1

(4 replies, posted in Supportive, Palliative & Hospice Care)

huiyoungkim.....I don't get it.  Palliative care involves easing of symptoms, stent replacements fall into this category.  Perhaps your Mom's physician can work this out with hospice and you may want to reach to the organization leader to clarify.  Please let me know if I can be of any help to you.
Also, there are several hospice services available.  Check around and let me know how things go.

Hugs
Marion

2

(14 replies, posted in Introductions!)

Joe....your Mom is not receiving chemo at this time, correct?  If not so, then there really is nothing else to do, but to await her platelets reaching normal levels again.  Hang in there, this will pass. 
Hugs to your Mom and your entire family,
Marion

3

(1 replies, posted in Introductions!)

Carlene....welcome to our group.  As you may already know, gastric cancer patients, including those with cholangiocarcinoma, can have a tendency to develop Portal Vein Thrombosis.  You may want to enter the keyword into the "search" function, top bar, for previous discussions about this issue.

In regards to the CA 19-9, certain people lack a specific antigen, hence there is no elevation in the tumor markers.

As always I would love for other members to come forward and to share their experiences with us.

Hugs,
Marion
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4

(4 replies, posted in Supportive, Palliative & Hospice Care)

huiyoungkim....I too would like to welcome you to our site.  Regarding your question of possible intervention due to stent blockage, I think that unless your Mom feels otherwise, you should consider taking her to the hospital.  Stent replacements relieve symptoms only,  they don't cure the patient.  Are you concerned for hospice to respond negatively to the intervention?

Hugs
Marion

5

(2 replies, posted in Introductions!)

latenightalumnus...welcome to our group.  So sorry you had to join us, but given that we have this disease in common, we are thrilled to have you on this site.
First and foremost, please remember that your father does not have an expiration date stamped on his foot. 
I have a few questions:
Obtaining a second opinion from a center treating a high volume of CCA patients has become standard of care.  Is this something your Dad would consider doing?
You are mentioning recurring infections, are most related to blockage of the stent?
Had the diagnosis been confirmed by biopsy and if so, has the tissue been tested for molecular alterations (faults)?
Have you perused our "newly diagnosed" thread on the main website? http://cholangiocarcinoma.org/newly-dx/

Also, dear latenightalumnus, you may also want to take a look at the vietnam vet facebook site.
http://www.cholangiocarcinoma.org/punbb … p?id=13817
They are a nice group helping vet's with anything service related.

Hopefully I did not overwhelm you with my response, certainly it is not my intent to do so, rather I wish for you to be well informed about this cancer so that your father can make educated decisions.

Again, so happy you found us and I look forward to others chiming in as well.

Hugs
Marion

You are welcome, dear Gavin.  While speaking to specialist treating HIV patients, she mentioned that the immune system requires to be stimulated but also harnessed as well.  We yet  have much to learn and given the 900 plus immunotherapy studies currently underway, some of the data will give us clear answers. 
At ASCO 2016 I met with Merck physicians and researchers, who pointed out that immunotherapy trials will include combination with cytotoxic agents, radiation and immunotherapy, surgery and immunotherapy and much more.  Clearly, the answers are forthcoming. 
Hugs,
Marion

Julie....I so much can relate to your dismay. 
Twenty years prior to the diagnosis of cholangiocarcinoma my husband was treated for testicular cancer. It is believed that the radiation treatment focused on his abdomen caused the secondary cancer i.e. cholangiocarcinoma. 
While speaking with the oncologist I mentioned the fact that the radiation was way too broad as his testicular cancer had not invaded the lymph nodes, but yet the entire abdomen was radiated.  The specialist agreed with my comment and remarked that at that time, 20 years prior, the then treatment protocol included full radiation.  And, yes, it was unfortunate that my husband developed cholangiocarcinom, but he had twenty disease free years.
It makes sense, but sure did not help me accept the fact that had it not been for the radiation that perhaps my husband would be alive today. 

Hugs,
Marion

Julie....there are no guarantees, but there always are the options of opting in our out.  Already you are ahead in the CC game, no reason to believe that this other crazy, rare, disease can't be beat as well.

Thinking of you (lot's)

Hugs
Marion

There are still many unanswered questions about the roles of neutrophils, other immune cells, and other actors in the tumor microenvironment in both promoting and suppressing the growth or spread of tumors, Dr. Kaplan cautioned.

For example, although the finding that NETs might promote metastasis is “quite novel,” she continued, it’s consistent with findings from other studies that have implicated other compounds excreted by cells in the metastatic process, including long non-coding RNAs and small sacs called exosomes.

To complicate things further, Dr. Egeblad stressed, the available research strongly suggests that neutrophils or macrophages or other factors could aid tumor development in some situations and hinder it in others.

“It’s very likely that there is a fine balance” between when an immune cell fuels cancer development or inhibits it, she continued—a balance that is influenced by many different factors that researchers are just beginning to understand.

Read more:  https://www.cancer.gov/news-events/canc … =eb_govdel

Beautiful, dear Lainy.
Hugs
Marion

11

(14 replies, posted in Introductions!)

Joe.... not infrequently do situations such as this occur with chemotherapy treatments.  My sister in-law (different cancer) once mentioned that  blood infusions felt just like receiving a pep pill. 
There is a saying on this board, dear Joe, that this cancer is comparable to that of a roller coaster ride. Hold on tight and hang in there, we are rooting for you.

Hugs to you and your family,

Marion

Andrew....welcome to our group.  From what I have learned, the excruciating pain may very well be related to the spine metastases.  Have you consulted with a radiologist, who may be able to address this issue?

Several  major cancer centers also treat a high volume of cholangiocarcinoma patients. We provide a listing: http://cholangiocarcinoma.org/for-patie … r-centers/

You may also care to peruse our medical advisory board: http://cholangiocarcinoma.org/the-chola … ry-boards/
or you may choose a center close to your mother in-law's residence. 

When making contact with the individual center you will be informed as to which records are pertinent to collect.  In general they will need  everything pertaining to the diagnosis i.e.doctor's notes, scan and blood test results. 

Please know that patients are entitled to receiving all their medical records.  Your mother in-law can request or she can designate another person to request on her behalf.  The latter requires a signed document, which will be provided by the individual physician's office or by the hospital.

I hope for our members to chime in on this conversation and share thoughts with you as well. 

Again, glad you found us and please don't hesitate from asking any question coming to your mind.  We are in this together and we care.

Hugs
Marion

13

(19 replies, posted in In Remembrance)

Nancy,....My heart goes out to you and your family.  Knowing you the way I do and the enormous effort made to find answers to your Mom's cancer, you must be assured that everything that could have been investigated was done by you.

Hugs and love,
Marion

14

(61 replies, posted in Introductions!)

toewalker...thanks for responding.  My question is:  has the biopsied tissue been tested for molecular alterations?  In other words, has your DNA been tested?  Reason for my asking is the following: you may want to pursue a second line treatment in the future and for this you would want to know what targeted drug may be available in a clinical trial.

Hugs
Marion

15

(61 replies, posted in Introductions!)

towalker.....(love your screen name)  I too would like to welcome you to our site and like you to know that we are happy you found us. 
I wonder, has there been a biopsy, which has been analyzed for molecular alterations? 

Hugs
Marion

You may order booklet or download PDF: https://biospecimens.cancer.gov/global/ … re-508.pdf

17

(7 replies, posted in Introductions!)

Megan....please don't hesitate from asking questions.  This is the place to do so.
At one point "maximum benefit" will occur with your Mom's current treatment.  In either case, ineffective or maximum benefit, the molecular testing results of Foundation One's analyses will  will identify DNA alterations (faults) for which a targeted drug may be available or a clinical research study is conducted.  Or, perhaps some type of radiation treatment may be applicable.   In any case, you are ahead of the game and that is very good.

It is likely that UCSD is the place you ultimately choose,  but a second opinion is of enormous value.

The real value of this forum lays in the information passed on by patients and caregivers, hence I hope for others to chime in.

In the meantime, dear Megan, try to relax.  Your Mom has been diagnosed, she began treatment and much, much more has yet to be determined. 

Oh, and thanks for removing the links.  I too have to do this occasionally for my postings as well.


Hang in there,

Hugs,
Marion

18

(7 replies, posted in Introductions!)

Megan...no problem and it happens often that multiple postings appear.  Would you please be so kind us the below links and delete?
http://www.cholangiocarcinoma.org/punbb … p?id=15602

http://www.cholangiocarcinoma.org/punbb … p?id=15603

http://www.cholangiocarcinoma.org/punbb … p?id=15604

http://www.cholangiocarcinoma.org/punbb … p?id=15605

http://www.cholangiocarcinoma.org/punbb … p?id=15606

Don't worry if it is problematic to do, we always have Gavin has backup to handle these sort of things.

Thanks a million,
Hugs
Marion

19

(7 replies, posted in Introductions!)

Megan....welcome to our special group.  Moving your mother close to you is a wonderful idea and I am happy to see that she is amicable to doing so.
I hope for others to come forward and share their experience with UCSD. 
Additionally though, dear Megan, I would try to consult with a center treating a high volume of our patients and for Southern California that center  would be USC. 
Again, welcome, we are happy you found us and let's see what other advice will come your way.

Hugs,
Marion

Allison....is your the current physician affiliated with the Nova Scotia Cancer Center?

Kris...simply amazing.  I believe you are the first person to report complete tumor regression eliminating the need for a stent replacement.  Crossing my fingers that the reduced dosage will take care of the vision impairment. Was it coming on slowly or did it happen suddenly?
Hugs to you,
Marion

Oh, I forgot to mention that Gavin is able to delete your additional postings.  Feel free to delete yourself, but know that they may magically disappear as well.  In any case, if you don't get to it our Gavin will do it for you.

Hugs
Marion

Danielle.....I would like to follow Lainy and googily and welcome you to our group.   We are happy you found us.
You are ready to go (port installed) to begin with 1st line treatment of gem/cis.  Fingers are crossed for a great response with few or no side effects. 
I believe that all patients should line up 2nd line treatment as soon as possible, because at one point you will become resistant to 1st line.  And, this is where numerous options become available.  As googily mentioned, molecular testing always should be considered it does  however require a biopsy.
You should check with your insurance carrier and see whether you are covered for molecular testing.

You may also want to look into the NIH trial adaptive T-Cell trial.   
This is the trial:
https://clinicaltrials.gov/ct2/show/NCT01174121
Contact: Jessica G Yingling, R.N.    (866) 820-4505    ncisbirc@mail.nih.gov   
Contact: Steven A Rosenberg, M.D.    (301) 496-4164    sar@mail.nih.gov   

As Lainy mentioned, I too  would consider keeping the appointment with John Hopkins.  It's coming up soon and it is unlikely for any other major institution to see you at an earlier date.  Following the Hopkins consult, you can always make additional appointments with other large institutions treating a large volume of cholangiocarcinoma patients. 

In the meantime, good luck with your first infusion.  Know that you have a tidal wave of good wishes  heading your way.  Please keep us informed, we care and we are in this together.

Hugs
Marion

Barbara....what began as a little fundraiser then now turned into an exceptional event.  You are amazing.  Much of the success of bringing this cancer to the forefront is due to your endless commitment to the foundation.  Where would we be without you?
Hugs and love,
Marion

25

(14 replies, posted in Introductions!)

Joe...my heart is with  your and your family.  Does your mother have medical coverage?  If so, then you may want to discuss with the physician the option of biopsy testing  for molecular alterations.
Hang in there, we are rooting for you.
Hugs
Marion