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

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

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

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

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!

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

Hi,
Thorazine 10mg tablet will help too but  RX is required.
God bless.

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