1 (edited by Formydad Thu, 14 Jun 2012 18:35:56)

Topic: Newly diagnosed

Hello all!

I can't same I'm glad to be here but I can say I'm glad this site is here.  My dad was initially diagnosed with liver cancer but after more tests they found he has bile duct cancer too.   I don't know much of the details (compared to other posts I've read) other than he has started chemo today.  He started a clinical trial at the University of Michigan.  His port was put in on Tuesday and had 7 hours of partially chemo and anti-nausea medicine today.  He will take home a fanny pack with chemo for the next 48 hours and then a visiting nurse will come on Saturday to take chemo out of port.  He will have chemo every other Thursday with blood work and Dr. visits in between.

He is a healthy man, 67 years of age.  There are no other health issues other than high blood pressure.  He was a firefighter for 25 years and owned his own electrical company for many years too.  He has four children and has been married to my mother for 40 years.  This has been a shock to all of us.  His initial signs were loss of appetite, weight loss and then he had severe gas-like pains.   All of these symptoms started about 2 months ago.  His general doctor (who he has seen for years) had suggested all the test to look for this cancer.  They started at Beaumont Hospital in Michigan but were unhappy.  They moved to U of M and are very pleased. 

I believe this is the info for the clinical trial...

IRB Number: HUM00035756
Title: adults with advanced or metastatic biliary cancer
Abbreviated Title: UMCC 2009.119
Condition Category: Cancer - Gastrointestinal
Purpose: Characterize the safety profile of ARRY-438162, determine the maximum tolerated dose of ARRY-438162 through review of all available Cycle 1 data and the assessment of dose-limiting toxicities
Study Description: Characterize the safety profile of ARRY-438162, determine the maximum tolerated dose of ARRY-438162 through review of all available Cycle 1 data and the assessment of dose-limiting toxicities, characterize the plasma harmacokinetics of ARRY-438162 and a metabolite AR00426032
Eligibility:

    Age Range: From 18 To 100 years
    Gender:Both Female and Male
    Ethnicity: All
    Race: All
    Smoking: Both Smoking and No-Smoking
    Medication: No Restriction
    This study is seeking: Patient with Specific Condition
    Handedness:Either
    adults with advanced cancer
    advanced GI cancer
    advanced solid tumors
    biliary cancer
    eye exam
    metastatic biliary cancer
    muscle biopsy
    tumor sample

Tags: Advanced , Biliary , Cancer , Gastrointestinal
Location of Study Visits: Ann Arbor, MI
Principal Investigator: Zalupski,Mark M


I live in Nevada with my family, including my sister.  My two brothers reside in MI (with their families) along with my mother and father.  Needless to say, it is difficult to get information sometimes.  My mom is very positive and doesn't want to worry us, my brothers are doom and gloom, so I prefer not to speak with them.  My outlook is to stay positive.  Anything can happen, especially with prayer, hope, love and support. 

I appreciate the support here.  If there is anything I need to add or have my mother ask while she is at the doctor please let me know.  Thank you for taking the time to read our journey!

Re: Newly diagnosed

Dear ForMyDad, welcome to our extraordinary family but sorry you had to join us. It sounds like all the right things are being done. We understand how you feel but now that your Dad has a game plan eventually the fright turns to fight plus attitude and and strength are so very important. Perhaps you could let your Mom know that you WANT and NEED to know what is happening as it is extremely hard to be so far away and not know what is happening. Or, perhaps you could get her to give the ONC permission to let you know. Staying positive is the best, or as I like to say, realistically optimistic. You have come to the right place and please keep us posted, we truly 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: Newly diagnosed

ForMyDad: A warm welcome.  I believe that you are talking about this Phase I study: https://www.umms.med.umich.edu/umclinic … &TYPE=

Patients enrolled in clinical trials are watched closely however; if your Mom notices anything that she feels uncomfortable with, then she should not hesitate and call the coordinator immediately. 

I don't believe that anyone on this site is undergoing this particular clinical trial, but if there is, then I hope for that person to share more information with us. 

If your parents are inclined to do so, they can request to be put in touch with one or more of the other patients  enrolled in this trial.  Please stay positive 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

Re: Newly diagnosed

Hi Formydad,

Welcome to the site. Sorry that you had to find us all here but I'm glad that you have joined in with us as you've come to the best place for support and help, and I know for sure that you will get tons of both from everyone here.

Sorry to hear about your dad. I can relate to how you feel right now as my dad went through this as well. But it sounds like your dad has a game plane in place and that is good to hear. I hope that his chemo goes well and please keep us updated on how that goes for him, my fingers are crossed for him. And thanks for letting us know what trial he is on too.

Staying positive is good and a good but reaistic attitude will help you all here. As you say, anything can happen and who knows what lies ahead. And I like what you say about your brothers here, if they are all doom and gloom then not speaking with them about your dad sounds okay to me. I know that your mum doesn't want to worry you and that is fair enough. But maybe you could speak with her and tell her that you would prefer that she tell you everything as to what is going on with your dad. How is your dad with talking about stuff with you? Some may find it hard but my dad was able to discuss eberything with me.

I know that all of thsi will come as such a shock to you. But stay positive and know that we are all here for you. We know what you are going through and we care,

Best wishes to you and your dad,

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: Newly diagnosed

Happy Tuesday,

My dad had his first chemo session (7 hours at U of M) on Thursday.  He went home with a port for Friday and until evening on Saturday.  A visiting nurse came and unhooked the port.  He goes for blood work on Thursday.  I spoke with him and he said he felt fantastic (doctor said he won't feel side effects of chemo until session 2 or 3).  He and my mom seem to be doing well and happy.  He sounds a bit weaker on the phone and said he had hiccups for three days since chemo (anyone know if hiccups are a side-effect).  My brothers went to visit for Father's Day and ended up feeling happy they did.  My sis-in-law told me my one brother didn't' want to go because he didn't want to see him.  My SIL told my brother not to put him in his grave yet?!?!  I don't understand that kind of thinking.  He is fighting it and staying optimistic.  We can only take a day at a time.

Re: Newly diagnosed

Hi Formydad,

I am glad your Dad is being seen at U of M. My daughter, Lauren, has CC and we have been going to U of M since Aug. 2011. Dr. Mark Zalupski is also her oncologist. She is on a clinical trial, just not the same one your Dad is on. She does have a chemo pump she wears home for 48 hours, but I had them train me to disconnect it myself. I had them train me because we had a nurse come to our house the first time to disconnect the pump and she didn't know how to. So I took the matter into my own hands. That way I know it will be done right and hygenically. We really love U of M Cancer Center and think Lauren gets excellent care. I wish you and your Dad all the best in his fight with CC. Please feel free to ask me anything you wish about our experience with U of M, the doctors, or anything else. I will be happy to help. Take care.

-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: Newly diagnosed

Hi Pam,

Nice to meet you!  I am sorry to hear about your daughter but it's almost been a year since diagnosis, that's great!  My parents seem really happy with U of M.  I'm glad you feel the same way.  It's difficult being far away and not hearing "all" the information they are given.  How was your daughter diagnosed, stage, and effects from chemo?  How many treatments has she had?  How do you feel about the clinical trial?  Thanks so much for answering questions, this is all so new!


PS-I'm sure I'll have more!

8 (edited by Pamela Tue, 19 Jun 2012 19:34:20)

Re: Newly diagnosed

Hi Formydad,

My daughter, Lauren, was only 25 when she was diagnosed on Aug. 29, 2011. She had been having side and back pain since April. The first doctor she went to said she needed physical therapy for a bad back. He never bothered to tell us that the ultrasound he ordered showed a mass on her liver. We found that out later. So, for a while she did nothing. Then in July she just knew something wan't right. She was getting full after a few bites of food and lost around 50 pounds. She thought the weight loss was from sweating and running around at a very physical job. So she went to a different doctor, who saw something weird on the ultrasound report and he ordered a CT. He was shocked to see a huge tumor in her liver and sent her to a gastroenterologist, who in turn wanted to send her to Cleveland Clinic. We chose U of M because my oldest daughter and her husband are both Anesthesia residents there. They wanted Lauren to see a liver specialist and surgeon named Dr. Sonnenday. We saw him and he ordered a bunch of tests. He had to break the news to Lauren over the phone that she had CC. The worst day of our lives. We then started to see Dr. Zalupski. Lauren started chemo the beginning of Sept. She was in a clinical trial where she received Gemzar and Cisplatin in the hospital. Her chemo was also seven hours long. She was then hooked up to a pump for 48 hours. The chemo in the pump was 5-FU. I believe she has had 20 rounds of chemo. A few months ago Dr. Zalupski took her off the Cisplatin and she continues with the other two chemos. Reason being, Cisplatin is very hard on the kidneys and he didn't want to cause damage. It also lowered her platelets a lot and she had to skip chemo a few times because of it. He said if her new scans show any tumor growth, he can put her back on Cisplatin or Oxaliplatin, which is a little less harsh. She has done very well on her chemo. She was more tired when she also got the Cisplatin , but being on just the two chemos, you wouldn't even know she just had chemo. She is very lucky not to have many side effects. She did lose her hair which was pretty traumatic. She had really long, beautiful hair. It is starting to grow back since she is off the Cisplatin. Her tumors have shrunk quite a bit. The largest tumor started out canteloupe size and is now grapefruit size as of last scans. The tumor is half dead though, which is great. We never asked her stage. Lauren does not want to know. Dr. Z says that it is advanced so I take that to mean probably Stage 4. Doesn't really matter to us. She is fighting it as hard as she can. We are very happy with the trial and her progress. In May, she had a procedure called Theraspheres. Small glass radioactive beads were shot directly into the small tumors on one side of her liver. They want to kill them so she might be able to have surgery to remove the large one. She might have another Theraphere procedure on the large one before they consider surgery. She has scans next week to see how things look. We started out with things looking so grim in the beginning. But these doctors really know what they are doing. She is doing remarkably well. You should be so relieved your Dad is at such a great place. I hope I have answered all your questions and would love to answer any more you may have. Take care.

-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: Newly diagnosed

Wow!  25? God bless her.  I spoke with my mom this evening and told her I had met you on here.  She couldn't believe how young your daughter is.  How unfair?  I'm so happy to hear the approach you have taken toward this nasty cancer.  I did go to the blog you have set up for this fight.  It was nice to read about everything you are all doing.  Your daughter has a great support group. 

Some more info on my dad and his treatment.

He has liver and bile duct cancer.  The tissue of origin test came back from California and they still can't determine where it started?????  The drugs they are using in his trial are 5-Fluorouracil, Gemcitabine (sp), and Cisplatin (which you mentioned).  They have also found cancer on his 5th lumbar and on a rib (they're not concerned about it because it's not primary).  His doctor is Fakih Marwan.  Supposedly, the nurses are amazed at my father's blood levels and don't understand how he is sick with levels such as his????  I finally asked the question of the stage....ugh.  My mom said they didn't tell her a stage but she is assuming at least stage 3.  She also informed me that it is in the lymph-nodes surrounding the liver so after all my reading I would say it is stage 4.  But just like you and your family, we don't want to know (I kinda do, just the way I am).   

They're ready to fight it and reading stories like your daughter's is very uplifting.  I'm all about positive thinking and kicking butt!  My parents are at U of M for chemo next Thursday...if you happen to be there.   My dad is about 6'3" 265 (used to be) maybe 240 now and my mom is short in stature, red curly hair (short) and very friendly and talkative.  I know you mentioned your daughter likes to close the curtain but if you happen to feel like talking they'll be there.  I told her your name and your daughters (hope you don't mind), small world. 

I will keep your family in my prayers.  Thank you for all of the info.

Re: Newly diagnosed

Hi Formydad,

Sorry I assumed your Dad's oncologist was Dr. Zalupski. Your Dad is on the same chemos as Lauren. So maybe it is the same trial. I would love to meet your parents. Unfortunately, Lauren always gets her chemo on Wednesdays. She will be there Tuesday for her CT scan and Wed. for labs, doctor visit and chemo. Maybe one day we will run into each other. Lauren too has excellent blood levels. Her liver functions are all very normal. Don't think badly of us because we like to close the curtain. We don't like to see others that are super sick. They upset Lauren. Plus, she is usually hungry and eating during chemo while others are sick and she doesn't want to make them feel sick if they see food. But we love to meet anyone that has CC. We have met a few people from this site in person and have formed an instant bond. We met our friend Lisa from this site and we are all regular lunch buddies. She also came to Relay. So I will look for a tall man and a lady with red curly hair whenever we are there. Who knows, maybe one of our schedules will be changed one week and we will see each other. All the best to you and your family. I will keep your Dad in my prayers. Hope to talk to you again.

-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: Newly diagnosed

Hi Formydad-

I am sorry to hear about your dad. It sucks, to be blunt. But i think being able to 'talk' about it here helps. I can't really offer any great advice to you...as i am fairly new to this puzzle. (M mom was diagnosed Dec 2011) All these other folks are the 'experts' and we are so lucky to have them here.
I can say  that i understand the frustration in living far away from your dad. i am in the west and my mom is on the east. All the info i get is filtered through someone else, whether its a sibling or my mom. I too have a bit more of a quest for knowledge of excatly what is going on, even though sometimes the Dr's dont even know. I think everyone deals with sickness on different ways (refering to your brothers) My husband is similar to your brothers... he flat out has not wanted to see my mom (even though he loves her very much) while she is going through this. I think that it is just too hard for them to deal with and they cant get over their own fear and think beyond it. . That is just my armchair psyc. opinion. ;=) I do hope that your brothers come to terms.
My main offering to you is that YOU visit with your dad and mom as much as you possibly can, spend time with him now while he is feeling OK, as well as later. I have gotten this advice from folks here as well as friends and i have made a point to  try to go east about once a month.. (i understand jobs dont always allow for this, thankfully mine understands.) I dont want any regrets later about time spent. Well, good luck to you and your family. Best.

Re: Newly diagnosed

Mmking,

It does suck!  I agree we are lucky to have these experts here because I would be lost and sad without them.  It is so difficult living far away and getting the filtered information.  I just want to know and I want to know everything.  Regardless if it is bad or good, tell me.  I understand where my brothers are coming from because they are "in it".  They have gone to doctor visits with my mom and dad so they hear the news straight from the doctor, perception is reality.  I am planning a trip home this summer in August...hopefully.    Good luck and to you and yours!  God Bless!

Re: Newly diagnosed

Pam,

Glad to hear Lauren likes to eat.  No worries about closing the curtain, it makes sense.  I hope that maybe one day you could meet my parents.  I sent your story about Lauren to my entire family and it seemed to uplift them.  Thanks so much.  If their schedule changes I will let you know.  God bless, and I will be praying!

PS- My parents names are Dennis and Sidni!  Talk soon!

Re: Newly diagnosed

Dear ForMyDad,

Sorry to hear about your dad but sounds like you have the right attitude.  My husband was diagnosed Stage IV ICC almost 4 years ago.  He has fought a good fight and was doing very well until he had a second chemoembolization in April.  It has been downhill ever since.  He is very ill now and very weak since losing 41 pounds in about a month.  I still hope that we can get things turned around so he can continue to fight this terrible disease.   John used to get  hiccups a lot when he was first diagnosed.  His first chemo regimen sounds similar to your dad's.  He would get chemo at the cancer center and then be hooked up to a pump for 48 hours.  Sometimes his counts would drop too low so he might have to wait another week before getting it again.  I hope your dad does well with his treatment and that your brothers will come around and be strong for him, too.  Sending prayers and well wishes your way,  PeggyP

Re: Newly diagnosed

Gemzar can cause hiccups in some people.  Out Tom recommended a teaspoon of sugar.   It helped Ben.
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: Newly diagnosed

Hi,
Thorazine 10mg tablet will help too but  RX is required.
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: Newly diagnosed

Hi all,

It's been awhile since I posted...needed a break, coming here often makes me too emotional.  My dad had his third chemo treatment last week and is doing well.  Dr. Fakih says liver is regressing,  billrubin levels are down and blood work is good.  He will go for his fourth treatment on Thursday then a scan to come in the next few weeks.  My dad does okay with the chemo, kinda slow and tired but no nausea or other side effects :-)).

He did end up in the hospital with a blood clot in his lung and is now on a blood thinner and will be for the rest of his life.  He gives himself injections at home.  He was in the hospital for 3 days. 

My daughter and I will be traveling home at the beginning of August for 2 weeks to spend time with my family.  My husband will come on the last leg of our trip and spend a week with us.  We plan on attending a chemo session with my mom and dad at U of M then going out to dinner after.   Things seem to going okay.  It's just a waiting game and than what???  I just keep praying.

Re: Newly diagnosed

Formydad....we compare this disease to a rollercoaster ride.  Many of us have learned to revel in the "highs" so that we then can sustain the bumps along the way.
Life looks good, enjoy.
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: Newly diagnosed

FORMY DAD, all in all a pretty good report. I am sure you will feel a whole lot better once you are able to have your family visit. Nothing like children and family tio boost one's morale, better than any RX. I hope his good news continues.

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.