newly diagnosed with cc
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Vincente….I would try to get in touch with Dr. El Khoeuri on Tuesday. Hoping for your Mom to be feeling much better by then.
Barb….sorry for all the problems you are having. Have you responded to the antibiotics for the infection?
Hugs
Marionvincent, sorry about your mom. when i suffered from mouth sores i was prescribed Daniel’s Solution. it is “compounded” by a pharmacist and is therefore not available at some pharmacies. i got mine through Norris. it worked great. i also use Biotene mouthwash.
good luck to you.
i’ve been hiding away as our youngest grandson (7 years old) has been living with us since december. he is 100% disrespectful, been in the principal’s office more than once….so much more to tell….
. add in a few health problems of my own….central line infection and now battling blood clots in my arm………..take care…you are a wonderful son. your mom is so fortunate to have you caring for her.
with love,
barb hHello,
Yeah he has been notified but he wont have office hour until Tue. I spoke to his fellowship doctor and she told me that the doctor at current hospital should be able to prescribe her lidocaine for the mouth sore/mucositis and make sure she gets enough pain med after discharged until mom sees Dr. El khoeuri again. Mom is stable now although still in ICU ‘cuz they want to monitor her heart.vincent…. I would assume that Dr. El Khoeuri has been notified about your Mom’s condition and has been informed about your Mom’s mouth sores and the other symptoms she is experiencing. From what I have learned, these can be related to the Oxyplatin. You also want to make sure that he is aware of everything your Mom is taking. Please, stay in touch. Possibly, someone else may have some suggestions for you also.
Good wishes coming your way,
MarionHello,
Mom is currently at Greater El Monte hospital that is about 5 mins of drive from the house. She had a hard time breathing last nite so we ended up calling the ambulance. She’s stable now. Her potassium level was 5.9 so they gave her the kayaxelate to remove her potassium. She was also dehydrated (which possibly cause her serum creatinine to be at 2.2) so they gave her some IV. She also had severe back pain so they gave her some morphine.
This is the 6th day since her second chemo cycle. She seems to have a hard time this time. Her back pain is moderate/severe, very fatique, and she started to have oral infection (mucositis) for about 2 days. Any advice or recommendation of what we should do? Thanks!!Hello Larry….I would like to follow Lainy and Jeff in welcoming you. Stage II and the possibility of radiation sound very promising therefore, I would not put too much value in the information from the internet in re: to life expectancy. It is your cancer although, categorized as Cholangiocarcinoma it is unique to your body and to the way your body responds to varied treatment options. I am looking forward to hearing from you after your upcoming visit with the oncologist on Monday.
Tons of good wishes coming your way,
MarionLarry you have a great attitude and that is the other half of the battle! Good luck and please keep us posted as we will be thinking about you.
To Lainy and JeffG, My tumor is in the left bile duct, guess they couldn’t see it good enough or was too close to the liver to get it. I’m sure I’m getting along better than some do with chemo, I usually get kind of tired and weak the afternoon after I have the treatment and the next day wake up with a headache but that goes away real soon, I haven’t lost my hair altho it’s been getting thinner but I noticed that a few years ago, goes with age I guess. As far as food I seem to have a good appetite. I was in Mayo 3 times for a total of 18 days, that was when I lost my taste. But I have it back and that makes me feel good. The Doctors at Mayo told my son that I have stage II bile duct cancer, well that’s a heck of alot better than stage IV. Guess I’ll know more on how things are going next Monday when I see the oncologist, hopefully hear that it hasn’t spread. But like I tell people, life is kind of like a poker game, you have to play the cards your dealt. I haven’t had any jauntice since leaving Mayo and my bilirubin count it real low compared to what it was last Aug. and Sept. My blood tests are good, so that’s half the battle. Thanks for your concern and God Bless…Larry
Hello Swarty1,……. Sorrry to here of your situation. Dr. Nargorney was my surgeon, well it will be 10 years this coming March. They took my gallbladder and half of my liver. It has come back and mets everywhere after rounds and rounds of chemo and external radiation. I currently on at home hospice. So, I guess my situation was a little different, but a time time of demise depends on you, what type treatment you have had, actual location of tumor to start with and how you responded to treatments. If your Bile is kept flowing makes a difference of how long you have as well. A lot of variables. Keeping faith and hope is what works best for me. I actually believe I see a little juandice today. Feel free to use the custom goggle search at top of these post to review many specifics particular to this site and it’s members and what has been tried. Many individuals have well surpassed there original Dx of how long. Feel free to ask any questions, I’m sure other members with similiar DX will be willing to share their experiences. Anti-oxidants and high protien has always be good in my book.
God Bless,
Jeff G.Hi Larry and welcome to the best little club in the world that no one wishes to join. My husband also had the cancer in the biles duct when we were visiting our children in Milwaukee. We really lucked out with Dr. Lyle Henry at Columbia.
Where was your tumor in the bile duct and why could they not get to it. Teddy’s was in the bile duct valve and he had a successful Whipple. That was 3 1/2 years ago. He is 76 now. The cancer came back last April where his duodenum used to be but we just got it out with cyber knife. Can you tell us a little more about why they couldn’t get to it?Hello everyone, I’m Larry from Wisconsin, I was diagnosed with bile duct cancer the last of July 2008. Doctors in Madison did an ERCP and PTC found out I had cancer doing brushings during the ERCP. Was told it was inoperable. They put in a plastic stent. My kids wanted a second opinion and got me into Mayo Clinic in Rochester, Mn. Dr, G, Gores and Dr, Nagorny said they could operate, well bottom line was they did and just took out my gallbladder, said they couldn’t get the tumor in the bile duct. they did biopsies on my liver, lymph nodes and said it hadn’t spread as yet. Had 3 drains put in my abdomin and replaced the plastic stent with 2 metal ones. I returned home and finally went back to have the drains removed. I started chemo [Gemzar] the 1st of Dec. every Monday for 3 Mondays then a week off. I just finished my 9th treatment yesterday [Feb. 9th] Have a Ct scan scheduled for this Thursday and will see my oncologist on the 16th. She mentioned radiation treatments at our last meeting. I’ve read on the internet that a person with bile duct cancer has from 7 to 12 months to live. I sure hope it’s longer. I’ve been eating high antioxidant foods, like blueberries and red grapes. as I’ve heard that they are good for fighting cancer. My heart Dr. told me to eat foods high in protein and calories while going through these treatments. Oh, I’m 70 y/o and I had lost about 45 lbs [from 220 to about175]but have gained back maybe 3 or 4 lbs so far. The chemo and radiation will not cure this cancer but hopefully will give me a few more months of quality life. My son and daughter have been so supportive and helpful, I thank God for them every day. All the best to everyone with this dreaded disease and God Bless each and everyone of you
Thanks Tess,
so today I took mom to USC again to get her 2nd chemo cycle. Mom had blood drawn again and lab came back with her Scr of 1.8 and blood of 7.4 so they had to give mom 2 units of blood. Other labs looked fine. Dr. El Khoeuri said that she looked good and believed that after blood transfusion, her kidney should get better. He said that it’s encouraging with the look on mom’s face because she looked stronger/healthier than she was before. He would do a scan after the 4th cycle ‘cuz at this point, it’s hard to tell if she’s responsive to chemo or not. I told him about the breast milk but he doesn’t believe in that and therefore wouldn’t write a prescription. I really want mom to try the breast milk though ‘cuz even if it doesn’t work, it wouldnt hurt either except we just have to pay for the milk.Hi Vincent, here are a few links for you to explore more on those treating cancer with mother nature’s liquid gold, along with a link to a couple CA milk banks. The milk is primarily intended for premature infants and the supply is limited, but according to the article, milk has been obtained for the cancer patient with a doctor’s prescription.
2. http://thelactivist.blogspot.com/2007/05/breast-milk-as-cancer-treatment.html
Milkin’ Mamas
600 Pacific Coast Hwy. #200
Seal Beach, CA 90740
(562) 598-MAMA / (562) 598-6262
http://www.milkinmamas.com/Contact-us/Mother’s Milk Bank
751 S Bascom Avenue,
San Jose, CA 95128
(408) 998-4550Best,
TessHello,
I wonder if anybody heard about human’s milk can treat cancer? I just heard that from a friend and her mom had nasal cancer. She doesnt know if it’s really helping or not but she’s on-watched right now. Her mom was treated with chemo but it wasn’t responsive so the doctor had to max out the dose. At the same time, she heard about human’s breast milk so she was giving her mom that every day (3 oz). After 6 months of treatment and concurrently taking human’s breast milk, her mom is now on the 6th month of chemo-free and on watched. Doctor said that it was suppressed.
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