Newly diagnosed
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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.
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,
MarionHi 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.
Gemzar can cause hiccups in some people. Out Tom recommended a teaspoon of sugar. It helped Ben.
Hugs
MarionDear 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
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!
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!
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.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
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.
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 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!
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
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.
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