Topic: Considering seeking a third opinion

At this point on my journey I have been told by two Oncologists that I have advanced stage 4 adenocarcinoma.  I was told that after 6 more months of chemo we would see if the tumors are continuing to respond to treatment ( as they have already with a 1/2 cm. shrinkage) and then we could consider possilbe other options.  I was told that I am inoperable and that there is not a Dr. in the US that would consider opening me up because of the risk of spreading the cancer.

I feel as if I need to do something more, but I am not sure where to start.  My Oncologists office faxed over 50 pages of medical records to the Barnes Noble Hospital for Dr. Chapman, over a month ago, and I still haven't heard anything back.

I am sure that many others have been in my position, I am just really scared and know that I need to do something. I should't just settle for the waiting game. I don't know how much time I have.  No one has ever given me that information.  I am otherwise quite healthy.  My billirubin is actually almost normal, and my liver enzymes are elevated.  The only symptoms I experience are my food not digesting properly, and an occasional pain in my side.

I have one large tumor this is 8.5 cm. surrounding the main bile duct. I also have 4 other sattelite tumors that are on both lobes of the liver.  The cancer is contained within the liver, but the Dr.'s say it has metastisized within the liver.

Thank you for listening to me rant, I think this group is wonderful and I am so glad that I found you all!!!  Any advice right now would be great!!! Thank you so much!!!

Darla smile

Ready to fight the battle of my life!!!!!  With God as my guide!

Re: Considering seeking a third opinion

Hi Darla,

Just my opinion, but if I had sent records somewhere and it had been a month of not hearing anything, I would definitely give them a call. The records might have gotten misplaced in the shuffle. Time is important with this cancer and we don't have time to waste. From what you have written, I think you are responding well to your chemo and are you are in good health. If you are not satisfied with what you have heard, get another opinion. We have only gone to U of M for Lauren's care because we are happy with her doctor and care. If we felt that everything wasn't being done that could possibly be done, we would seek a 2nd opinion immediately. You won't be happy until you are satisfied you have done all that you could. It makes me sad because I wish you could enjoy your life instead of worrying. I am glad no one has ever told you how much time you have. They can only guess and what good would it do. I hope you get all the answers you are looking for and can have some peace of mind. Take care.

Love, -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: Considering seeking a third opinion

Darla, no need for thanks, we are here so that you can rant all you want! I agree with Pam that you should call Dr. Chapman's office as that is not like him to not answer. Also Dr. Kato at Sloan Kettering is known to take 'difficult' cases. Wishing you the best and stay strong!

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: Considering seeking a third opinion

Hi Darla.  Six months seems a long time to wait to see if your current chemo regimen is working.  My husband's oncologist is ordering a scan every eight weeks so we can move quickly if the current regimen fails.   My husband has intrahepatic CC and his bilirubin level has always been normal.

Re: Considering seeking a third opinion

Hi Darla,

I agree with the other respondents- you need to strongly advoctate for yourself with this type of cancer. Doctors expect patients to call and you may as well find out the time frame they have in mind to review your case, so that you can pursue other options if it is too lengthy of a wait. I like the idea of contacting the Dr. at Sloan Kettering. With my Dad I contacted a well known Canadian Oncologist, Dr. Robert Buckman (who has unfortunately passed away) and I did so through his contact email on his hospital website. It was enough for him to eventually get in touch with me and discuss my Dad's treatment and do the same with my Dad's Oncologist. So, if you have some names and their contact emails, it wouldn't hurt to get the word out through the web- that way you may've increased your medical support team with the click of just a few buttons.

You're in my thoughts and prayers, God Bless.
Missing U

Re: Considering seeking a third opinion

Lainy,
Where is Sloan Kettering and Dr. Kato located?  I appreciate your input and I did call Dr. Chapmans office today, and I was assigned to a nurse, and she supposedly left me a call in Sept. to let me know they want the cd's and to schedule an appt for surgery consultation.  Tomorrow she will call me back.

I feel as if my prayers are starting to be answered and they are coming in abundance. 

Linda,
I did get my first cat scan after only 6 weeks of chemo. My Oncologist will probably do another one before 6 months. That was just Dr. Zalupskis thought was,  he was thinking it would take that long to see significant change ( which is what I need to be placed on the transplant list)

Good news is that I think I may be taking a trip to Missouri soon, and I am excited about that!!!!

God Bless you all and thanks,

Darla

Ready to fight the battle of my life!!!!!  With God as my guide!

Re: Considering seeking a third opinion

Pam,
You are such a sweet and thoughtful person.  I appreciate all your advice.  I know that we need to act quickly and that was why I was getting nervous.  I am so happy though, that I will be seeing a Specialist soon in Missouri.  I dion't even know if this is my answer to prayer or not, but at least somehting more is happening!!

How is Lauren doing? I sure hope she is feeling well, and enjoying her life too.  Lately I have been in a depression state and just feel like I drag myself to work, and home and I have no motivation to do anything.  I see my Oncologist on Friday for chemo, I may ask her if she has somthing that will help me with pain and sleeping so I can sleep better at night.  My mind races every night and I go over everything in my mind over and over. 

God Bless you and Lauren,
thank you for everything,
Darla

Ready to fight the battle of my life!!!!!  With God as my guide!

Re: Considering seeking a third opinion

Dear Darla, I always say, when you have a game plan the fright turns to fight! Make sure you DO ask your ONC for something for pain and for sleeping!
Tomoaki Kato, M.D., is a transplant surgeon at NewYork-Presbyterian/Columbia University Medical Center. You can Google him as well. Best of luck on everything, I feel you are beginning to get your groove on!

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: Considering seeking a third opinion

Lainy,
You are right and I am feeling so much more strength and power right now.  Thank you for the encouragement, it really helps with life looks bleak.  Never thought I would be in this predicament, but I am going to fight with all I've got!!!

Maybe I will even contact Dr. Kato.  The sun is starting to shine and I have you wonderful people here to thank for that!!!

smile

Darla

Ready to fight the battle of my life!!!!!  With God as my guide!

Re: Considering seeking a third opinion

Darla, we did not do it, you did because you wanted to! We can talk until we are blue in the face but if someone really wants to change their attitude only they can do it. That is why I always feel so many of you are much stronger than you give yourselves credit for. And may I say what a beautiful lady your are, glad you posted your pretty face~!

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: Considering seeking a third opinion

Lainy,

Well Ijust got the call I was fearing. Barnes Hospital said that I do not qualify for liver transplant.  I am going to try to find another cancer center that will at least consider me.  She siad that because I have a tumor that is technically not in the liver ( the largest tumor on othe main bile duct)  so that is another reason why I don't qualify there. I also am only able to have one tumor and they said I can't have transplantation after chemo.

Wow, I went from a very excited lady to very depressed and scared again so quickly.  I know that God has a plan for me I just wish I knew what it was.

Any advice  now would be greatly appreciated.  This roller coaster ride is frustrating.

Thanks again,
Darla

Ready to fight the battle of my life!!!!!  With God as my guide!

Re: Considering seeking a third opinion

Hi,
sorry to hear about your situation.
Call Dr. Kato tomorrow at New York Pres. Hospital and get his consult. He is one of a kind surgeon who have the will and skill to try new things and he is a  world renowned liver surgeon.
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.

13 (edited by Pamela Wed, 28 Nov 2012 16:45:16)

Re: Considering seeking a third opinion

Hi Darla,

It does look like things are starting to look up for you. I really hope you find someone that will think surgery or transplant is possible. Did you ever see Dr. Sonnenday at U of M? He is a liver surgeon that saw Lauren first. If there is any way he thought surgery was possible, he would go to bat for you. He does lots of surgeries and liver transplants. Dr. Zalupski tends to be a bit more conservative.

Thank you for asking about Lauren. She is only on Xeloda right now since she had her allergic reaction to Oxaliplatin. The Xeloda is really zapping all of her strength. She has been so tired and falls asleep sitting up on the couch every day. She hasn't felt like doing much at all. She has a CT scan next Tues. and we will see Dr. Z on Wed. and decide what to do next. I am praying for a miracle, but kind of scared for what might show up. Stress from scans is the absolute worst.

Do you not take any pain meds at all? Wow, that is great if you don't need them. But if you have any bit of pain that bothers you, you should have something. Lauren uses a long and short acting morphine. Lauren also takes ativan at night and it helps her relax so she can sleep. My doctor also gave me ativan to use if I am really stressed. I have only taken it once, but I slept really well. I am also on an antidepressant which has helped a lot. I think it is great that you are working. You can get on disability with CC if you find it too difficult to work. I sure wish you all the best. Please keep us updated.

Love and hugs, -Pam

I just saw your new post after I posted this, so I am now editing. I am really sorry about the call from Barnes. I understand that you want surgery, but at this time it might not be the best thing. I know it is hard to accept, but you don't want someone operating if it is not in your best interest. Chemo can shrink things down and allow surgery at a later date. Keep your chin up, Darla. I know it is so difficult.

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: Considering seeking a third opinion

Darla, I am sorry but not that sorry. You see, I believe everything happens for a reason and I see Percy also recommends that you call Dr. Kato. I think he is pretty aggressive, Dr. Kato, not Percy! Yes, it was a down news day, but then look at the upside...maybe it was meant for you to call Dr. Kato. And if he says no surgery...he may have a new/good idea for treatment of another kind. Best of luck on this and be strong!

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: Considering seeking a third opinion

Dear Lainy and Pam,

I so appreciate both of you, you are right about me not knowing what is best and feel God is opening and closing doors right now for a reason.

I am anxious to contact Dr. Kato and my husband wants me to call md  Anderson Also and look at all of our options. I am going to call them both tomorrow.  If the door to these next options opens I will know it was mean to to be. I do trust my oncologist and she is doing the right things at this time.

Once again thank you for your uplifting words, you are both a blessing to me!!
Thanks and God Bless.

Darla

Ready to fight the battle of my life!!!!!  With God as my guide!

Re: Considering seeking a third opinion

Darla, if you call MDA it would be best to ask for the office of Dr. Javle.

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: Considering seeking a third opinion

See, you got your spirit back! Good luck with your endeavors with Dr. Kato and Dr. Javle!!

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: Considering seeking a third opinion

Darla....sorry for not joining in sooner, but I am in New York in conferences with Faster Cures and have little time to get to the board. 
I just want to encourage you to consult with specialists, as they differ in their opinions in regards to treatment.  Keep up your boxing gloves.
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: Considering seeking a third opinion

Darla....sorry for not joining in sooner, but I am in New York in conferences with Faster Cures and have little time to get to the board. 
I just want to encourage you to consult with specialists, as they differ in their opinions in regards to treatment.  Keep up your boxing gloves.
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: Considering seeking a third opinion

Darla-I am so sorry about your news from Barnes, as you know Dr. Chapman is my hero, it breaks my heart that he can't help you. I believe he is as good as it gets, but I also know that our cancer is rare and new options are happenning more often, I think Dr. Kato is another brain to be picked!!!
Lots of prayers and mracles-Cathy

21 (edited by sdcarlson89 Thu, 29 Nov 2012 12:36:13)

Re: Considering seeking a third opinion

Cathy,

Thankyou so much for your words of encouragement.  I do not have anything against Dr. Chapman or the Barnes Hospital. Unfortunately I just don't meet their criteria for transplant.  I plan to keep searching though, I am certain that there is a specialist that will be able to help me. 

I am just used to seeing my Dr. or oncologist and not having to seek other opinions.  The list of Specialists is vast and very scarey to me because it is reaching out into the "unknown".  I like what Marion said about putting on the boxing gloves, I feel that she is completely right and this is a big fight and I am ready to get in the ring!!!

I will let you know how the conversation goes with Dr. Kato and Dr. Javie also

Thanks again !!!

Darla

Ready to fight the battle of my life!!!!!  With God as my guide!

Re: Considering seeking a third opinion

Marion,

My boxing gloves are on, I have God in my corner along with my whole family, and I am ready to fight this fight!!!

Thanks so much for your words of encouragement!!!

Darla

Ready to fight the battle of my life!!!!!  With God as my guide!

Re: Considering seeking a third opinion

Pam,

I do agree with you about surgery right now not being the best option.  I just want to find a Dr. that can say, yes Darla there are other options and I am willing to help direct your care.  I know that Dr. Zalupski is on board with my Oncologist right now, and that is very encouraging. 

I am just hoping that if I find another Dr. who will say lets discuss other options that may be available.  I am also praying for Lauren and for her cancer to continue to shrink so she can be considered for re-section or possibly transplant. She is so young and beautiful!!!

I will keep you posted on what I find out.  I am also concerned about expenses of travelling, I am not sure how we are going to be able to afford it.

Thanks  for everything,

Darla

Ready to fight the battle of my life!!!!!  With God as my guide!

Re: Considering seeking a third opinion

Darla, you will find a way to get it all done. You can have a consult via email or phone to start with. I just want to mention to make sure those boxing gloves are pink, with rhinestones and lace ties!

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.