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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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This experience at that hospice was disgusting! I am so angry and I feel horrible that Teddy had to endure such terrible pain and treatment. You certainly have done the right thing to expose this travesty.
God Bless you and your family.
The news about Kris has broken my heart.
That was beautiful Lainey.
Lainy: I got the goose bumps reading what happened to you last night. I believe too and like you, if that happened to me I'd sleep like a baby.
Teddy will always be remembered by me. There were many personality traits Teddy had that reminded me of my husband who is healthy. Your advise, comments, and knowledge regarding this disease will continue to help me with my brother Ned who is in the battle. My sincere condolances to you and your family. I am glad Teddy's suffering is over.
God Bless you, Victoria
Hurrah for you!! Nothing like being home.
Lainy's suggestion regarding someone going with your mother to the doctor is very important. I'd like to add that if at all possible, rather than take notes, record the visit. That is what my brother did when he went to his appointment with the onc. dr. He was able to listen to the recording as often as needed to be sure he heard and my sister in law heard everything correctly. He also burned copies and sent them to family so we all knew exactly what the diagonosis was, the treatment plan, and prognosis.
I am so very sorry that your Dad has passed. I have read your posts often because I hope to be as caring and at peace like you and your family when the time comes for my brother (hopefully a long time away). You did all the right things. Please accept my sincere sympathy for your loss.
Oh boy, I'm relieved that my inner feelings about pink vs cc are shared by others.
I so very happy for your great news including Teddy sleeping better and being all nice and fresh!
I've been following your recent ordeal and I wish you much luck on this surgery. How awful to be vomiting all the time!
Good news/what's working? Here is an update on my brother Ned. On Sunday 09/26/10 a benefit was held for by brother in Buffalo, NY (actually in a suburb where we were raised, Ned still lives there), called "A Night for Ned". This benefit hosted 6 live bands as well as auctioned prizes and was very well organized. Three of the participating bands were groups Ned currently plays in and 2 of them are Beatle groups. "I get by with a little help from my friends" is certainly a fitting song that ofcourse was played. I know that 800 tickets were sold @$25 each and the tribute by all of his friends, fellow musicians, and family was the best medicine money can buy. It will be a lasting memory for all but most importantly has left my brother feeling on top of the world! Although I could not attend I live 1500 miles away in Florida, I will be visiting Ned starting this Wednesday and will get a copy of the filmed event. I will also get a chance to meet his onc dr. for his important visit to see what the scans show after 3 or 4 rounds of chemo.
Right now, Ned is happy, comfortably pain free and so I am happy too.
I just wanted to tell you that my brother who was diagnosed July 1 2010 with stage IV cc has mets to the bones (spine & pelvic) and abdomanal. He is tolerating his chemo (gemzar) very well. The xeloda chemo was a very high dosage and was removed from his regime a couple of weeks ago due to swelling of feet and ankles. The swelling did indeed go away after xeloda was stopped. He is getting his first scan this Wednesday the 29th to see if chemo has helped. He says he thinks it has made a difference because he no longer has pain in pelvic or shoulder blade. You are lucky you have not suffered with pain in spine and I pray for your continued good feeling. Victoria
Kris, my husband and I watched SUTC last night for awhile, but I got all weepy so we had to change channels. I'm glad to see an advocate such as you step up to the plate so that there can be more awareness for cc.
Thank you for taking the time to look at that website. My thinking was similar to yours about the obstacles that needed to be overcome. These teasing hints about the true cures being kept from us is very disturbing to me and I'm sure others also.
Although, I am the cc club member, my brother is the patient of this disease. I guess you call me the researcher so I do spend a great deal of my time reading the discussion boards and trying to learn, learn, learn. Your suggestion regarding "Knockout" is the 3rd or 4th I've heard and so I think it's time to get that book.
My brother Ned forwarded a link to me regarding this very old form of cancer treatment called Coley Fluid Therapy. He asked me to look into it, I searched it on this site and found that there has not been past discussion about it. The link is www.mbvax.com. Has anyone heard of any clinical trials about this treatment? It was interesting reading but I really don't know what to think of it. The website says some countrys won't allow it which makes me wonder. If anyone gets some time take a look at this link and tell me what you think.
Where is the fluid build up? My brother has swollen ankles and feet since he started same chemo as your sister.
Ever since I heard the tape my brother Ned made of his oncologists diagnosis, and treatment plan, I've had something nagging at me. As I've said before, Ned has Stage IV cc with mets to abdoman and bone. The cancer was found when he complained about shoulder blade pain and pelvic pain. No matter, the thing that bothers me is when his doc described the treatment plan which was 10 days of radiation to spine immediately and then begin chemo with xeloda and gemzar. The IV one on day 1 and day 8 and after 3 wks of xeloda he gets 1 week off and then start over again. My brother's question to the doc was "start over again for how long"? The doctor said, forever. I don't get it, where's the quality of life in that? I mean this stuff is poison so does this mean he takes this treatment until the chemo takes him out rather than the evil beast cc? I have not discussed this with my brother ( I live far away from him) but I had to get this off of my chest and I knew you would all let me say it. Have a blessed day all of you, Victoria
I am happy to share this positive information. Thanks for your kind words. Lainy, how is Teddy today?
I spoke to my brother Ned on the phone today. He started his 2nd round of chemo (pills and IV). He has done very well on both so far. He had a little trouble around the 2nd week after radiation to his T-1 thru T-8 with a very sore throat. He told me it is better now. Ned also told me that his hip pain, which is from a tumor on his pelvic is minimal now and the past 2 days he has not needed to use a cane. I was thrilled to hear that and after we got off the phone I took my nightly walk and practically skipped down the streets thanking the dear lord for this great news. He says he feels very good and that my friends is what I pray for most of the time. Ned is a very gifted artist and musician. He is doing a lot of music writing and painting since he can't work at his regular job. The arts have always been is first love so mentally he is a very happy man right now.
Thanks for listening. Victoria
I have only been on this site for a few weeks but spend a little time each day reading posts and members experiences. JeffG got my attention quickly because of his fight with cc mets to bones and pain associated with it. This is what my brother is dealing with (with a attitude much like Jeff's). It took awhile before I realized that Jeff had passed. I have read all of your comments about this wonderful man and could not agree more. I feel there are some members who are taking over where Jeff left off and I say thank you to each and every one of you for the compassion, understanding and knowledge each of you bring to this great website. I'm so very happy I found this site and honored to be part of the family.
God Bless you all, Victoria
My brother just completed his first round of chemo xeloda/gemzar. Around day 7 of the IV (gemzar) his ankles swelled. Went to cancer center to be sure that it wasn't blood clots, it wasn't. He is weaning off of steroid that he took while getting radiation. That helped his pain in neck (lots of met tumors there) but as he weans off the steroid his pain is returning. Oncologist increased his pain med (methadone) by 1/2 pill. I don't know the dosage but my brother doesn't like taking too much of it cuz of getting tired and feeling like he's in LA LA Land. No one has suggested RA, seems they think the pain is due to tumors on spine.
Thank you for your response. I spoke to my mom on the phone yesterday and she told me my brother had some nausea the morning after his first treatment, but drug for it helped. I will see in a few days if fatigue sets in.
Hi Tiffany: I call my mother mommy all the time!! I'm so happy for you and your family.
Hi all, this is just a quick update on my brother Ned's treatment. Today he started his IV chemo. He has been on xeloda for 5 days but today was the first treatment of gemzar. He had no problems with the pills so far but I'm anxious to see how this IV effects him. Anybody who can tell me what experiences they have had with this gemzar?
Posts found: 1 to 25 of 32
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