.  Expect it in one week from now.  (I hope.)

Hugs
Marion

Kris.. ..I am thrilled beyond words and yet can't believe seven years have gone by.  Now, here is a lady never taking off her boxing gloves. 

Hugs
Marion

Beatriz....thanks so  much for bringing this to our attention.  The DART trial is an extension of the MATCH research study,  which is comprised of 75% other cancers, but (and this is the exciting part)   25 % rare cancer patients are eligible to enroll as well. Based on this the DART trial evolved, including numerous other rare cancers.  Now, we are talking rare cancers only.  Hurray....

I had added this trial to the existing  MATCH thread, but was not able to locate the clinicaltrials.gov identifier. 
http://www.cholangiocarcinoma.org/punbb … 33#p108033

Thanks to you we no have the identifier.

I hope for those looking to enroll or are participating in the DART trail to share their experience with us. 

Hugs
Marion

Pfizer offers reimbursements to clinical trial participants, however the study must be conducted by Pfizer and not  medical institution where the majority of trials are conducted:
http://www.pfizer.com/research/research … rticipants

Speak up and make sure to be heard.
Remember, without you, the participant, the study could not move forward.  You have the ability to address cost reimbursement with the PI (principal investigator).  It may not always work, but it's worth the try.  Calculate the cost i.e. transportation, lodging, food, etc. and see what can be covered by the participating institution

More power to you.

Hugs
Marion

Great...thanks much

18

(1 replies, posted in Clinical Trials)

mich....this is the trial: https://clinicaltrials.gov/ct2/show/NCT02393248
The main goal of these studies is to establish the recommended dose and/or schedule of  INCB054828,  an oral drug inhibiting the fibroblast growth factor receptor (FGFR) types 1, 2, and 3.
This study will have three parts, dose escalation (Part 1), dose expansion (Part 2) and combination therapy (Part 3).

Have you been tested for the FGFR2 mutation?

Hugs
Marion

Arghh....links for websites disappear so quickly.

Does this link work?
http://www.cancer.net/research-and-advo … ientaccess

Hugs,
Marion

20

(9 replies, posted in Chemotherapy)

Hello, dear, summer and welcome to our group.

Patients and caregivers are most appreciated members on this site.  Hence, I hope for someone with real life experience to answer your question.

In the meantime though, you may want to look at a posting  from our oncology nurse (KarenD)
http://www.cholangiocarcinoma.org/punbb … p?id=15779

Glad you found us, we are here to help and we are in this together.

Hugs
Marion

21

(8 replies, posted in Chemotherapy)

You are welcome, dear positivity.

Immune checkpoint inhibitors can cause side effects.  Report all symptoms to your healthcare team.

1.  Patients will be monitored for Immune-Medicated Rash.  Severe rash (including rare cases of fatal toxic epidermal necrolysis) occurred in the clinical program of Opdivo.

Symptoms are:
Rash
Itchiness of the skin
Skin blisters
Ulcers in mouth or other mucus membranes

2.  Immune-Medicated Encephalitis can occur with Opdivo treatment

Symptoms are:
Headache
Fever
Tiredness or weakness
Confusion
Memory problems
Sleepiness
Hallucinations
Seizures
Stiff neck

Reference:   Immune-Mediated Adverse Reactions Management Guide

Bristol-Mayers Squibb

And, here she goes again.  Lisa was featured on a local Oregon News Station and is looking forward to to a New York fashion show:
http://wspa.com/2017/02/08/mom-goes-fro … hion-week/

You go, Lisa

Hugs
Marion

that uses infrared light to activate rapid and selective killing of cancer cells, also called  near-infrared photoimmunotherapy (NIR-PIT)

An early-phase clinical trial of NIR-PIT is already underway in people with recurrent head and neck cancers, which overexpress the epidermal growth factor receptor EGFR1.

Near-infrared photoimmunotherapy uses an antibody–photoabsorber conjugate that binds to cancer cells. When near-infrared light is applied, the cells swell and then burst, causing the cancer cell to die. Photoimmunotherapy is in clinical trials in patients with inoperable tumors.

This link explains more and allows you to watch a short video:
https://www.cancer.gov/news-events/canc … apy-cancer

Hugs
Marion

25

(2 replies, posted in Introductions!)

Will...welcome to our special group.

The protocol for liver transplantations is very restrictive, hence the majority of people don't fit the inclusion criteria. Having said that many are responding favorably to the current treatment options.  How are you fairing with the treatment and what does it consist of?

Have you had a biopsy and has your tumor tissue been tested for molecular alterations?

Hugs,
Marion