pamela
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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
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,
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
Barbara,
Thanks for all you do. Without people like you, this site would probably not exist. Bless you and everyone else that helps make up this wonderful site.
-Pam
Hey Randi,
This is the first time I have seen this post. Just wanted to let you know I am thrilled for you about your good news. You give the rest of us HOPE. Never feel guilty for fighting and winning over this beast!! You are awesome!!
Love and hugs to you,
-Pam
Tiff,
I have a friend that goes to CTCA. She has had a horrible time with infections and just seems to be getting worse and worse. I can’t help but feel if she were at a major cancer center that she would be treated more aggressively and be in much better health. Sure, CTCA pays for your flight, your food, and all that other stuff. But if I had a choice, I would choose expert care over all the fluff. Just my opinion. Love ya girl.
-Pam
kandre,
My daughter had Theraspheres which is basically the same as SIRspheres. Probably just manufactured by different companies. What would you like to know?
I think I posted on here, but not sure. We have added a few doctors so I think I will post them all again. Such a wonderful facility!!
My daughter, Lauren has CC. She is seen at University of Michigan Hospital.
Her doctors are:Oncologist- Dr. Mark Zalupski
Surgeon-Dr. Chris Sonnenday
Radiology Oncologist- Dr. Mary Feng
Interventional Radiologist- Dr. Paula NovelliLauren has been on chemo since Sept. 2011. She had Theraspheres in May 2012. Feel free to e-mail me and ask any questions you like about the facility, doctors, or procedures.
Dear Jose,
I am very sorry for your loss. I know your sister suffered such a difficult time. She fought so hard and you did everything you could to help her. I know this time is very difficult for you. Please accept my condolences.
Love and hugs,
-Pam
Hey Jtoro,
I don’t know about any of this. I just wanted to say I am sorry you have to deal with such crap. You have cancer. That’s enough in itself to have to deal with that. I just get so mad when insurance companies think they know more than doctors and deny people treatments and medications. How would they feel if it was one of their family members. Really irritates me. I’m glad your fighting this. Keep us updated. All the best to you.
Love, -Pam
