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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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My heart aches for you because I am going through the same thing. Chucks is sooo skinny it breaks my heart. Only unlike you I am not as strong. I am finding myself breaking down everywhere except work. My stomach is so sick from stress I can't see straight. Looking at him makes me cry. He is not what I once knew. I feel as though I am losing my whole future. This man is my future husband, father of my children, best friend, and I am losing that and don't know how to be strong anymore. I know I am making it hard for him because I am so distraught but my whole world is crashing and I feel soo alone. He is in so much pain and there is nothing I can do. He wants to fight but I fear the fight is gone. This has come so quickly. I feel selfish for making him fight for me. The oncologist still has not given up on him but he has missed three weeks of chemo due to hospitalization for pain. He wants to not feel at all. Charlene, you are a brave strong woman. I wish I could be the same.
Chucks has now been on Gemzar 11 weeks and tarceva only 4 weeks. We ended up in the hospital with pancreatitis. Don't know what it was caused from. The tumor has grown a bit but not much. Tumor markers are up a bit but not much. The oncologist is giving us a choice of sticking to the gemzar/tarceva being that he has not been on the tarceva for that long or switch oxylplatin. Now we feel like his body is handling the tarceva pretty well and the oncologist described it like this... If you have a car and you are going 200 miles an hour and all of the sudden you want to go in reverse. You don't just stop. You slow down 150... 100.... 50.. 25.... stop and then go in reverse. He feels like we haven't given the combo gemzar/tarceva enough time to start shrinking the tumor but I mean how long do we give it? What if by the time we want to switch it's too late? What do I do? I think that the tarceva was helping him and I was happy that he wasn't too sick on it but I am just lost right now.
same here.... been wondering how everything went. I am still praying for the best.
I'll tell you guys! I wish chucks had breast cancer too!!!! LOL
I am just at a loss for words. Chucks had a recurrence two months ago. We been doing gemzar and tarceva for two months now. I am scared everyday. I worry everyday. I think about the future and wonder if there is one for us. We might never have the perfect wedding or get to have babies. I will be ruined for the rest of my life if I lose him. Sometimes I get so angry I forget to breathe. I just want to run away. I want to wake up and be somewhere else. I want to pretend this never happened to us. He's only 31! Why couldn't we have had a couple more good years together but nooo... I struggle with happiness. I am jealous of those that it comes so easy to. Sooo.... I think deep down inside we all have those same feelings. Why him! I can think of many others that deserve it more and yet..... they live (it seems like forever) Why us? We were just starting our lives together and trying to live right. All of these thoughts sometimes take me over. I run away to my moms or to the beach to just breathe and cry. I always come back. I am tired of hurting and tired of seeing him in pain everyday. I am tired of worrying everyday. I am tired of my heart aching everyday. I am tired of being on the verge of tears EVERDAY! I am just tired of being tired if that makes sense. I do the best I can with what I have. Keep going... keep fighting.... and keep pushing forward. That is all I have left. I feel everyones pain. I am truly sorry!
well chucks is currently on Gemzar and Tarceva. Our oncologist said that he is getting very good results for the combo. You should check with your oncologist. The main side effect I have noticed is rash and acne. Chucks never had pimples and now has a lot. He also complains about his stomach hurting a bit and minor diarrhea but nothing unbearable. He's been on this for 8 weeks now and we should be getting a cat scan shortly. I'll let you know....
Best of luck to you and John. It's all in the fight. Oh and since being on the tarceva, he has gained 3 lbs after losing about 15.
My heart is absolutely breaking for you right now. I just fell apart reading your post. I am sooo very sorry. This is just not fair what this cancer does to us. I am so sick of living in fear everyday wishing for a different life. I will search for programs that might be able to help. I just wanted to let you know that my prayers are with you and John. How strong he is to continue the fight. You know he fights for you. What city do you live in?
Crying as I type,
That sounds great and relaxing (or not so relaxing) with all the grandkids. Have lots of FUN! I am sure you kids will have a great time.
Gain some weight, take extra vitamins, make sure to exercise and have as few people as possible at the hospital. Chucks after resection had an awful hard time. Infection after infection. Many people wanted to see him and I can't say it was because of them but if I could do it over. I wouldn't allow so many people in and out of the room. People carry infection and with a compromised immune system........... no brainer right.
Best of luck
Go for it Jeff! I will be reading and following up on your blog.
I am soo very sorry to hear of your loss. You seem like a wonderful and supportive daughter. Keep those memories with you forever. Easier said than done, I am sure. I wish you and your family the best. May God bless you all especially the grandchildren. Poor babies. So young to be going through this. Support them as much as possible.
With a prayer,
Did you see what Jeff has been on. I think it is called Zometa. It is fairly new I think and seems to be getting great reviews. Chucks is currently dealing with a recurrence in the liver but is solely based in liver. He doesn't have bone mets. Check out the Zometa, definitely could hurt.
Chucks use to be on the Fentanyl patch and said it worked really well. Anyway, I am surprised the doctor is prescribing both oxycontin and the fentanyl patch. When I requested this for chucks. The doctor said he did not want to prescribe both. It was one or the other.
Sounds great Jeff. I also looked into this and it sounds very promising. I wish you the best.
Ensure would be great for you mother to try being that she has no appetite although it makes my fiance sick. I have been buying a protein powder with muscle mass builder and I make him smothies. He tolerates that pretty well. You can make it with fresh fruits like Banana's, strawberries, watermelon, milk, ice cream, mix it up a little bit so it's not so boring. Our oncologist said that with this type of cancer, he recommends high amounts of protein on a daily basis. As much as he can take in.
Wishing you the best,
well, you have all of us. I think it is really up to you whether you diet or not. I haven't changed the way Chucks eats. If he wants a cheeseburger. God willing..... he will have a cheeseburger and if he can get it down then SCORE!!!!!!!! I just want him to keep on the weight while going through chemo. Surgery was what caused chucks to loose all the weight and since he just never was able to put it back on. Now I feel like I force him to eat things that everyone else says are bad but the doctor says "go for it. Keep the weight coming" It's a personal choice. I try to have him eat as healthy as possible without taking away that good fat and protein.
I'm so sorry. I don't know what to say. Be strong. I will pray for you and your family.
Chucks as well was overweight, but unlike you has lost all that weight. He went from being 220 to now being about 130lbs. Seems okay but God he doesn't look that great. Now what I find interesting is that people are so concerned with a healthy appetite yet if it were not for the weight Chucks had to loose, I don't think he would be here today. People get so worked up on "what they could have done to prevent this" and I say WHO CARES! They told us it was probably due to IBS or Cholitis that Chucks had since a kid.
Patti, what I find most interesting is I think a lot of patients with CC have the same "lazy ass" cancer. Chucks cancer as well when observed with a microscope had something (can't remember what it was called) that caused his cancer to progress very very slowly. The oncologist was thankful for this when the recurrence came around. He had been sick since he was a child but doctors never found out what he had. They did a liver biopsy when he was 9 and found nothing. Now the Doctors think it could of have the cancer laying dorment for about 20 years. That was the craziest thing I had ever heard.
Either way...... I think food and weight is the way. I am not concerned about what Chucks eats as long as he eats. He body needs the energy, protein and fat to sustain while going through treatment.
Thanks for this post. Something to think about.
So interesting Sara,
Thanks I am definitely going to look into this. Good work.
This is really weird. I posted up a topic "good or bad" basically saying how it is so strange that after 4 weeks of chemo (gemzar/tarceva) chucks is feeling better than ever. He is active, eating, walking, feeling pretty good other than tuesdays when he gets the chemo. I was worrying that it meant his body was not reacting to chemo but hearing all this good stuff about everyone else. I feel some relieve. Keep up the good work guys. I think we are making some progress on this sucker!
Jolene, I cry for you. I am so sorry for the loss of your father. You are a good and loving daughter and did everything you could do for him. Have peace with that if nothing else. I will pray for you and your family. YOU WILL ALWAYS BE DADDYSGIRL!
With all my love,
I hope you know that you are an inspiration to me (well, I think to us all) Keep up the great attitude! I love it. Jeff also, I have to agree with Violarob about Tarceva. Our oncologist said that he has been having great results from the combination of gemzar and tarceva. He said he had a patient that he put on these two drugs and her tumors shrunk so fast he couldn't believe it. Also with very little side effects. Gemzar and Xeloda are first protocal but he only left chucks on Xeloda for a week and a half and then switched him to Tarceva just to show he tried first protocal and say it didn't work. He said that he really believe in the gemzar+Tarceva. Best of luck Jeff.
That could mean his albumin is low or there is a blood clot. In chucks case he has a bloot clot which caused him to develop ascites and edema. Just because br is high doesn't necessarily mean albumin is low. Try to get some info from the docs. It doesn't seem like they are keeping you guys very well informed.
well, chucks br was at 18 when first diagnosed. If the br keeps going up there has to be some type of blockage of the bile. They put stents in and the br came down pretty rapidly. It is a fairly easy procedure. You should ask your doctor why this hasn't been done or even talked about. Has he developed ascites or edema (swelling in abdomen and legs)?
I think you should get second opinions about having stents placed to bring down his bilirubin. After that he can start treatment (chemo/radiation) It is tough to tell a doctor what they should be looking at but most times is very helpful to have somewhat of an understanding of what treatments/options are available for this disease. We need to know this disease and be able to advocate for our loved ones because obviously they are most times unable to do so for themselves. I know from personal experience how difficult it is to stand up to a doctor who you think is looking out for your best interest but unfortunately, that is not always the case. I don't understand why he doesn't have stents placed to help drain his bilirubin. Praying for you and your family.
Posts found: 1 to 25 of 68
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