Topic: Help - your advice needed

Hi forum,

I haven't posted here for a while, but I'd like to ask for your advice.

A short recap - my Dad (63 yo) was diagnosed with intrahepatic cholangiocarcinoma in early 2012.  He had resection on the one tumor in the liver, and did not do chemo afterwards.  The first recurrence (2 tumors, each ~1cm) was found in January 2013 and after biopsy confirmed recurrence, he underwent RFA treatment for the two tumors.  The procedure was successful, and he did not do chemo afterwards. 

Couple of weeks ago, he went in for his scans and the MRI found again two small tumors (~1cm each) on the liver, and a suspicious nodule on the lung.  The radiologists believe the liver tumors are recurrent, but that the lung is not related.  We are waiting to do a biopsy on the lung to identify what it is.

The situation right now is that we have the chance to do the RFA on the liver this week, without knowing what the lung nodule is (that biopsy is scheduled for weeks later). 

My question is - assuming the lung nodule is related to the liver (though we hope not), does it make sense to do RFA on the liver + follow up with chemo OR should we just wait to do systemic chemo?  I'd love to hear your experience and thoughts on this. 

Thanks very much.
Julie

Re: Help - your advice needed

Hi,
If I were you ,I will do RFA on the liver and for the lungs too.
The lymph nodes and the lungs are the mets of CCA to go first.( lymph nodes are local regional mets  and the lungs are  distance mets ).
God bless,

Please know that my personal opinion is not intended nor implied to be a substitute for professional medical advice. If  provided, information are for educational purposes.Consult doctor is a MUST for changing of treatment plans.

Re: Help - your advice needed

Thanks Percy, your advice is always appreciated, I was secretly hoping you'd respond to the post!

Just to tap your knowledge a bit further - can you share your understanding of the effectiveness of RFA if the disease has spread? 

The oncologist my Dad has been seeing at UCLA says there is no role for RFA when the disease has spread beyond the liver. 

Thank you!

Re: Help - your advice needed

jz....we are seeing a big shift re: the use of various types of radiation when addressing metastases of this disease.  If your present physician disagrees then I would reach out to someone else. 
Good luck and please keep us posted.
Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

5 (edited by PCL1029 Mon, 25 Nov 2013 19:25:37)

Re: Help - your advice needed

Hi, Jz,

Thanks for your compliment.
As you know, there are our moderators ,nurses,cytologist,and sometimes doctors  and other medical professionals will response to our members discussion board message and I am only part of the team.

Interventional radiologists(IR) and the medical articles that I read mostly agree that  for intrahepatic tumors ,if the  LOCATION of the tumor is not a problem, the SIZE of each tumor is <3cm and/or no more than 3-4 tumor IN NUMBERS;    chemoembolization followed by RFA or microwave ablation or IRE will have the same effectiveness of resection.
For lymph nodes nearby the liver ,depends on the location and size, cryoablation or IRE can be of use to ablate the tumor without using HEAT.
BTW,I am actually testing out  the above procedures for my third recurrence.
and I will let the members know exactly what I think the result is actually match what the books and experience said or not.

For lungs, RFA,IRE or microwave ablation can be used to burn off the leison ; follow up with  adjuvant chemotherapy or targeted therapy and with PET scan every 3 months for confirmation of the effectiveness of the IR treatment.
Stanford is one of the best IR for 2nd opinion in the west. and I see why not to give them a try for a 2nd opinion.
Your dad is 63,the same age as me,unless he had other  co-exist diseases at the same time that will affect his overall risk of having IR treatment. I do not see any problem for IR procedures;

Most of the IR  procedures are outpatient procedure and can go home the same day. The only problem IR procedures are palliative in nature and not for cure.( but I have 2 successful resections and still have  3 recurrence,so resection is ONLY a POSSIBLE cure ; the recurrence rate for ICCA is 50-80%)

If  they(Standford) offer your father   radioembolization ;  and If I were your father, I will only choose it as my last  IR option.

God bless.

Please know that my personal opinion is not intended nor implied to be a substitute for professional medical advice. If  provided, information are for educational purposes.Consult doctor is a MUST for changing of treatment plans.

Re: Help - your advice needed

Wondering why you choose radioembolization as your LAST option?

just curious...since my husband just did this.

Re: Help - your advice needed

Hi,
It is the experiences and outcome  of our past members who go thru radioembo  as well as the medical journal articles that I read over the last couple years.

It is  my choice  based on the knowledge  I learn so far and it does not mean radioembo not work either.,but it is not for everyone .

God bless.

Please know that my personal opinion is not intended nor implied to be a substitute for professional medical advice. If  provided, information are for educational purposes.Consult doctor is a MUST for changing of treatment plans.

Re: Help - your advice needed

So I'm even more curious--have people here only had BAD
outcomes/experiences with radioembolization?

have there been no good outcomes?

yikes...i wish people would have chimed in when i asked
for personal experiences BEFORE kyle had this procedure.

i guess we will continue to hope that we are a GOOD
outcome and will have a good story for board members
to hear then. smile

here's hoping!

Re: Help - your advice needed

Hi,
I know at least Jason,Pamela and Holly have given their opinions and experiences to you based on the messages you had with them on this board.
I think they have given you the best  of their  experiences and knowledge .
I know Jason wrote to you  in one of the message that about what he thinks about the radioembo but  he also mentioned" it is not the time for his wife for having this procedure." He did not say it  without studying and asking questions. I know he did a lot of researching on this and you can do the same by reading the past members' experiences,case by case, on this board,under section of Radiation Treatment.
God bless.

Please know that my personal opinion is not intended nor implied to be a substitute for professional medical advice. If  provided, information are for educational purposes.Consult doctor is a MUST for changing of treatment plans.

Re: Help - your advice needed

The Radioembo, is that also what is referred to as y90?
Porter

Hope, love, strength...2013 and for the years to come, Porter.

Re: Help - your advice needed

Hi, Porter,

Yes Y-90 is the same as radioembo . the same as SIRT .
Y-90 come in with  two mediums (as resins or glass particles) but the delivery method is the same. The effectiveness are basically the same .

God bless.

Please know that my personal opinion is not intended nor implied to be a substitute for professional medical advice. If  provided, information are for educational purposes.Consult doctor is a MUST for changing of treatment plans.

Re: Help - your advice needed

Thanks Percy.

Hope, love, strength...2013 and for the years to come, Porter.

Re: Help - your advice needed

I have to say that we DID do a lot of research on Y 90 and I have
to say that I asked for people's advice, help and personal stories
(of which we got the 2 or 3 you mentioned.)

Here, on this board.  TWICE.

I should probably leave well enough alone but OUR HUGE
frustration with this board is that we come here seeking
advice and help and opinions from people who are going through
this...

almost each and every time I post a question, hardly anyone
answers (which of course is not very helpful)

when we ask for "real life stories", almost no one ever answers.

We are almost always pointed in the direction of hard to understand
and complicated medical journals which are not helpful to "lay people"
like us.  I'm sorry that we're not as smart as some of you here on
this board.

Which is why we come looking for practical help--real answers
from real people fighting this cancer.  And mostly I feel we
get a lot of fluff and silence.  (After speaking with 4 doctors FIRST)

I truly and sincerely wish that more people, REAL PEOPLE, would
pipe in with advice, personal stories and helpful answers of
WHAT THEY EXPERIENCED.

I feel extremely frustrated that IF Y 90 is a "last resort" and
has almost all "bad outcomes" that when I asked weeks and weeks
ago, SOME ONE WOULD HAVE BEEN KIND ENOUGH OR BOLD
ENOUGH TO ANSWER MY QUESTION HONESTLY.

We come here making (LITERALLY) life and death decisions
for people we love, looking for help--and (I personally) don't
feel like I find very many answers here.

Sorry for the vent...feeling VERY (!!) frustrated that we have now
done a "bad thing, last resort thing with almost all bad
results" on my husband....

And the one place where I could have found some real life
HELP---and no one felt obligated or like helping us BEFORE hand
when we were BEGGING for some good answers to help
make this decision.

sad

14 (edited by marions Tue, 26 Nov 2013 15:49:44)

Re: Help - your advice needed

Dorien…….I feel you pain, agony and frustration and appreciate the forthrightness of your comments however; I don’t agree with the fact that you may have made a “bad” decision.  The underlying clinical issues of Kyle’s disease set the tone for treatments which is primarily based on the implementation of evidence-based interventions.  I for one am expecting the positive results to coincide with the expectations set forth with this treatment.

We must remember that “rare diseases” lack the necessary funding and research opportunities granted to larger population based illnesses.  The current shift of patient organization involvement with the NIH, FDA, NCI will lead to acceleration of research however; we are caught in this developing wave of new approaches with outcomes not yet determined.

And, that dear Dorien, is it in the nutshell.   We have to continue to search for answers, evaluate and decipher those treatments available for our loved ones and then move forward with our decisions in order to not be defeated, but rather to benefit from positive responses.  In a far reached sense this relates to personalized treatment applicable for our patients at present. It is not until the molecular behavior and the underlying genetic components of this cancer are clinically validated that treatment options may change.  At present and in the foreseeable future we must rely on the knowledge gathered, present to the treating physician and agree to a treatment plan available to us

Blogs such as ours provide a venue for those wanting to share thoughts and ideas and personal experiences as well.  I can’t emphasize enough that we (the foundation) do not set the terms of involvement rather; we encourage the interactions amongst all members in the best way possible.  Some prefer to share personal experiences - some do not.  Some look for answers scientifically based whereas others prefer to read easy to understand comments.  Many simply don’t fully grasp the complexity of this disease or, for various reasons are hesitant to comment or to make suggestions.  It is for that reason that the moderators encourage people to peruse the older postings provided on this site. 

Treatments are based on disease presentation.  Possible Radiation treatments are determined by the tumor burden and based on these findings allow for possible intervention.  Patients and caregivers can be actively involved by gaining knowledge and understanding ranging from basic to more advanced ultimately though; it is up to physician to implement the treatments.   

Stage IV disease presents with enormous challenges, but we have learned and continue to witness slowing of disease progression and there is no reason to believe for Kyle not to be equally as fortunate.  Other options may then become available.

You hang in there, Dorien.  Tons of love and support is heading your way.

Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Help - your advice needed

I cannot come on the discussion boards every day - it is very hard as things worsen rapidly for me. But I am one of those very "real-world" people who has done y-90 and have written here extensively about my experience, which was good. In fact I am considering doing it again (you can only go twice, total) because it bought me 6 months of wonderful life. Please do not be angry. We are all doing the very best we can with an extremely difficult disease that has no real protocols for treatment and every case seems so different. If you want to message me privately about y-90 or if there are just questions I did not answer for you, please write again. But don't be cross. It is hard enough to die of this thing, as many of us are, while we try to still search for answers, help, and solace, without letting a lot of negative energies onto these lovely discussion boards.   Holly

Re: Help - your advice needed

Thank you, Holly.  I was not able to express thoughts as well as you are able to do.
Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Help - your advice needed

Hi Holly, just checking as I did answer your last email but not sure you got it, it was weird!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Help - your advice needed

Dear Dorien,
I thought sharing my sisters y-90 experience was "real life" and helpful. My friend Martha's experience was also not bad. Though not a cure,  Y-90 is not a last ditch treatment but is one of many treatments for liver tumors. My sister went through y-90 with no complications beyond some pain that got bad around the 2-3 week point. The treatment did help those tumors targeted... Just doesn't stop microscopic seed cells that were metastasizing. My sister is still here, almost a year from the Y-90 (15 months from diagnosis) and with no serious complications from the CC amazingly. She is still on palliative chemo to buy time (3rd kind) and her disease is still slowly progressing which is super scary. The unknowns can drive you crazy so we try to focus on one day at a time. There's a book written by the wife of a CC survivor called "Every 15 minutes" and advises to focus and deal with life in small increments to keep from being overwhelmed and paralyzed with fear and grief. Because you have a family and husband to care for, I hope you're seeking help for yourself. My other advice is to simplify home life as much as possible... This is what I'm doing... A LOT less than I used to. My kids had to cut back on activities too because we just can't do it all and it makes for a calmer household.
I'm so sorry your husband is having a bad experience. You're not alone.
Willow

Willow

Re: Help - your advice needed

Dear Holly and Willow, I want to thank you both for putting your posts into perspective and being able to say what I could not find words for. There is NO other site like CC.Org. The other morning I woke up to a post from India and one from Lebanon both at the same time. The reason I get excited as it shows we are reaching around the world and the more we touch the quicker we are noticed and the faster research will work for us. All of this from a small group of volunteers and a Board of loving people trying their best to help each other. Bless each and every one of you.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Help - your advice needed

Dorien,

I gave you the most honest answer I could. Y-90 was not a last resort for Lauren. As I said before, it did help her and killed all her tumors. Everyone on this board tries to help everyone as best they can. I, for one, cannot spend 24/7 on here. It is difficult enough for me to come on here and try to give people comfort. We all volunteer our time here. Everyone else is in the same boat and scared. You said you wanted to hear from some "real people". I'm as real as it gets. I could have left this group after my daughter died, but I wanted to stick around and help others by sharing our experiences. I hope you were just in a bad mood the day you wrote your post, because if you really feel the way you say about this board, it deeply hurts my feelings. You will never find a more kind and compassionate group. Cancer sucks. I know it. You know it. I am sorry you are having such a difficult time. My heart goes out to you, Kyle, and your family.

-Pam

My beautiful daughter, Lauren Patrice, will live on in my heart forever.

My comments, suggestions, and opinions are based on my experience as a caretaker for my daughter, Lauren and from reading anything I can get my hands on about Cholangiocarcinoma. Please consult a physician for professional guidance.

Re: Help - your advice needed

I struggle to even get into this mix but, for many personal reasons, I feel I must respond.

First, I want to say thank you to all those who try to add their input to benefit others. The moderators are truly caring people who clearly would do anything in their power to help. And it's not just the moderators. It's so many people who have "been there" and want to try to help others.

Second, I feel Dorian's pain. It is challenging to find answers - or even a path forward - by using this forum. Yet there is a mountain of information and a plethora of experiences. The hard part is digging through all of it to find what is truly relevant to a particular patient/caregiver.

This forum is useful, but it has become the primary vehicle with which to seek answers. And that is not the structure nor design of a blog (i.e. this forum). Where else do you peruse through hundreds, if not thousands, of personal messages to find an actual answer to your questions? It's not the people, it's the tool that causes frustration.

I know the foundation is working on an improved website and I eagerly await the revision. I also understand that, in some cases - myself included - we are searching for immediate solutions. This foundation, and this website, has become the standard "go to" site for guidance by Cholangiocarcinoma patients and caregivers around the world. That is a huge challenge - keeping ahead of the information associated with CC, and then providing it to everyone in a consistent manner.

There are no easy answers, but I will still come to this forum in the short term to look - even if that doesn't happen daily. I know I will miss out on possibly key information on those days where I cannot log in - and I wish there was a better way.

I also know I truly admire and respect every person who is willing to come here to post their personal information so it may benefit others.

Carl

Re: Help - your advice needed

My advice for anyone on this site is to be fairly specific in the topic if it's a new post. For example, when discussing the clinical trial, I usually put the drug number. Or if I wanted side effects from gem/Ox that was the topic. It helps when using the search function.
While no website is perfect, I, too, await the changes. I'm not sure how it will affect how we do "business" here. Hopefully it makes searching easier.
I try hard to answer posts where I feel my experiences as a patient are relevant. However, I have not had many of the newer, less tested treatments, so all I can do is empathize with people over nerves, etc. I, also, find it difficult almost all the time to read some of these posts. But I want to help.

KrisJ
"Don't just have minutes in the day; have moments in time."
Any opinions I give are based on personal experiences, and are not based on medical knowledge. I strongly suggest receiving medical care and opinions.

Re: Help - your advice needed

Dorian,

You have committed to a treatment protocol and are feeling regret because you feel like you didn't get all of the information from people on this site to make a decision.  I understand your frustration since these are life and death situations we are dealing with here. Keeping that in mind, I personally only post information to posts that appear close to my own experiences.

I know it's easy to lay blame elsewhere when we are feeling loss of control over our personal situations. It is natural to be angry and direct that somewhere, so don't feel badly.

The people on this site (moderators and others) are really here only to help out of the goodness of their hearts. The sharing of experiences is the power if this site.  Searching through older posts or being directed to them is sometimes the most helpful answer to questions.

We try hard here and I know you are trying hard too.

Hugs
Randi

Survivor of cholangiocarcinoma (2009), thyroid cancer (1999), and breast cancer (1994).

My comments, suggestions, and opinions are based only on my personal experience as a cancer survivor. Please consult a physician for professional guidance.

24 (edited by marions Wed, 04 Dec 2013 06:16:32)

Re: Help - your advice needed

What started with a very small group of people (I believe we were less than 15 in all) has grown to be the most sought after discussion forum for those touched by this cancer. The success of this board is directly related to the kindness, caring and compassion of those contributing to this site.  This community has created an invaluable resource, shares experiences and offers support for those seeking answers to this disease.
 
Our moderators are not monetarily rewarded rather their commitment to all is based on true selflessness. 

Pam lost her young daughter to this disease. We are devastated and still are reeling from the shock of it all.  Although, she is the one in need of support, it is our Pam that has helped us, the members of this site to heal and move forward.  While her heart is broken in millions of pieces, she continues to offer support and encouragement to others.   

While fighting for his own survival, Percy continues to search for answers by attending conferences and symposiums, serving as FDA patient advocate, donating numerous hours to research and treatment options; providing support to the foundation and members of this site.   He has undergone three resections and numerous, other treatments causing fatigue and tiredness and yet he continues to be there for us all.

Kris has undergone numerous treatments and has dealt with serious side effects.  When speaking of a Cholangiocarcinoma roller coaster ride, our Kris has experienced it all. Personally, Kris has survived the ups and downs of this cancer and yet our  Kris continues to be there for others.

Randi has conquered three cancers including Cholangiocarcinoma.  Rather than turning away from cancer, she has chosen to volunteer her precious time to help others on this site. Additionally, Randi finds time to participate in APOS phone conferences in order to obtain knowledge beneficial to us all.

Lainy has lost Teddy to this cancer, is in treatment for debilitating UC and yet she continues to check in with this discussion board all through her waking hours. She is always here to lend an ear and to give advice and continuous to humor us through it all.

Gavin lost his Dad to this cancer several years ago.  He has virtually no help in tending to his ailing mother and yet he devotes much of his life to this foundation. He supplies us with most of the new developments pertaining to this disease and has been especially helpful to those patients and caregivers living in the UK.  His contributions to the Cholangiocarcinoma Facebook Page encompass the majority of entries.   

We are mainly a volunteer organization.  Thousands of hours have been donated to creation of this site and thousands more hours are needed in order to sustain the growth of this foundation.   The work behind the scene is endless – we work with limited resources; we lack manpower.  Donations to the foundation are carefully selected for specific research projects leaving very little for occurring expenses.  Most of us have not only donated our time, but in order to grow we also have contributed financially to this foundation.   At times we are overwhelmed, continuously understaffed, but we don’t waver from our goal by providing the best service possible to the Cholangiocarcinoma Patient Community at large.

Do we want to improve on this site – absolutely, we do.  Though we love to please everyone, we simply are not always able to do so.  Can we answer all questions – not likely. But, together we have built the platform for success. 

We deserve a hug.  So, here we go.
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Help - your advice needed

And here is to you, Marion. NONE of us have a clue what all you do for CC. You are the energizer bunny and you go well in to midnight every day trying so hard to help find that missing link, finding the best ONCS and Surgeons and oh so many things I cannot even begin to write them all down. Since Bruce passed you literally spend every waking minute eating and breathing CC.Org. And like everyone else you have your own family situations going on at the same time. Some times I picture your head as a file cabinet and you pulling file folders from it all day long! This seems too simple to post about you, I could go on and on but it would blow up our Site!  We love you!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.