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La fundación de colangiocarcinoma (CCF) ahora ofrece servicios de traducción en Español. Por favor publique sus preguntas en Español y un intérprete le va responder.
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Thank a lot ) hope that everyone here to feel better and keep moving and be strong
Hi all my dad is going to be discharged from the hospital tomorrow morning he had folfox his bilirubin was 3.9 after his 1st cycle it dropped down to 2.5 he is less jaundice and looking better this is a wonderful news for us I'm so happy and keep going strong till the 2nd cycle the 28th march the onc is optimistic with the result and he thinks that its a good sign
Thanks a lot for your support Marions,Lainy and PCL1029 thanks for all the information I can get on the site you are wonderful people and I wish you all to heal from the disease we should be everytime positive and hope we will make it through by the way is there any medication that can higher the blood pressure so that he can have a higher dose of lasix and aldactone to treat the ascites
hi all my dad has been in the hospital since last thursday he had fofox and went well didnt feel any side effect BUT THE PROBLEM IS THE ASCITES IN THE LOWER ABDOMEN HE WAS ON LASIX AND ALDACTONE AT HOME THEN DIDNT HAD ANY MEDCATION FOR WATER RETENTION WHILE IN THE HOSPITAL BECAUSE IT WAS LOWERING HIS BLOOD PRESSURE YESTERDAY THE DOC DECIDED TO GIVE MHIM AGAIN JUST LASIX 30MG PER DAY BUT THE BLOOD PRESSURE IS TODAY 90/60 IS IT LOW? DANGEROUS? AND HE HAS METS TO THE LUNG SMALL METS I WISH THAT THE FOLFOX WILL HELP HIM TO SHRINK THE LIVER TUMORS SINCE THE METS IN THE LUNG ARE SMALL AND THE ONC IS NOT VERY WORRIED ABOUT THE LUNG METS SINCE IT WONT KILL HIM SO OUR MAIN FOCUS IS NOW TO SHRINK THE TUMORS IN THE LIVER AND KEEP THE BLOOD PRESSURE AS HIGH AS POSSIBLE AND RELIEF THE ASCITES IN THE LOWER OF THE ABDOMEN HAS ANYONE BEEN THROUGH THIS HORRIBLE SITUTAUON I FFEL SO SAD AND DOWN AND STILL FIGHTING TO TAKE OVER THAT DISEASE MY DAD IS A VERY STRONG MAN THAT NEVER GIVE UP HE IS STILL POSITIVE THAT HE WILL MAKE IT THROUGH HOPEFULLY MY PRAYERS FOR YOU ALL AND BEST WISHES,I BELEIVE THAT THE POSITIVE TOUGHTS ARE VERY IMPORTANT IN THIS SITUATION
Hi all I took my dad last Thursday to the hospital he was jaundice itching and barely walking and so weak the bile duct is not obstructed as we thought its the cancer that has metastasis to the left lobe, he had a resection 2 years a go all the right lobe removed but the surgeon couldn't have clear margins in brief , when I took him to the hospital I tought it was the end coz he was so weak and couldn't even walk but after 3 days of hospital he is now waking in the walkway of the hospital and having power again they gave him vitamins by iv and magnesium and calcium the make him stronger he is eating again now thanks god they started the folfox yesterday coz the onc saw him better they infused the oxaliplatin and folinic acid for 2 hours then the 5fu for 40 hours infusion by iv I saw him today he isn't having any side effect all seems to be going smoothly he still have till tomorrow 2 pm till the 5fu is done then he will have the same regimen in 17 days I would Like to ask you if someone has tried this regimen and what is the response? How long do we need. To wait to know if the chemo is shrinking the tumors can we do a blood test after the first cycle is done directly to know if the chemo is working??
I hope so I will ask if we have the cream here is there any thing I can give him to be stronger he is so weak that he can barely walk
Lainy yes I think the tumor is in its way that why they can't stent it
The MRI show that a tumor is effacing the common bile duct the onc told me today that its mean the tumor is pressing on the common bile duct and that is what is causing jaundice and itching not a need for decompression of the bile duct but the position of the tumor is bad have anyone have this case ? He transferred us to a surgical oncologist tomorrow to know if something can be done with that tumor pressing on the bile duct maybe a surgery ?? I'm really confused have anyone been in this case ? A stent is not possible coz of the tumor being on the common bile duct that sound weird a bit I'm sure there is a solution for that with a surgical procedure it cannot be left like that any suggestion would be kind of you all . Hope for you all the best
Dear Lainy, the onc told me that he is too weak to have chemo ( and that the cancer have spread all over the liver that have been resected but the bile ducts are obstructed so there is no need to place a stent, concerning the cyber knife we don't have it Lebanon but I would be ready to travel anywhere if they have treatment for him I'm so sad I don't understand how he can be jaundice without bile obstruction is that mean the liver is shutting down?
Hi I received the MRI and the blood test of my dad he is jaundice and itching and not eating anymore just a little he has ascite we thought he had bile obstruction and he could have a stent placed but the MRI showed no bile obstruction so no stent is going to be placed as his dr said no more treatment for him:( here is the MRI report is saying : intraheparic lesion the largest being at the periphery of segment vii measuring 8.9cm in segment iv 6.8cm and segment the largest of 5,4*3,9 effacing the bile duct that measures 1cm diameter in its extra hepatic segment interval appearance of a splenomegaly with a spleen measuring 17.2cm in span.. He was told that no more treatment for him I confused his ca19-9 is 220 and he is very weak barely can walk is there anything I can do to help him maybe some vitamins ? Or could he have chemotherapy in his case coz he is very weak at least I want to treat his symtoms any help will be very kind of you
Thank you all for your support I feel that he is going to be ok I'm still positive and will keep posting updates when I get the MRI result and the stent done
Hi,my dad is yellow and itching and having ascites we met today a new md today Eddie abdalla at md Anderson he is a surgical oncologist does anyone know him or treated him? He asked us to do a new MRI tomorrow and then to have a stent placed to relieve to jaundice and itching my dad is having then he will see him again to see which treatment is ok for him , has anyone done a stent and what after can we continue to have chemotherapy and radiation is it possible to overcome the weakness my dad is feeling after the stunt and continue chemo or is that mean the end is near? I'm worry I would like to know if someone has been thru stenting when is really weak and jaundice and has ascites can he overcome and go back for the battle hope to hear from u all . God bless
Marions the doctor said should wait 3-4 days for the water to go out a bit then go and do the mri
Hi we met the oncologist today and I asked him about the problem of water retention he said that it is from the liver enzyme are all high his gamma gt is 700!! and all the rest of the liver is with multiple tumors there is no blockage in the bile duct but the tumor had invaded all the liver and he wasn't very positive about his prognosis he had been on xeloda and still the disease is progressing and gemzar too he thought about a new regimen to try folforinox but he thinks that he is too weak as it is a hard regimen and if giving him a after chemo he thinks that it would be without result he is asking a new MRI to see if there is a part of the liver not affected to see if he can do a chemoembolization as for the water retention he is taking lasix and seems to help him a little bit... Hope he can over come this situation if someone has been through this please help
Hi patti77 and Marions we met the oncologist today and I asked him about the problem of water retention he said that it is from the liver enzyme are all high his gamma gt is 700!! and all the rest of the liver is with multiple tumors there is no blockage in the bile duct but the tumor had invaded all the liver and he wasn't very positive about his prognosis he had been on xeloda and still the disease is progressing and gemzar too he thought about a new regimen to try folforinox but he thinks that he is too weak as it is a hard regimen and if giving him a after chemo he thinks that it would be without result he is asking a new MRI to see if there is a part of the liver not affected to see if he can do a chemoembolization as for the water retention he is taking lasix and seems to help him a little bit... Hope he can over come this situation if someone has been through this please help
In this situation is it better to see the onc or the surgeon?
Did anyone passed this expirence of ascites with success and continues treatment or it just mean the end is near:(
Hi all, my dad is having fluid retention caused by high enzymes of the liver the gamma gt is 700 and the treating dr told him to take a capsule of lasix and aldacton 25mg daily for 2-3 days maybe it could reduce the water retention otherwise he have to go to hospital to take the water from his abdomen and lungs he is having dark urine,he is exhausted I hope he will be ok have his energy back but I'm so worry about him has anyone passed through water retention and what then? He hadn't been on chemo since 6months cause he was clear but now the scan is showing that the tumors has spread in all the liver god bless any thoughts will help me get through that horrible disease
Have anyone tried this therapy?
Hi, my dad was diagnosed with intrahepatic cc last year in march and had a total left lobectomy then after just six month he had a reccurence while he was on gemzar then the onc decided to change the regimen and told him to take xeloda but the progression of the sickness is still going but my dad is feeling ok he is in good shape the onc said to change again the regimen to folfox4 since 3 month ago but he wasn't very positive about the prognosis so he stopped chemotherapy and switch to alternative medicine ( another onc told me that he don't need to take the chemotherapy since the prognosis is poor let him live in peace he just have around 3 months to live!!) but I didn't told him that it was since 4 months from now and he is feeling very good he is a alkaline diet and we met a doctor who is a family friend he is working on the energy of the body he believe that he could take out the disease of his body but he said its need some time until today my dad is ok but today he decided to have a blood test to check his liver functions he had the gamma gt elevated to high to 265!! and we are waiting for the ca19-9 result for tomorrow I'm really worry about him coz the onc said he had just 3 month to live and he is still here with us and feeling ok no symptoms and a good appetite you couldn't even imagine he is sick does the gamma gt. elevated mean a bad sign I believe if he would be on chemotherapy his health would have deteriorated but he is still good
Thanks for your support I will make a appointment today with a onc radiologist,and post soon again hoping for good news
Hi all,I'm do depressed coz the onc told me that the reccurence of my da is bad there is many spots on the liver after just one year after resection and that his prognosis is poor he could have 3-4months to live:((( and a new surgery is not possible,the onc said that he should start on folforinox regimen but heard that is hard chemo combination,I'm afraid coz when I see him he is looking good and not loosing any weight and have good energy he doesn't look tired so I was thinking that maybe the chemo will make him very weak and the outcome is poor prognosis even with chemo so why to make him feel bad from chemo since he is ok now, we decided to switch to a alkaline diet to boost the immune system maybe he can fight the disease naturally can anyone help with the decision since the chemo doesn't heal for what does he need more pain and frustration I think that it would be more peaceful to live as nothing happened and keep it for the faith of god, please help me for a better desicion ,waiting all your thoughts thx
Hi please can anyone tell me if you have been on folfirinox therapy and what is the outcome does my dad have hope with that?
Hi my dad had his scan done and shows that the lesion on the liver have progressed in size and are now from 5 to 30mm and the is one nodule I the lung looking suspect as as secondary,tomorrow we are going to show the result to his onc, but I'm scared I showed it to the surgeon and he told me that it's bad news that my dad have up to 3 month to live ,I'm so devastated to listen that I didn't tell him anything not to make him sad but I can't see my dad going this way with this horrible disease, actually now he is ok he has good appetite no jaundice nothing at all!!!!! This is making me crazy how can he die in 3 months but now he is ok he go out to walk everyday sometimes he is out for swimming and there is no symptoms of the disease , please helppppp
Posts found: 1 to 25 of 51
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