• From: Kaleva MI United States
  • Registered: Mon, 24 Sep 2012
  • Posts: 27

Topic: Update from new patient visit at U of M

Well, I don't have a lot of great news to report. I found out today that I have advanced andeocarcinoma stage 4. The stage 4 comes from the cancer metastasizing inside my liver. Dr zalupski is positively the sweetest Dr. With an amazing bedside manor. He has so much compassion for his patients. He was very straight fcorward with me in saying thant I cannot be considered for surgery or transplant at this time due to the size of the main tumor. The other satellite tumors are about 1 to 2 cm. and  it appears the chemo is starting to react to the tumors with the shrinkage.
I know I have much to be thankful for, but I felt let down after the appointment today, I guess I was expecting some magic  cure to  change the course I am on. Unfortunately I learned that this is a very rare cancer and prayers and a miracle are truly the only cure .God bless everyone and forgive me for
any negative comments. Just struggling right now!!!


God bless,
Darla

Ready to fight the battle of my life!!!!!  With God as my guide!
  • Lainy
  • Lainy
  • Moderator
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  • From: Phoenix AZ
  • Registered: Fri, 13 Jan 2006
  • Posts: 8,219

Re: Update from new patient visit at U of M

Dearest Darla, never apologize on our Board, we understand more than you know.
What did Dr. Z feel you should do to continue some form of treatment? Did you mean that the chemo is shrinking the tumors? If so "shrinkage" is one of our favorite words. Yes, this is a very rare Cancer and I have been saying that CC seems to pick the most intelligent and beautiful people so maybe everyone should get dumb and ugly! Darla, feel free to come and vent here at anytime, we have broad shoulders. Sending prayers your way and please try to be strong!

                                         I asked for strength.
                     God gave me difficulties to make me strong.
                                         I asked for wisdom.
                              God gave me problems to solve.
                                        I asked for prosperity.
                         God gave me brawn and brain to work.
                                         I asked for courage.
                           God gave me dangers to overcome.
                                         I asked for patience.
            God placed me in situations where I was forced to wait.
                                         I asked for love.
                     God gave me troubled people to help.
                                         I asked for favors.
                               God gave me opportunities.
                               I received nothing I wanted.
                             I received everything I needed.
                                                                              By Aaron Hoopes

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.
  • From: Uniontown, Ohio
  • Registered: Fri, 23 Sep 2011
  • Posts: 1,488

Re: Update from new patient visit at U of M

Hi Darla,

I am Lauren's Mom. I know you are friends with her on Facebook. I am sorry you are disappointed after your visit to U of M. I understand you weren't disappointed by your care, just by what you were told. We have been there before too. You get your hopes up so much about a procedure, surgery, or tumor shrinkage and when it doesn't go how you had hoped it knocks you down for awhile. You have to pick yourself back up and fight, hope, and pray. I am glad you got to meet Dr. Zalupski today. He is such a dear man. Are you going to be seeing him from now on or was it a 2nd opinion? I know he will do everything he can to help you. It is too bad we didn't get to meet you today. Lauren had an appointment today, but it was cancelled because of her allergic reaction to Oxaliplatin and she is just taking oral chemo at home until her CT scan Dec. 4th. I am happy for you that your tumors have shrunk. That is a good thing. I hope your tumors continue to shrink and one day surgery is possible. Take care and and wishing you all the best.

Love, -Pam

Hoping for a miracle for my daughter, Lauren.

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.

Pamela's Website

  • From: Kaleva MI United States
  • Registered: Mon, 24 Sep 2012
  • Posts: 27

Re: Update from new patient visit at U of M

Dear Lainy,
You are such a joy to talk to and always have a word of encouragement. Thank you for that beutiful poem, that was just what was needed.

As far as the chemo is concerned, the course I am currently taking is working. I take cysplatin and gemzar, then gemzar then a week off. Dr zalupski said the chemo is working so we need to stay on track with the series I am on now and then look to another cat scan 6 months after the last which was oct. 11th. He never said I would never make it to possible surgery, just that right now it was not possible.
I know that God has a plan for my life, I am just trusting Him right now for the outcome, as scarey and uncertain as that is.

Thank you so much for your words of encouragement, you don't even know how much that helps. I am so happy I found this new family!!!

Love,
Darla

Ready to fight the battle of my life!!!!!  With God as my guide!
  • From: Kaleva MI United States
  • Registered: Mon, 24 Sep 2012
  • Posts: 27

Re: Update from new patient visit at U of M

Dear Pam,
Thank you so much for your words of encouragement. You are right, Dr. Zalupski was wonderful. My father, husband and one of my daughters came to my appointment today and were all pleased with the caring and compassion he showed all of us, even when we had many questions. This was a second opinion/ consultation as to treatment options. Right now I guess we just need to see the tumors continue to shrink with the chemo. 

Your daughter is so sweet and we are friends on Facebook. I am so happy that I met her and other cc patients who have so much in common. I sure hope Lauren does well, it would have been wonderful to meet her in person. I will come back to u of m one day in the future. I guess they don't do transplants though.

You are right about feeling down and needing to bring yourself back up. I try to stay as positive a I can, but sometimes just get mad. Once again though, I know that God is in control.

Thank you, God bless you and Lauren too !

Ready to fight the battle of my life!!!!!  With God as my guide!
  • Lainy
  • Lainy
  • Moderator
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  • From: Phoenix AZ
  • Registered: Fri, 13 Jan 2006
  • Posts: 8,219

Re: Update from new patient visit at U of M

Well, Darla, I hope toorrow you will feel better about everything, I do now tha tI understand what is happening.Sometimes I need a brick to the head! For now we will only think about shrinkage and it is already happening! SHRINKAGE

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.
  • From: Uniontown, Ohio
  • Registered: Fri, 23 Sep 2011
  • Posts: 1,488

Re: Update from new patient visit at U of M

Hi Darla,

U of M does do liver transplants. Lots of them. My daughter and son-in-law have been in on some of them. It's just that many people with this cancer don't qualify for them. Lauren doesn't qualify for one because of tumor placements and questionable lymph nodes. From what I have been told by the liver surgeon is that taking anti rejection drugs after transplant could cause even one cancer cell to multiply rapidly and fill a person with cancer. So we have pretty much scratched a transplant off our list, but are still hopeful for a resection one day. Take care.

-Pam

Hoping for a miracle for my daughter, Lauren.

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.

Pamela's Website

  • Registered: Thu, 09 Sep 2010
  • Posts: 533

Re: Update from new patient visit at U of M

Darla-I am sorry about your news but I can back back up Dr. Zalupski's comment "prayers and miracles are the cure", I am proof!! I always post that I am alive because of God, 2 strangers, and Dr. Chapman and I always remind everyone that Dr. Chapman would list it the same way!!! My story has so many miracles!!
Praying for miracles shrinkage and surgery (resection or transplant we aren't greedy!!)-Cathy