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My son had the same issues. His weight loss was drastic and quick. He tried all of the natural path and pharmaceutical options but nothing worked and he continued losing. We live in Ca. and a friend brought over a vaporizer with marijuana. Within 10 minutes he wasn’t just eating he was enjoying the food and holding it down. Absolutely amazing. There is a pill form that the MD can prescribe. It does not work as quickly or as well but it is available. His Naturopath Doctor said the real thing, as long as grown organically, has numerous benefits beyond nausea control. In my sons case I do believe it truly is medicine as he has not only been able to conquer the nausea but has also gained some weight back. He uses such a small amount at a time you would not know if he didn’t tell you. I hope this helps, just another option.
Hi Kristin, I join everyone else in how sorry I am about what you and your family are going through. I know when my son was first diagnosed his breathing was particularly worrisome to me also. It turned out to be painful for his lung to inflate and push on his swollen liver. This may be the same for your Dad. After a couple of chemos and with the right pain management that did go away. It would be nice if someone had a list of what to expect but no one does. Best of wishes to you, your Father and Family.
I had to smile and laugh, thank you so much! You’re right it only causes stress and worry! And apparently from all the ranges of numbers here it really is not a sign of things worsening. I feel so much better! The fear just gets ahold sometimes and I can’t shake it.
Thank you everyone and I will let you know what Dr. Kato’s response is when it arrives.
Thank you ALL so much! Very informative and very much appreciated. I feel I should stop just reading and researching in the “shadows” and contributing. Everyone’s contributions have helped me/my family so much possible we can help someone else. Without this extrodinairy board I would have been lost!
Dear Lainy, I do not know how or where to post a new topic and I’m hoping you will help me.
I have been reading the prior posts regarding liver flukes. We also brought this up to my sons Onc who said he was quite aware of them and this was not the case in my sons diagnosis. He did brush the idea off.
Both of my sons have traveled extensively through Asia, Thailand, etc. They have also spent a lot of time backpacking throughout South America. They eat with and like the locals. My 30 year old, health conscious, gym rat, anti drug son is so extensively covered in tumors chemo is our only option. That’s not what I’m writing about though. It appears all our Western Doctors brush off liver flukes. Is it possible on this site to start a page where people can say if they possibly could have been exposed? And how.
Where would that information go after being compiled? Also does anyone know how to test for this cancer before there are symptoms? My youngest son lived in India for six months while studying and is even more adventure oriented then my oldest who has this horrid disease. I am literarily in tears writing this with fear of losing both my children.
I’m so sorry to hear about all you are going through with your mil and in-laws in general. I think some may be just due to different personality types. I found its been better for my family if I wait for them to ask about the different aspects of my sons disease then I tell them the harsh truths and finish with how we are fighting. My son, who is 30, is not a candidate for surgery, according to three highly regarded surgeons.
We arrived at the Cancer Treatment Centers of America in Phoenix with him in a wheelchair and very very ill. He is now lifting light weights, working on an old truck, and engaged in his life. A lot is due to his youth, physical therapy, etc. but the biggest turn around was when we stopped the weight loss with a medical marijuana vaporizer. He is on the same regimen of chemo as your mil, we tried everything and finally a friend brought a vaporizer over and begged him to try it.
It works. There truly is a valid use for medical marijuana. As you are in California also please attempt to have your in laws avail themselves to this. As my son put on weight he became stronger and a cycle of healing started. We do not know what the future holds but we are all enjoying every moment together and he is eating full meals with the family! His tumors are shrinking but the Onc has stated when he stops chemo they will return. We will see. It’s a horrible heartbreaking disease. He is also taking methadone for pain and has been able to cut it back to a third of what it was. When we arrived his Ca-19 was 110,000 it is now 1030. That was June 1 of this year.
I apologize. I was just re-reading my response and saw a letter exchanged. It should read SHOT GLASS…..SHOT GLASS! I hadn’t even noticed how close those letters are to each other on the keyboard. Sorry
Our Naturopath suggested my son try Prairie Shots and they have worked really great. He hated the taste of prune juice but needed the “help”. You use a shot glass fill with half prune juice and half black cherry juice. Warm for a few seconds in microwave and drink it. My son does one to three a day and it helps with everything it should. It’s also really easy to get a man to use a shit glass! Good Luck and hope this helps!September 3, 2012 at 4:40 am in reply to: Minimally invasive approaches to extrapancreatic cholangiocarcinoma. #63888
Wow, I did not know you were a member on this site. Your office is one I contacted. I will be sending the discs from his initial scans this week. His Ca 19 was at 110,000 and after 6 chemo sessions it has dropped to 1365. I am absorbing more information every day. My son is 30, has always lived a healthy active life. This is such a shock. He is tolerating the chemo well but it is still chemo. If you had never meant him and ran into him today it would be hard to believe he has cancer. I’m hoping to find a cure while he is healthy enough to tolerate what is necessary to accomplish it. THANK YOUSeptember 3, 2012 at 4:25 am in reply to: Minimally invasive approaches to extrapancreatic cholangiocarcinoma. #63887
Thank you very very much. I will contact him after my sons next scans are taken in the next few weeks. He is responding so well. Have you ever heard of anyone surviving this cancer WITHOUT surgery? I just want to help him make his life the best possible whether it is one day or one hundred years. I am grateful for how much more engaged in our daily lives my family has become. We do not take anything for granted and do not leave things unsaid! Thanks so much for your help.September 2, 2012 at 12:52 pm in reply to: Minimally invasive approaches to extrapancreatic cholangiocarcinoma. #63884
Thank you so much Eli. From my understanding he has two nodes close by. His liver appears to be fully involved and I’m not sure about the direct sites of his tumor(s). I’m going to sit down with his MD and get the answers to these questions. But it is very confusing to read who will perform surgery and their parameters as they all seem different.
I believe the people on this site know more regarding this disease then the medical community. After all we all have a personal stake in Cholangia.September 2, 2012 at 4:14 am in reply to: Minimally invasive approaches to extrapancreatic cholangiocarcinoma. #63882
I do not know if this is the correct area to post this question, so please bear with me. My 30 year old son is responding fantastic to his regimen of cesplatin and gemzar. Tumors receding and blood counts coming down. Anyway, what makes a person open for surgery or not. I read you cannot have surgery if lymph node involvement then read you can. I’m asking because I will be talking to surgeons at different institutions in the next few weeks in hopes of finding one to perform the life saving surgery on my son. But the more I read the more confused I become. Thank you for your patience. And the very best of luck to all of you fighting this yourselves or for your loved one. This site has proven itself to be so informative.
I realize this will not be a popular post but the facts for my family with CTCA, Stanford and UC Davis are quite different then I’m reading here. The “major medical institutions” we first went to could not diagnosis the cancer. The appointments were weeks out, waiting for test results took days and the left hand did not know what the right hand was doing. We went to CTCA whom diagnosised the cancer, IMMEDIATELY AND EXTREMELY AGGRESSIVELY began treatment and my son is now walking, driving and enjoying his life again. Yes they are a for profit hospital, that was founded by a businessman who lost his Mother to cancer and despised the way they were treated. They are positively not just in it for the money. They are not a preferred provider on my sons Blue Shield/Blue Cross, they accept what the insurance pays and do not charge us the difference. They said do not worry about it, I worried, until we received the bills. True to their word. I am not worried about it. They will also pay your deductible if you are not able. They deal with people in late stage cancers. Realistically the survival rate will be low, but not from lack of excellent care. They have researchers closely involved with every institution worldwide. AND if your insurance will not pay for a drug (chemo) they will absorb the cost if it is necessary to your treatment. It is not just shine and glitter. The patient is number one and they have proven that to my family and many more we have met there since June 1, of this year! Stanford is so over worked, over crowded and understaffed they lose you in the shuffle. Davis hadn’t a clue. CTCA does not receive the research grants and govt monies the large institutions do but they do accept minimum payments from insurance. Sorry this was so long but I thought a response from someone who is there and appreciates them should be heard. This does not mean I am not looking under every rock for a cure for my child, but every rock I lift confirms all I’m being told.
One more question to PCL1029, what would make him a candidate for surgery? And what would it be…..the Whipple or a Liver Transplant? Thank you so much for all the help and everybody being here. This is such a little known cancer!
He is receiving Cisplatin and Gencitabine. And yes there has been recession in the lymph nodes. I don’t have the numbers right now. I found out his Ca19-9 was at 110,000 when we arrived and now it’s at 3000.
I saw on this site where a woman called Jathy had transplants and is cancer free. I was hoping and wishing………
Thank you for the help. The learning curve is sharp. I describe my entire life like the fellow who puts a plate on a stick spins it then does another and another, etc. I’m that plate spinner and I’m scared if one drops I lose my child!