Topic: Communication issues

My 74 year old mother has been diagnosed with CC.  I'm going to try to give as many of the specifics as I know, but I'm frankly not clear on a lot of the facts.  I do know that the doctors (Vanderbilt) have said that they cannot take out the tumor that is around her bile duct.  It has also apparently attached to a nearby artery.  We have also confirmed this week that the lymph nodes (I'm not sure specifically which ones) are also affected by the cancer. 

Symptoms - mom is still pretty jaundiced, despite a stent being inserted into her bile duct that we are told is working.  Last I heard on her bilirubin count, it was around 7 (that was a week ago).  She is bloated, feels nauseated often, really hasn't eaten much over the course of the past month.  She has continued to get weaker and weaker, to the point where she cannot walk across the room without assistance.  Because of her weakness, the doctors have said they will not attempt any chemo treatments, which is the only course of action that they believe is possible at this point. 

She also had her kidneys stop working a couple weeks ago.  This was caused by a blockage of some sort around her bladder area.  No one has confirmed what really caused the blockage - I suspect that it was from her liver being enlarged from before they got a stent in her bile duct that was effective.  My father is convinced that it is a tumor (maybe a 2nd one??), but I don't think that any of the doctors have told him this definitively.  Ultimately they relieved the kidney issue with stents directly into her kidneys (both of them) from her back.  So her kidneys are currently draining through those tubes and not through her bladder. 

She is currently in a rehab facility trying to work on getting her strength back up in order to be able to get the chemo treatments.  But it just seems that this is a place for her to be "out of sight" from the doctors at Vandy.  Getting information from them has been difficult - no one seems to give us the complete story.  We try to call the oncologist, leave messages, and get no response.  I would like to get my father to seek out other opinions, but I feel like we really haven't received a complete FIRST opinion.  Meanwhile, my mother seems to be more and more discouraged and resigning herself to the fact that there is nothing that can be done. 

Mom started noticing something was wrong maybe 10 weeks ago.  Was diagnosed between 4-6 weeks ago.  And has been to sick to be at home for the past 3 weeks.  This has been a very fast change, particularly for someone who has never been sick in her life until 10 weeks ago.  I think the speed and magnitude of the changes for her have added to the discouragement. 

I live in Cleveland, so I'm not able to be there much to help my dad be more aggressive with reaching the Vandy doctors and having them communicate with us effectively when we do reach them.  I have tracked down the name and number of the doctor here in Cleveland that specializes in CC.  I would love to try to get this doctor involved somehow and have another opinion on a plan forward.  However, I'm not sure that either of my parents are really interested in a 2nd opinion.  They seem resigned to the fact that there is nothing that can be done from where we are at the moment anyway.  I would love to hear anything that anyone can add that could maybe give them some hope that there are other options and that we should be seeking out much more information that we currently have. 

Thanks, in advance, for any insights or encouragement you can provide.

Re: Communication issues

So sorry to be hearing about your Mom and her battle with this cancer. 
Possibly, you can explain to your parents that more opinions are mandatory when dealing with this cancer as it is still considered to be rare in comparison to other diseases, and that treatment protocols vary from patient to patient. Definitely, this cancer warrants you to be pro-active.  Possibly, other members can forward names of physicians located in your area who have treated CC patients in the past although, I believe for the Cleveland clinic to be a good place to start. 
Collecting all medical records including, scans, doctor

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Re: Communication issues

Hi DCP....I don't know what the possibility is for your Mom to come to Cleveland for treatment, but I'm in Cleveland and my brother has been diagnosed with CC so I can share with you our experiences.  First he went to the Cleveland Clinic but weren't thrilled with them, although the doctor was very experienced with CC.  He just wasn't very aggressive in his treatment suggestions.  We moved to Dr Christopher Siegel at University Hospitals and really liked him and his staff. 

The staff was very proactive about getting test results and taking a full look at my brother's situation.  In the end, he was a candidate for surgery and came through very well and is headed for some chemo radiation to hopefully finish the bad cells off...we were so glad that we took the extra step to get a second opinion.  I would highly recommend Dr Siegel and his staff.  Top notch and communicated extremely well with us.

Candy

Re: Communication issues

Thank you both for your suggestions.  We have had some moderate success in convincing my parents that a second opinion would be a good idea.  However, the one hospital we have talked to so far has wanted to see her, and it really isn't feasible for her to be much outside the Nashville area in her present condition.   

I appreciate your help and concern.  This website is a great service for anyone dealing with these issues.

Re: Communication issues

It was our experience that the oncology world just doesnt know that much about CC.  It is rare, so there is no money in it, and most clinical trials are combined with other cancers, and the treatments for cc are primarily those used for pancreatic cancer. So you just dont get alot of attention when you say cc. What can they say? All forms and combinations of chemo are statistically not helpful, and when I did extensive research and questioned the oncologist on this, he stated there just wasnt anything else. My husband chose not to take anything, and we had a summer of good travel and fun before the disease caught up with us. He thought it was better than just being sick for no reason.

6 (edited by JeffG Sun, 13 Apr 2008 08:10:13)

Re: Communication issues

Hi Robynhar.... I'm sorry that you feel chemo and the Oncology world has nothing to offer. That is your opinion that you are entiled too. I just can't believe your doctor says he had nothing more to offer.  These other chemos for other types of cancers have shown very good results and are still in the pioneer stage.  My opinion is that Oncology and surgeons have been making quite an impact in dealing with CC.  I have no doubt in my mind that I would not be on this earth as today if it weren't for great professional surgeons and super oncologists.  I have not been given no false promises and believe my life has surely been extended due to the persistance of my self and the willingness of my oncologist to at least try different types of chemo of which I have seen with my own eyes.  Maybe I won't live a full life but I've enjoyed the last nine years.  There are new innovative techniques and drugs being discovered and fine tuned each and every day.  Statistics are always behind times. The only current statistics is the number of people that are born or die and then that is only accurate if it was reported.  I look forward to living and loving those dear to me and if it means trying something different or new then so be it. Some 0ne told me once," That the Lord will help those who are willing to help themselves" I guess I and alot of others are willing to do that.  Another more non -bibical saying "no pain no gain".  As long as I continue to see with my own eyes my own scans and my own blood work, and my own face in the mirror, and hear myself snoring awakening myself, I will press on with my path of trying chemo or radiation or some new invention that kills cancer cells. That is what I prefer to do. I may not have any bone marrow left in my body when I'm finished or maybe I will.  It was certainly an individual choice of howyour husband chose to deal with this CC, but I personally want to give it a whirl and keep searching for something that will fight this disease where does it go from there if some one doesn't?  I ask my self, how would we be able to see at night without light or go on vacations using modern technology if some one didn't trial and error. I guess we all have opinions and choose different paths. This post is just my opinion.  Everyone has one and that again is something I respect as well.  I am happy that you had a great summer vacation and spent quality time togeter. I wish you the best. I'm am truley soory to hear of your bad experience with hospice as well. My true sympathy goes out to you for your loss as well, but I really have to say, many others on this site are really choosing to be positive and battle this disease to extend life or possibally hit a cure. We have hope. You made some points about money and research that were understood.  That's why we have Organizations such as Cholangiocarcinoma.Org rising to the challenge to intensify public and political awareness and working on obtaining research grants and raising funds where possible.  They are making a huge difference although a lot of us don't see what is going on behind this web site.  Their and our work will benefit maybe one of us or at least get a head start for the future. I apologize if I have over spoken but I personally have hope and want to try if not for myself for others as well.  Together we can change those outdated statistics.  I think we have a real head start in this arena already. 

God Bless,
Jeff G.

Take it to the Limit,One More Time! (Eagles)

Re: Communication issues

dittoes, Jeff. 

I'm only 45, and I'm choosing to do whatever it takes to fight this.  I want to live to see my children grow into adults.  I want to see my future grandchildren.

Re: Communication issues

Jeff, your wisdom is one of the reasons you are my hero!

Re: Communication issues

You guys are great and courageous in your fight, but I just want to chime in on behalf of Robynhar -- I think there ARE cases where chemo is just a waste of time and takes away from quality of life, the question always is: Which cases? It's so hard to make the decision, and many people are grateful they tried chemo and got good results, many people are grateful they didn't go through chemo and had a relatively pain-free existence.

Jeff G is a great example of someone who has responded wonderfully to chemo, but unfortunately that isn't always the case.  I'm glad he keeps on truckin' and he's an inspiration to all of us. Just wanted to back up those people who decide to forgo any treatment at all - they're all individual decisions based on the specific person and there are no right or wrong answers.

Now I've assuaged my own guilt for letting my mom do chemo when she was too weak to handle it (despite what the doctors said).

Best of luck to everyone and let's have some miracles!

-Joyce

10 (edited by JeffG Mon, 14 Apr 2008 16:56:21)

Re: Communication issues

Joyce--- Like I said throughout my opinion it is an individual choice and I respect that.  I feel there are many factors and reasons why some choose to fore-go treatments and go for quality til the end.  I surely weren't attacking Robynhar for her husband's choice.  My first few years started out the same way as her husband and then I had a change of heart/purpose.  I just feel there is such an array of possiblilities in progress and I just differ in my opinion about chemo not being of any help.  It's like the flu, smallpox, any other historical epedemics you can think of, someone has to find the right combination and I would just like to contribute as much as I possibally can until a miracle happens or my time to move on comes around.  I am happy that Robynhar and her husband built everlasting memories and again I respect their right for making their individual choice in dealing with this cruel disease. God's love and support goes out to her and all she has endured. 

God Bless,
Jeff G.
P.S. I think we are all mature enough to be able to agree to disagree.  At least I feel that way.

Take it to the Limit,One More Time! (Eagles)

Re: Communication issues

Hey Jeff,
I didn't mean to come off as sounding combative - I would agree to disagree anyday, but the fact is that I agree with you! I'm just putting it out there for those who may be reading this board feeling full of "what ifs" and regretting what they did or didn't do.  Some people just don't respond to chemo - or there's just not enough time because the disease just progresses so rapidly, or there are other medical issues. 

I didn't think you were attacking anyone, as I feel I know you by now and I really admire you, but I could understand Robynhar's sorrow and bitterness since she's lost a loved one and I'm sure she's going over every detail in her head.  I've felt the guilt and wished I had done more for my mom, though I know it's useless to put myself through that.

You've got great spirit and you've tried everything under the sun and you're living proof that people can fight this thing. I wish everyone had your attitude and I wish everyone could fight this for 9 years and come here to tell us about it.  I sincerely hope some advances are made soon and we'll all benefit. 

So I agree to agree with you. Keep the hope alive.
-Joyce

Re: Communication issues

Hi Joyce... Your such a sweetheart!  It is difficult sometimes to type what your really trying to put across on this site without it coming across the wrong way to some.  You know, I'm glad you agreed to agree to agree and I agree with you as well.  I thank you kindly for your supportive comments.  I wish we could be guardian angels and just go around and vanish this disease in everyone affected ! Back to the Doc on Thursday.  Fluid seems to have dissapated.  Probally will go another round of Taxotere.

Tootles!
Jeff G.

Take it to the Limit,One More Time! (Eagles)

Re: Communication issues

Funny that the title of this thread is "communication issues" - yes, things don't come out the right way in writing sometimes. Glad we cleared that up.

Best of luck, Jeff - keep us posted! We're all pulling for you.

Now I'll let the original thread continue and butt out!

Joyce

14 (edited by marions Wed, 16 Apr 2008 13:52:29)

Re: Communication issues

For most of us, at one time or another, the issue of chemotherapy comes under debate, and so it should given the disease progression, and subsequent, possible need for intervention. 
While battling this cancer with my husband it was the oncologists, surgeons, and other attending physicians who consistently agreed/disagreed with the approach of the other,  each presenting a logical argument based on their personal experience with CC and the clinical data available.  We took in account their opinions, compared it with our findings, discussed it within the family, and ultimately allowed my husband to choose the direction of his treatment.  Unfortunately, not in all instances is the patient able or, capable of doing so thereby placing us caretakers in the position of making a decision on their behalf.  It is a tough spot to be in as we want to do the absolute best for the people we love and yet, if ultimately our decision does not reward us with the desired results we are left with self doubt and possible blame resulting in feeling as having failed the ones we love so much.   
I have learned and come to grips with the fact that although, my husband choose to continue to demand chemotherapy in spite of the apparent negative response  that it was his way of exulting some control over his illness and thereby ultimately choosing his way of battling this disease.  Personally, I came to understand the fact that decisions made by my husband or myself have resulted in both, positive and negative outcomes however, those decisions derived from the absolute best of intentions and were meant to achieve a common goal  that being a cure or, a possible reprieve from this cancer.  Certainly, in retrospect occasionally, some doubts will creep in to my mind however, what we should have done or possibly could have done instead truly, is left to the imagination as we simply do not know the outcome of other approaches, and we will never know.

Just wanted to share this with you.
Marions

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