11 months in and just found this site
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Hi,Monkeytet,
I had liver resection for 8hrs in 2009,everything was fine,out of the hospital in five days. I lost about 20-25 lbs. and regained 30lbs later(in about 4-6months period).
Always consult your doctors first; the following suggestions are for information purpose only.
1. give your father Carnation breakfast drink (200-300cal/can)1 can in the morning in addition to what you have done for his calorie intake.
2.Give another can of Ensure or similar protein drinks in high calories(360 cal/can) any flavor. any time in the afternoon;between lunch and dinner time.
3. encourage him to eat vegetables and fruits ,banana(high potassium);blue berry and the like(high antioxidant) orange and pears (4-6servings/day) ;in addition to the regular meals.
4.Ask your doctor to change Reglan and prescribe something else)- it is drug that increase the motility of the upper GI tract ,therefore diarrhea is a common side effect;Reglan is also an older medication that prescribed for treating nausea/vomiting due to its anti-dopamine effects to block the stimulation of dopamine.Therefore drowsiness and fatigue are also common but less so.
Older anti-nausea/vomiting drugs included
1. Group 1(antidopaminergics).- prochloperazine;promethazine ,reglan.
2. Group 2 like cyclizine, meclizine,dimenhydrinate, benadryl,scopolamine and tigan are belong to anticholinergics group.
3.Group 3 like corticosteroids (dexametason),cannabinoids and hydroxyzine are belongs to the miscellaneous group.
Try to ask your doctor to switch to another group of med if the one your father took is not working or try a combination from different groups.
or use newer ones like the following;
New antiemetics such as the
1. 5-HT3 receptor antagonist group- ondansertron (Zofran), dolasetron(Anzemet), granisertron (Kytril)and palonosetron(Aloxi) and
2. the NK1 receptor antagonist like aprepitant (Emend) and others are on the market ;they come as an oral capsule or tablet.Emend has to be taken with other antiemetics and on schedule for the maximum anti -nausea/vomiting.
On one of the ASCO 6/2011 poster session abstract#9091,indicated
“significant clinical benefits in favor of palonosetron were also seen in the delayed and overall time periods on the number of emetics episodes and the severity of nausea.”when compare to the other 3 5-HT3 receptor antagonists.5. if the lab work was done in a hospital,ask your father for permission tolet you get all the copies,including MRI,PET and CT scan and pathology and surgical reports for surgery.(It will be of great value in the future).
A final note,don’t be afraid , but be strong;your father needs you to be calm and confident to help him.From my experience,everything will be fine. I was and I am still a patient of CC. I learn one thing from having this disease;there is really nothing I can do except praying and keeping on learning about this disease.
God luck and God bless you.
BTY,how old is your father?My dad had the whipple done almost 6 weeks ago for CC and seems to me to be eating less that he was when he first got home and is sleeping more. He says he is nauseous and it is hard to swallow, but he has lost at least 30 lbs since this started 2 months ago. He wasn’t a big man to start with. I am really scared for him. He insists he is having no depression and I’m sure it’s hard to be this sick for such an extended period of time. I was hoping someone who’d had the whipple could tell me what to expect. The surgeon has never even weighed him, so except that his skin is falling off of his bones, they won’t know how much. He was taking regalin, but he had so much diarriah, I told him to quit taking it. He was worse before he stopped that. Any ideas? Since we came home from the hospital, he has had no blood work or anything. Is this common? They did put a drain back in a couple of weeks ago because of some leakage, but that is out now. Any information or advice would be greatly appreciated.
Hello skb! My sister had similar findings as your husband. She had a whipple with what the surgeon thought were good results that he to did not often get to give. She had clean margins everywhere but a questionable one in the liver also two nodes positive. she had radiation with 5fu and gemzar chemo. Her ct scans were every three months whipple in nov of 09 and cc returned in feb of 2011! She is now under going gem/cis chemo. Good Luck!
JackieHello skb….I would like to follow the others and welcome you to our site. The higher incidence of CC in Asia has bee attributed to the Endemic parasitic infection rampant in that particular area of the world. Israel also has a high occurrence of this cancer as does the UK due to the large Asian community residing there. There are numerous risk factors associated with this disease mainly, primary scelorising colongitis. Several of our members also are VA vets. You may read up on previous threads by entering “vet” into our google search function. It is great to hear that your husband is doing well with the recovery from the whipple surgery. The additional normal tumor markers all must make you feel much at ease. Good luck on the upcoming scan and stay positive.
All my best wishes,
MarionHello SKB and welcome to our wonderful family. The good news is that your husband came throu the Whipple with flying colors. Now the game is to try to be realistically optimistic. No 2 people are alike with CC and like Jim said, the VA is really not equipped for this. My husband was in Korea. He had a Whipple almost 6 years ago and passed on Dec 6th. It had returned 3 years later where his duodenum used to be and they knocked it out with Cyber Knife but then it returned again 2 years later. I do have one suggestion, instead of driving like you are going to the gallows, drive and hold hands like you are going to a PROM! Much better results. Yes, protocol seems to be 3 month check ups. We do not believe in numbers and statistics on our CC site. We have Bob who had a Whipple 14 years ago. Of course we try tp prove all the numbers wrong! I am so glad you found us and please keep us posted, you are now family.
For reasons I don’t fully understand, CC is much more common in Asia. Only about 30% of cases diagnosed are surgical candidates, and not all surgeries are successful. My onc asked me if I’d spent any time in Asia. I had surgery 4/8/09 and began chemo ~ 6/1. CA19-9 were up over 200 for me and came down fairly consistently and finally settled out < 20. That test is subject to a fair amount of somewhat random variability, so the trend over time is more important than any single result. Be glad the VA didn’t do the surgery. There are relatively few places to have this kind of surgery done, because cc is pretty rare (~2000 new cases per yr in the US). Best of luck going into the future.
She seems to have some. She tried to get him into a study but 2 things prevented that from happening.
1. His healing time from the whipple
2. The VA wouldn’t approve the treatment through the Fee basis.
Yes, the positive lymph nodes were removed and all margins were clear. The surgeon only does hepatic and pancreatic surgery. His comments were that he didn’t often get to give good news but he felt this was good news but cautioned us that the Bile duct runs through the liver and they couldn’t remove that. His ca19-9 is now 40. It was high prior to the surgery. There is no evidence currently of further spread.
I am still wondering how many vietnam vets have had this as I have found some mention in my research regarding exposure to dioxin as well as liver flukes in SE Asia.
It seems most die before they would be able to pursue help from the VA.Welcome to this site and sorry you had to find it. I likewise found this site well after surgery (I had a resection done 4/09 aT NY Presbyterian). Quarterly CT’s are usually ordered for the 1st yr or two. CC has a tendency to recur but I’m not sure what the ONC is basing her prediction on. Does she have lots of CC experience, BC most don’t. Were the positive lymph nodes removed? Was there any spread elsewhere?
The nature of this disease has us all looking over our shoulders, unfortunately.
Hopefully, the chemo will knock down any residual bad cells. Good luck and try to stay positive.
I can’t believe I just found this site. My husband was dx with extrahepatic cholangiocarcinoma 11 months ago. I did every search you can imagine and never saw this site. The only thing the Doctors gave us was the Pancreatic support sites. But now I am here and will get started.
My husband has been a very healthy man throughout his life. He did smoke and drink but quit smoking nearly 18 year ago and drinking 21 years ago. The drinking was selfmedicating for PTSD. Last winter he seemed to be aging before my eyes and had no energy. Things came to a head in June. Urine turned dark, stools light, no appetite and itching. I had thought his sclera was a little yellow but they never seemed very white so didn’t really get concerned until he mentioned itching. By the way, I am a nurse.
I called his primariy care at the VA on Monday June 14th and they instructed us to go to the ER. Well 10 hours later we were told he had a tumor and they were going to do a CT scan that night. The next morning we were told he had pancreatic ca and that a referral had been placed to see the GI doctor. On Thursday they did the first ERCP and obtained brushings. The next day they did another ERCP with needle biopsys and placed a stent. We were told they couldnt definitly say it was cancer but their experience told them it was and a request was sent to the chief of staff for a fee basis surgical referral since the VA did not have anyone qualified to do the surgery. Over the next 24 hours, all his jaundice and symtoms went away with the stint in place.
The oncologist told us he had 6 to 12 months and really got things moving. . We saw the Dr. DelCore at KU and he did a whipple on July 27th. The CA was in the pancreas but all margins were clear and only 2 out of 10 lymph nodes were positive. He has followed up with 1 cycle of Gencitibine, 28 radiation tx with 5FU and then 3 more cycles of Gencitibine. He had his last Chemo last week with a followup scan. We are now awaiting results of that scan. Oncologist says they will followup every 2-3 months and she would expect it back in 2 years.
This year has been difficult. I remember in June and July, every time we were driving to the Dr. or hospital, we would hold hands and say we felt we were driving to the gallows. I am hoping that now his tx’s are over he will get to feeling better and we can do some things to enjoy our life together.
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