December 10, 2008 at 7:19 pm #24236toniakMember
Just read your post. It looks like you were able to get a lot of great information for everyone. The people here are amazing.
My Grandmother was diagnosed Oct.3 2008 and had surgery Oct. 13th. She is 83 and has diabetes and a heart condition. Her choice was to not have chemo and to try to stay as comfortable as possible.
I understand what you mean when you say how hard it is to watch your loved one in pain. I want to “fix” it but I can’t. I want to understand and say the right thing but I know I can’t do that either.
The only thing I’ve been able to do, to make myself feel useful, is to be her advocate. and to be informed. The thing is to be sure to get your info from a good source. The internet is great but anyone can post anything.
On the subject of stool softeners…whenever Grandma’s pain meds have gone up we’ve made sure to check those too.
Let me know if there’s anything I can do!
God bless you and your family.
TNovember 20, 2008 at 12:16 am #24235marionsModerator
Tess…Such a relief to know for you DadNovember 19, 2008 at 11:39 pm #24234lainyParticipant
Sometimes I think this should be called the Elevator disease with all the ups and downs. I am glad that your dad’s doctor is revisiting radiation. It will be interesting hear what they say. Stay strong and thank you for the update as we all care and your family is in our prayers.November 19, 2008 at 11:03 pm #24233
Thank you to everyone for your kind words & thoughts, and many significant suggestions. It certainly does appear that every CC case is different. Since I wrote late last week, Dad has received pain meds and is feeling better the last couple of days. Also, no mets to date- per the scan results today. The doctor has arranged for Dad to have a consult with radiation (tomorrow), which was originally proposed as not an option. Today was also his first chemo treatment, with Gemcitabine- and we requested that he be sent home with anti-nausea meds & stool softeners, per a posted suggestion. We have also been told this week (by Mayo’s Dr. Gores) that Dad is not a candidate for a liver transplant because his CC is intrahepatic. Wake oncology’s Dr. Kennedy has denied him as a candidate for microspheres because of high bilirubin levels (Dad’s=15.8, max allowance=2).
Thanks again to all for your hugs & prayers and for the reminders on the importance of a positive attitude.
TessNovember 16, 2008 at 1:27 pm #24232darlaParticipant
I also want to welcome you to the site. You have found the right place for support & comfort. Your Dad is not alone and now that you have found this site, you & are family are not alone either. You are in my thoughts & prayers.
DarlaNovember 16, 2008 at 9:46 am #24231roma35Member
Just want to say hello and introduce myself as a fellow caregiver for my father. I am new to this site as well, and lack some of the expertise as some of the other members, but from what I have seen and read, every CC case is different. It seems in your fathers case, the symptoms and side effects came on really quick. My father had tons of pain in his the beginning of his diagnosis in his ab area, and it was determined that his stent was infected and causing the pain.(three emergency room visits, that involved changing stent twice) It seems like the key is going to be some treatment to shrink tumor, your dad has to feel up to the chemo. Im not sure where you live, but we are currently going to Cancer Treatment Centers of America in Illinois, there are four locations , and they apply chemo and radiation with much alternative therapy, to alleviate some/all side effects. I know you think your father feels all alone, but the truth is, many battle cancer alone, and your father is not alone, he has you and your siblings and your mom. If I learned anything with this cancer: is dont look at the stats, keep asking questions, every case is different, everyone reacts differently to different therapy. My thoughts and prayers are with you, you are not alone.
BarbaraNovember 16, 2008 at 3:42 am #24230marionsModerator
Hi Tess….you had plenty of great responses but I also wanted to welcome you. As Jeff had pointed out already your Dad’s pain can be managed. He may experience numerous side effects such as sleepyness, constipation, etc. however, this can be worked with, also. I don’t know whether you have read up on stool softeners but, that seems to be another important issue especially when pain med’s are given. You a wonderful advocate for your Dad and you are coming through for him when needed most.November 16, 2008 at 12:19 am #24229jeffgMember
Hi Tess, Sorry to hear your Dad is in so much pain. Has he had a MRI lately? I’ve been fighting pain for a while and founds out it had got in to my spine and caused vertabral fractures. I will be having a Vertiplasty/Kyphoplasty Tuesday to hopefully relieve the pain. My situation is inoperable as well, but when it comes to pain management you really got to insist on x-rays to determine fluid in lung cavity, CT to determine soft tissuse tumors that could be apply pressure to your spinal roots, and MRI to determine vertabral fractures or involvement. Also make so your refered to the pain Management clinic of what ever hospital your at. They are more experienced with pain management than the every day oncologist I’m afraid to say. Yes the tumor it’s self can be causing the the pain depending on it’s location and size. But the got to check for mets. Even if your going to recieve only pallative treatment, they need to deal with the pain until comfortable. It can be done. Personally it sounds like fluid build up or possible mets in the vertbrals or ribs. They can controll the pain. advocate for it loud and clear. I’m on 300MGs Morphine and 50MG fentnyal patch daily with 8 mgs hydromorphone for break through pain. When it gets in the bones it can get pretty bad and you have to keep a constant level of pain meds and have anti nausea meds on stand by. Wish you Dad the best possible but if you don’t get the pain under control ,it’ll wear him out. Yes , even with a large support group it is so lonley deep inside.
God Bless You Both!
JeffNovember 16, 2008 at 12:15 am #24228
Thank you for your kind words & my thoughts are with you too. My Dad is 63 and in good health, diagnosis came less than 2 weeks ago. Everything has happened very quickly. We’ve sent his materials (CD-imagery & doctor notes) to established contacts as Sloan-Kettering, Fox-Chase Cancer Center, NIH Cancer Institute, Duke Comprehensive Cancer Institute, and Roswell Park Cancer Institute. 80% of the surgeons/oncologists responded & noted that chemo was the best option and that they canNovember 16, 2008 at 12:14 am #24227lisaParticipant
My tumor shrunk 50% from radiation & chemotherapy. I am now free of stents. I’ve been on chemo for 15 months (Gemzar/Xeloda). I don’t think that it’s helping shrink the tumor anymore, but I believe that chemo is keeping it from spreading.November 16, 2008 at 12:10 am #24226gavinModerator
Welcome to the site, but I’m sorry that you have to be posting here. There is an amazing amount of knowledge and information on this site that has been extremely helpful to me. The support offered to me by people here has also been extremely helpful to me and hopefully you will find the same.
Your dad seems to be in a similar situation to my dad. He was diagnosed in the late summer of this year with CC. He was also told that it could not be rescected as it was in an area too close to major blood vessels. My dad was also very jaundiced for a few weeks or so before he was wadmitted to hospital, he also at the time suffered from serious itching. Once my dad was admitted to hospital and eventually diagnosed, he had a metal stent inserted to help the bile flow and had a biliary drain in for quite a few days to help drain away the bile. Dad also got the shakes for the first time in the hsopital. I started a thread about this, use the search function here and type my name in if you want to read about it. He had the shakes for a while when he came home, they usually lasted for about 10 minutes or so then they would stop. The docs do not seem to know why my dad got the shakes, but they just seem to happen and then they stop.
I don’t know if the pain your dad is feeling is down to the tumor or the tubing. I know my dad felt some discomfort once his stent was put in and it was hard for him to sleep on his right side. The stent did seem to help his jaundice though and the itching that came with that. As I said earlier, my dad’s tumor was too advanced for surgery and he underwent Photo Dynamic Therapy, would this be a possibilty for your dad? Are you based in the UK? My dad has not had chemo so I can’t comment that but I’m sure others will be along soon to talk about their experiences.
I wish I could tell you how this will unfold for your dad, but I can’t. I don’t know how it will play out for my dad either so all I can do is tell you about his experiences and how it has gone so far for him.
I wish you, your dad and all your family the very best.
GavinNovember 15, 2008 at 11:47 pm #24225carol58Participant
Hi Tess, I’m sorry you have to be here for this, but glad you found us. Can I ask how old your Dad is? This is our experience only. Charlie (age 53) had 14 weeks of gemcitabine last summer after being diagnosed in May 07. At first, it seemed to help. He started feeling better, eating better. But after about the 7th week, it went downhill and he just felt worse and worse. At the end, the tumors had not changed at all. He was on a rough regimen of it. 7 weeks every week, 1 week off, then 7 more. Since then, we’ve heard more of 1 week Gemzar, 2 weeks off or something like that. Another doctor told us that was a very rough schedule and should have been taken slower. Anyway, it wasn’t successful with Charlie, but many people on here have had good success with it. It’s so hard to tell. Everyone reacts so differently to the drugs. In hindsight, my thinking is (if i had known) as soon as Charlie started feeling bad, we should have stopped it or had longer intervals between infusions. Your Dad might perk up like Charlie did at the first and feel better, but if he starts feeling worse after a few weeks, you can always stop it or change it. I hope this isn’t too confusing. Hoping for the best for your Dad.
CarolNovember 15, 2008 at 10:53 pm #24224lainyParticipant
Dear Tess, Welcome to the the best little club in the world that no one wishes to join! The only thing you can count on with CC is that it is totally different for almost everyone! Teddy has had many tubes and they are uncomfortable on a good day let alone when your body is fighting cancer. How old is your father? Teddy is now 76 and we have decided when the time comes no chemo, but that is our decision. He opted for radiation and cyber knife. We usually recommend a second opinion altho it may help to know where your dad is being treated. I know for sure you will get some good suggestions here and you will need to hang in and be really strong. Since Teddy has not had chemo I will bow to those more experienced in that field. We are here for you to chat or vent to ease your way through this nightmare journey!November 15, 2008 at 10:24 pm #1730
Thanks to all for sharing your stories. I can’t believe that CC is still regarded as ‘rare’, when it has touched so many lives. My Dad was just diagnosed less than 2 weeks ago with intrahepatic CC & it has hit him very hard. He had stomach pain for several weeks & turned very jaundice in just a week prior to diagnosis. He’s lost ~30lbs. & can’t eat much. They put a tube inside, to re-direct the bile, but it is causing him a great deal of pain and discomfort. He gets the shakes at times and the pain is near the tubing and in his back. Could the pain be the tumor? He can’t sleep, it hurts him to lay down. The tumor is advanced, not a candidate for resection (too large & proximity to major vessel), they say they can’t radiate & chemo is the only option (he’s due to start Gemcitabine next week).
It is so hard to watch my Dad hurt like this. Can anyone tell me, I need to know, how we might expect this to unfold – based on your experiences. He is very weak and we wonder if the chemo, which the doc says the cancer is resistant to, is worth it. Will the pain continue to get worse, will Dad eventually not eat anymore? Please drop me a note if you have any experience with these symptoms, your insights are certainly appreciated.
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