1 (edited by rebeccadonohue72 Thu, 21 Feb 2013 19:11:57)

Topic: My Mom Recently Diagnosed (and we can't figure out which end up)

I just joined the foundation and am grateful that I stumbled across this in all of my google searches.  My mom, who is 68, was diagnosed with metastatic cholganiocarcinoma, in either late stage 3 or stage 4, and it's been a disaster.  We are all trying to wrap our heads around this, manage questions from concerned family and friends while staying focused on getting her medically stable. 

In short, everyone (including her internist) thought she had the stomach flu in early January.  After 2 weeks, she was getting worse and by 2/9, she was jaundice, in pain and weak.  We quickly checked her into a fantastic local hospital to find out that we had a cancer situation--first they thought it was liver, but then it was pancreas, then it was gallbladder.  We finally found out that it was a bile duct and that it spread to the majority of her GT tract.  A stent didn't provide any relief and as of 2 days ago, she received a side drainage option.

Our oncologist isn't optimistic.  She feels that surgery is out of the question, radiation would put her liver and overall health in worse risk (she is bloated, barely able to talk and on morphine right now) and that once she gets out of the hospital, we can talk about chemotherapy but it would only increase her life in a small increment that may not be worth the side effects.

I'm sure that this story is not uncommon but we are scrambling.  We are sending our files to Northwestern in Chicago and Johns Hopkins to get another opinion.  Our rational brains are working but we are emotionally lost and while we have rally cry that we will fight this, our information is incomplete and we are lost. 

I am writing for any insight...suggestions...help...anything for us to grab onto and turn this around.  We have two paths underway:  1.  BEATING this and 2.  being realistic and focusing on my mom's happiness. These two points are in direct conflict which is why we are so lost.

Any thoughts or recommendation is a blessing.  Thank you.

Re: My Mom Recently Diagnosed (and we can't figure out which end up)

Dear Rebecca, welcome to our remarkable family but sorry you had to find us. First of all please know you are doing all the right things especially to seek out immediate other opinions. My husband had external side stents and after his Whipple Surgery 5 different ONCS and DOCS told him Chemo would not help him. We opted out but he still had pretty much quality life for 5 1/2 years and was 78 when he passed 2 years ago. I do have a hint to ease things up for you. Make a permanent e mail list and every evening sit down and send out an e mail with details to satisfiy family and friends, advise them that you just simply have to give all your attention to Mom and will try real hard to send out info each evening....so no phone calls please. It is just too tiring to keep repeating things and that you are all doing the best you can. This worked wonderfully for me. After that NO one bothered me, as they all waited for the nightly e mail.
Teddy was also on low doses of Morphine. Listen to your gut it will not steer you wrong.  While we don't like ONC's giving up on us I would wait now for your other opinions to come through then decide what you want to do. To chemo or not is always the biggest decision and one the patient must make for themselves if they can.  While we always try to stay realistically optimistic, sometimes the best way is to accept what cannot be changed and see to it that our loved ones stay as comfortable as they can. You have come to the right place and I promise you that once a decision is made and a plan is in place things will clear up for you all. Please do keep us posted as you are NOT alone, you have a whole new family who care.

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: My Mom Recently Diagnosed (and we can't figure out which end up)

Hi,
Why northwestern in Chicago? John Hopkins is a good choice for getting a complete picture on your mom's current disease situation. Northwestern is famous in its interventional radiology treatment such as radioembolization but I will not choose radioembo for patient over 65 due to poor experiences on this message board at this point.( I am only a patient and not a doctor.)
If you live in Chicago, for chemotherapy consult, University of Chicago may be another place to go to. Base on the short description above, it looks like systemic chemotherapy is the only choice for tumor which had metastasized to other parts of the body.
Lainy's suggestion above also holds true as well with regard to quality of life over quantity of life.
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: My Mom Recently Diagnosed (and we can't figure out which end up)

Welcome to the site Rebecca and so sorry you had reason to you find us and so sorry that your mother is going through this. 

As Lainy said the decision to do chemo or not is a very personal decision and once it is made my feeling is that you should own the decision and never second guess yourself.  People often feel better once they have a plan in place and are moving forward. Sounds like you are doing that now.

We are all here for you, so visit often.  I am sure others will come along with more information but I wanted to make sure I welcomed you.

Take Care,
-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.

Re: My Mom Recently Diagnosed (and we can't figure out which end up)

Hi Rebecca.  We live in the Chicago area also.  Despite all of our excellent medical facilities here, there is not a lot of expertise in cholangiocarcinoma.  We consulted with Dr. Daniel Catenacci at the University of Chicago who is knowledgeable about cholangiocarcinoma and is conducting some clinical trials.  I think U of C is the best choice in Chicago but we are also exploring options outside of this area so we will be prepared if this chemo regimen stops working. My husband is taking a very aggressive approach to fighting his cancer but this is not the right course for everyone.   I wish you and your mother the very best.

Re: My Mom Recently Diagnosed (and we can't figure out which end up)

Hi Rebecca,

Welcome to the site although I am very sorry that you had to find us all. And I am sorry to hear about your mum. I first came here after my dads diagnosis so I know how you feel right now and what you are going through as well. I'm glad that you have joined us though as you are in the best place for support and help and I know you will get much of each from everyone here.

I know what you mean about trying to get your head around everything and it is tough to do with everything that you have to deal with right now. But from what you say it sounds to me as if you are doing everything that you can to help your mum right now and I know how much that will mean to her. Keep doing what you are doing and keep coming back here as well. If you have questions then ask away and we'll do our best to help answer them for you.

My dads diagnosis was very similar to your mums in that they thought it may be gall bladder issues, then CC and it took aver 3 weeks to fully diagnose it. His CC was deemed inoperable and he had to decide as well about quality of life issues and treatment. He had a choice of chemo or PDT and he went for the PDT as he felt it would give his the best quality of life for the time he had left.

Like the others have said, chemo or not is not an easy decision to make and there is no right or wrong answers there. It is a personal choice to make and I know that your mum will make the choice that is right for her. When my dad decided to go for the PDT I told him it had to be his choice and I would support what ever decision he made.

I so know that your head will be spinning right now, mine was when I was where you and your mum are. But coming here and everyone here helped me so much and I am sure that this will be the case for you as well. So please, keep coming back here. We are all here for you and we care.

My best wishes to you and your mum,

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: My Mom Recently Diagnosed (and we can't figure out which end up)

Hi Rebecca,

I can't really add anything more than was already said. I wanted to welcome you to this site and tell you that I am sorry to hear about your Mom. It is so very hard to see someone you love not feeling well and wondering what to do. It makes a person feel very scared and helpless. I am hoping whatever is decided for your Mom's treatment makes her feel better and she begins to improve. I hope you continue to update us on your Mom's condition.

Hugs,
-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: My Mom Recently Diagnosed (and we can't figure out which end up)

Thank you all of your support and incredible advice.  It feels like I already have another family extension who can help me (and my family) sort this out.  The St. Louis oncologists have recommended that she go home and live out her life which is now estimated at 6 weeks (on the generous side).  We were blown away when we heard this information.  The team felt that she was not strong enough for chemotherapy and that she may not make it through chemotherapy. 

Thank you for the Chicago referral.  My father's prostate cancer doctor has the file and is sending it to University of Chicago--it's incredible how things come together and we believe it may be the doctor that was mentioned.  We are scrambling for a second opinion, trying to be respectful of my mom's wishes and keep our spirits up in front of her. 

We are looking for a Johns Hopkins referral--I've started making phone calls to get her file in front of someone.  If anyone has a specific Johns Hopkins referral, I would be so grateful.

Thank you all--it is clear that everyone at this forum is amazing, helpful and overall, finding a way to understand and cope with this disease.

Rebecca

Re: My Mom Recently Diagnosed (and we can't figure out which end up)

Rebecca...Call Dr. Choti's office at Johns Hopkins.  He was my surgeon 2 1/2 years ago and is absolutely WONDERFUL.  When you call, if you have any problems, (which I don't think you will with Ann who will answer), ask for a call-back from Eden (his nurse).  Tell her someone (you can mention me) said to call.  He will give you a full answer..is extremely competent and also kind.  You will know where you stand  and what the options are.
Best of luck.  Sending all good wishes and lots of hugs,
Kathy Wright

Re: My Mom Recently Diagnosed (and we can't figure out which end up)

Rebecca.....a warm welcome from me to you also.  I too am very sorry to hear of your Mom's condition.  Rebecca, already you are doing a fantastic job in obtaining information in re: to your Mom's treatments.  In today's age, we have to advocate for our loved one's and the medical community is eager to work with us.  Therefore, don't hold back from obtaining additional information because; an educated decision is based on the knowledge we obtain. First and foremost though, I am hoping for your Mom to be comfortable.
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: My Mom Recently Diagnosed (and we can't figure out which end up)

Kathy and everyone:  thank you!  thank you!  I've gotten the Johns Hopkins information to my day and as power of attorney, he will be contacting Dr. Choti (and we have Dr. Catennaci underway).  I'm grateful for how responsive and emotionally involved everyone is in this patient group. 

Tonight, I feel like I can rest a little easier knowing that we are trying to get answers and do the right thing--and that we are not grasping for straws.

Thanks to everyone and I will keep you posted.  You are a fantastic group.

Best and feeling incredibly lucky,
Rebecca

Re: My Mom Recently Diagnosed (and we can't figure out which end up)

Hey Rebecca,

You have gotten wonderful advice and feedback already.... I just wanted to chime in that we are also at University of Chicago with my mom (55 years old)and she responded really well to the clinical trial with Dr. Catenacci. She was on Folfirinox since June, 2012. It was rough and there were many ups and downs but she is still fighting, but I think it is a good place to start. Good luck to your family!

Kristina

Re: My Mom Recently Diagnosed (and we can't figure out which end up)

Hi Rebecca,
       
    You will certainly find loads of information here easily compared to hours of net search as lots of eperiences have been pooled in. 

just wanted to share with you, we are taking chemo trmnt in NYC but also are taking advice and nutritional supplements from Dr. Keith Block, MD, medical director of the Block Center for Integrative Cancer in Chicago. They were recommended by a colleague from CA. They do a nutritional profile to help analyze and boost the immune system and ability of one's own body to fight cancer.

Rgds,
Neeru

Faith works Miracles.

Re: My Mom Recently Diagnosed (and we can't figure out which end up)

All,

Just wanted to provide an update regarding my mom and thank you again for your support.  Sadly as I write this, I'm on a plane back to St. Louis to be by her side.  We received devastating--reeling--news today that her liver has begun to bleed and that we need to consider hospice options.  Chemotherapy is no longer an option. 

Our friends and family look at us in disbelief.  We are in disbelief.  This is an incredible, strong woman who was full tilt into Christmas and never missed a beat.

We will keep you all posted but thank you for your prayers and kind thoughts.  We just can't believe where we are right now.

Rebecca

Re: My Mom Recently Diagnosed (and we can't figure out which end up)

Dear Rebecca,

I am so sorry to hear the news about your dear Mom. My prayers are with all of you. May you find some special time to spend with her.

Hugs and 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: My Mom Recently Diagnosed (and we can't figure out which end up)

Rebecca, I am so terribly sorry about your MOM. Hospice is probably a wise choice now as they will see to it that Mom is kept as comfortable as possible. My heartelt prayers, wishes and thoughts go out to your Mom and your family. You never know how strong you are until "strong" is the only choice you have! Hang in 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: My Mom Recently Diagnosed (and we can't figure out which end up)

Rebecca...My heart is with you and your family. 
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: My Mom Recently Diagnosed (and we can't figure out which end up)

So sorry to hear of the latest events Rebecca.  My thoughts are with you and your family.
-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.

Re: My Mom Recently Diagnosed (and we can't figure out which end up)

Rebecca, I am so sorry. Peace to you and comfort to your dear mother during this precious time.

Willow

Re: My Mom Recently Diagnosed (and we can't figure out which end up)

All, I wanted to provide everyone an update.  Sadly, my mom passed away last night in St. Louis. She was surrounded by her family and friends.  She could hear us nearly to the end and we know that she is now safe.  We are stunned and everyone that knows her (or even saw her 3 weeks ago) cannot believe it. 

Through a referral in Chicago, we are making contact with the Center of Cancer Research (National Institute of Health) to learn from this disease and hopefully, unlock a new clue that can help others.  We have reached out to Dr. Thorgeirsson today and are getting an autopsy underway ASAP.

If anyone knows Dr. Thorgeirsson personally (I have sent him an email), please let him know that we are working toward giving him any information that he needs.  I'm hoping to hear from him soon but we are working with his team to send them what they may need.

I'm grateful for the support, help and kindness that this patient forum has provided.  Hearing your stories and having you as a part of this terrible event has softened the blow and given me some peace.  I wish everyone the best and hope that my mother, Ellen Spengemann, can help your loved ones and others to come to have a good, solid fighting change to beat this cancer and live life as it should be.

Love to you all,
Rebecca Donohue

Re: My Mom Recently Diagnosed (and we can't figure out which end up)

Dearest Rebecca, I am so very sorry to hear this but Mom is now in the best company ever and at Peace. How wonderful of you to want to promote something, anything that might help others! As I always say, Mom's never really leave their children and you will feel her all around you.  Please accept my Prayers and thoughts, I just know she was so very proud of you!

Letter from Heaven  by Ruth Ann Mahaffey

To my dearest family some things I'd like to say
But first of all to let you know that I arrived okay,
I'm writing this from Heaven. Here I shall dwell with God above
Here, there's no more tears of sadness. Here is just eternal love.
Please do not be unhappy because I'm out of sight
Remember that I am with you every morning, noon and night.
That day I had to leave you when my life on earth was through
God picked me up and hugged me and He said "I welcome you,
It's good to have you back again,
you were missed while you were gone,
As for your dearest family, they'll be here later on.
God gave me a list of things that he wished for me to do
And foremost on the list was to watch and care for you
And when you lie in bed at night, the days chores put to flight
God and I are closest to you . . in the middle of the night.
When you think of my life on earth and all those loving years
Because you are only human, they are bound to bring you tears
But do not be afraid to cry, it does relieve the pain
Remember there would be no flowers, unless there was some rain.
One thing is for certain though my life on earth is o'er
I'm closer to you now than I ever was before.
There are many rocky roads ahead of you and many hills to climb
Together we can do it by taking one day at a time.
When you're walking down the street and you've got me on your mind
I'm walking in your footsteps, only half a step behind
And when it's time for you to go . . from that body to be free
Remember you're not going . . you're just coming here to me.

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: My Mom Recently Diagnosed (and we can't figure out which end up)

Dear Rebecca,

I am very sorry indeed to hear of the passing of your dear mum. Please accept my sincere condolences. I wish that there was something that I could say that would help right now. As you say, your mum is safe right now and is suffering no more. Please know that we are all here for you and my thoughts are with you and your family right now.

Hugs,

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: My Mom Recently Diagnosed (and we can't figure out which end up)

Dear Rebecca,

I am so sorry to hear about your Mom. How thoughtful of you to try and help everyone with CC. Bless you Rebecca, and may your dear Mom rest eternally in peace.

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: My Mom Recently Diagnosed (and we can't figure out which end up)

Rebecca,

Please accept my condolences for your loss…Wishing you peace to bring comfort, courage to face the days ahead and loving memories of your mom to forever hold in your heart.

Angie