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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.
Posts found: 16
I would like to give you an update on my Dad. He is still receiving ,the Sorafenib & Erlotinib, although the study has been suspended. He received the results from his CT scan on Tuesday. His tumors are the same size and there is no change. Good news in my book! In October, my Dad will have been on this study for 1 year. He is still playing golf, planning vacations, working out at the health club and watching his grandchildren.
My Dad started the trial in October. He told me that he is on his 5th cycle. Two weeks after he began the trial, he had a pinpoint rash. (the rash never bothered him...located on his back and belly) Shortly after the rash began, the skin started to peel on his fingers & toes. Also, his heels were tender and at times, he felt cold. He has started and stopped the trial twice. Once, to have a stent put in and than two weeks ago, he had the bleeding ulcer. He does drink tea. He eats a regular diet, no alcohol.
As for the additional information from friends, the internet, etc...maybe your Mom could write down the ideas, and share them her doctor.
Glad to hear your Mom's spirits are up!
My Dad met with the oncologist today. They are starting him back on the trial. The ulcer might have been caused from ibuprofen. Prayers for your Mom and please keep us updated.
My Dad is on this trial. Unfortunately, last week he had a bleeding ulcer, was hospitalized for 5 days and has stopped the medication. He is having a CT scan tomorrow and has an appointment next week with his oncologist. At the appointment, he'll see if he resumes the medication...maybe the dose will change? I like the idea of options! In December,while on this trial, my Dad had a scan and the doctors said the tumor shrank, a tad.
Please let your Mom know that my Dad had cc 15 years ago.
My Dad is just on the two medications. You can look up the trial he is on from this web site. It's under "clinical trial". As to how my Dad is doing, he's had some peeling & swelling skin around his fingers. He's also had tenderness on the heels of his feet. Additionally, he feels cold & is tired. He also stated that he seems more forgetful. He sees the doctor weekly for a blood draw. Fortunately, he is out and about daily....living life.
Keep the prayers coming! As you can probably imagine, when the doctors reviewed my Dad's file, they can't believe he's a survivor of 15 years. I always thought that once he got past the 5 year mark, without cancer, he would be cancer free. ( I don't know why I had 5 years in my head). Anyway, the whole family has renewed their membership to the, "I hate cc fan club". I am praying that God gives the doctors the wisdom to fight this cancer and He gives Dad another 15 years!
My Dad is on the clinical trial of Sorafenib/Erlotinib. He had a pet scan last week and today he received his results. According to my Dad, the doctor said the tumor in the liver, shrank a tad! My Dad had cc 15 years ago. It is back with a 4 in. tumor in the liver and 2 spots in the shoulder/neck area. My Dad & Mom are celebrating with hi-tea in Chicago! (definitely my Mom's idea!) I am so happy that the tumor isn't growing and thankful for this good news!
Thanks Lainy! I will pass on the heating pad idea and will see if he would like an electric blanket. My Dad is coming over tomorrow for Thanksgiving. I will be sure to turn up the thermostat and throw a log or two on the fire. I will let him know that Teddy had a "3 quilt night", and that this is common.
Dad is now a month into his chemo. We just came back from dinner, he said he is feeling cold a lot. My Mom said, they keep forgetting to ask the doctor about it. Is this common? Any suggestions besides turning up the heat and layers of clothing....
Wondering if anyone is on this trial?
Dangle your feet in the pool for All Of Us!
You might want to check out, Wellness House in Hinsdale, IL. They are about 40 minutes from your area. They offer lots of support for cancer patients...their families....in a variety of ways. Please check out their website. There is no cost at Wellness House.
Lots of prayers!
My Dad didn't have stents, they were catheters. He never had a bag hooked up to the cathethers. They were changed every 3 months at Loyola, (Maywood, IL). He had the catheters for 8 years. When his doctor was retiring, they decided to take them out. There was a 50% chance of him needing them back in. He has been without them ever since. He always called them, a thorn in his side. He couldn't wait to go for a swim when he got them out! Thanks for the kind words.
15 years ago Dad had cc in the bile duct. At age 55. He was treated with radiation...which did nothing but stenosised a different duct. They inserted 2 catheters into the ducts to keep them open. Next, they did brachy therapy on the tumor with a radio isotope. (2 times). Mom, Dad & I than hopped the pond to France to pray at Lourdes. He has been cancer free for 15 years. My Dad has walked 3 daughters down the aisle. Seen 6 grandchildren born. He is now tackling cancer in the liver and 2 spots in the neck/shoulder area. The doctors that are treating my Dad, cannot believe he is alive. He is on his third week of medication for a cancer trial. This trial is in stage two. Dad said they will do a ct scan around January, to measure the tumors and to see how the trial is going. Dad is feeling good. Just put the golf clubs away for the season. So far the only side effects, of the trial medication, are rashes and peeling skin around the finger nails. Dad turns 71 years old next week! Again...GO DAD!
My roommate from college works at Harpo... I will pass the cc topic on to her. Let you know her thoughts. Her Mom is currently in the hospital, so it might be a bit before I get an answer.
Thanks for the link...this gives my family/friends a better understanding of what my Dad is taking on.
My Dad was diagnosed in 1995 with cc. Unfortunately, the cc is back and has spread to new spots. Dad has decided to fight this a 2nd time. Go Dad! He is a great Grandpa and Dad. I am glad there is this board to read,share,etc....
Posts found: 16
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