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January 2, 2011 at 5:29 pm #45544darlaSpectator
Tommyguns56,
You also have my deepest sympathy and understanding. My husband was 62 and died 7 weeks after his first admittance to emergency and only a week after they definitively diagnosised it as CC. I came here a few days after he passed and I highly recommend you stay with us. The strength and support I have gotten from all the caring people on this site is what has kept me sane. When it happens this quickly, you really don’t even get a chance to wrap your mind around it and they are gone. I have been told your thoughts and feelings can be similar to those with post traumatic stress syndrome. Try to remember your dad the way he was before all of this happened and know that he is now in a better place, no longer suffering or in pain. He will always be with you in your heart and memories.
Please come back often even if it is just to vent you feelings. It will help and we are all here for you.
Darla
January 2, 2011 at 1:26 pm #45543lainySpectatorDear Tommyguns56, I am so very sorry about your dad. He is now among the most courageous and loving people that have ever lived. He is also now at Peace. Please know that to be missed is to live on in our hearts. My deepest sympathies and prayers go out to you and your family.
January 2, 2011 at 1:23 pm #45542katieloumattMemberDear Tommyguns56,
I am so sorry to hear of your Dad’s passing. I am a regular on this board but haven’t been around for a couple of weeks.
I send sincere condolences to you and your family. I know just what you are feeling, I lost my Dad to cc 18 months ago. He was just 7 weeks from dianosis to his death.
The days and months ahead will be tough but you will find lots of support and help on here. Think of this board as an extended family, there is usually someone always around.
Thinking of you,
Katie
January 2, 2011 at 1:15 pm #45541tommyguns56MemberWish I could have kept everyone posted on my dads condition but he lost his battle with this quick killing cancer on December 28, one day before his dads birthday and of course three days after Christmas. I hope and pray they find a cure for this disease for everyone on this site. I never seen what cancer could do to a persons until my dad quickly was diagnosed with CC . Good luck everyone I’ll pray for all of you still fighting.
December 15, 2010 at 1:08 am #45540kimcirucciSpectatorTommy, just tell your dad to stand up and keep fighting. It’s harder to become a target when you’re moving. No one knows the future & don’t listen to anyone who claims to know, especially doctors. Just help your dad to live his life & enjoy every day. Never give up & never lose hope. Everything can be beat and that goes for cancer too. All the best to you & your family. Prayers coming your way from NJ.
December 14, 2010 at 10:10 pm #45539vwallisMemberMy sister is 34 with 2 kids. They told her she had at best 6 weeks to live. That was June. She is still with us and going strong. Prayers are what do it. I will pray for comfort and clarity for your father and your family.
December 14, 2010 at 9:50 pm #45538rayeMemberTommy,
Where is the CC located so we can help you and your Dad better. Somebody told me I had no hope with my CC. Rubbish. I’m here because I refused to believe their verdict.
Thats the reason your Dad is still hanging in there.
December 14, 2010 at 7:05 pm #4553732coupeSpectatorTommygun,
Wow! From your Dad’s history, it’s obvious that he is a fighter. That will serve him well because he has a fight on his hands. This fight can be won – sometimes in one small skirmish at a time. Anything that buys him time is a victory. Praying for the next victory…God Bless!
bobDecember 14, 2010 at 5:47 pm #45536lainySpectatorDear Tommyguns56, welcome to our wonderful story. What a story and your dad must be some kind of wonderful and a great fighter. You have done all the right things and I am very anxious to hear what this ONC says nd does. Of course praying for the best. Please keep us posted and you will see that once a game plan is in place the shock will wear off and the fight begins!
December 14, 2010 at 5:16 pm #4473tommyguns56MemberI’d like to first tell you that my Dad has Cholangiocarcinoma and he was diagnosed with this killer cancer about 6 weeks ago and that this is my first post. Now I will start from the beginning. My has had diabetes and non- alcoholic cirrhosis of the liver(the cirrhosis for about 8 years now and the diabetes for longer than that). He has also had problems with kidney stones since his early 50s and it seemed as if they would never go away, or when they did get rid of them , more would return within a couple of years. He will be 63 on the 18th of this month. He had his gall bladder removed years ago. I am the second of three boys. The last time he had any type of procedure to break up the stones was in June of 2010. At that point he was in so much pain he couldn’t stand it as they hit his kidney and liver with the device used to break up the stones so he could pass them. As he started urinating blood and getting very sick(up to this point no one at all had treated him for his cirrhosis). He went into the hospital where they told us that during the procedure his kidney and liver must have been hit accidentally. Now his liver was an issue and they started doing tests upon tests. He was not able to urinate regularly as something was blocked and most of the fluid in his body wasn’t getting through his bladder so it was backing up. The next thing we know, he is in dire need of a liver transplant. We live in Michigan so there are a couple places that this could be done at but he would have to be put on a list and wait(possibly up to two years). As the fluid built up in his body, they had to start draining him every two weeks, removing about 8 liters of fluid at a time. We chose Henry Ford hospital as we had heard amazing things about this hospital. They told us there at one point that this could be cancer so they didn’t want to do a biopsy because it could follow the needle out if it was cancerous. As he was getting drained every week at a closer hospital. The Henry Ford surgeon decided to do a biopsy knowing the risks. We took him to his appointment at Henry Ford and had it done. The surgeon told us that because he needed drained at the time he came in, they were able to get three good pieces and if he would have been drained , they wouldn’t have been able to get any tissue. They didn’t drain him there so we had to go back to the hospital that he normally has this done as he was having a hard time breathing , they did so and he ended up being admitted to this hospital. While in the hospital more tests were performed ,and in four days we received the call that we all were dreading. He did indeed have Cholangiocarcinoma and was told by the team of surgeons from HF hospital
that they couldn’t do anything for him at all. So now the liver transplant was out the window and he has one of the worse cancers imaginable and my two brothers and I have been doing research ever since. His regular primary doctor talked to HF and she told us that we could use anything we wanted to try and help him. So we heard about Haelen and my dad agreed to drink this nasty smelling and looking fermented soy product. Yesterday was the first time since the news was passed along to us that he has seen a specialist outside of HF hospital. He had a phase 3 ct scan and then went to see an oncologist who is closer to our home as HF is in Detroit and we are closer to Flint. No results regarding size of the tumor growing or shrinking although this doctor told us he is going to use two different light chemos on him , two weeks on and one off to see if it would help. At HF it wasn’t even an option as they said it would do no good. God works in mysterious ways. Ive watched my father in just 6 short weeks go from being able to tear my arm off with one hand to barely being able to shake it, and loose more than 75 lbs. in the same amount of time. I have never seen anyone go through this and neither have my brothers or mother. So we are all in shock. The only thing we know for sure is that he is a stage 4 or phase 4 and we finally found an oncologist that would at least try and help him. God Bless this man, when HF hospital and the U of M wouldn’t help us and told us to get him in hospice care( basically spend as much time as we could with him cause he don’t have long), This doctor out of flint MI steps up to the plate and is going to try and help him. I have read a lot of the stories on this site , and am amazed how many people have survived this killer disease when we were told there was no helping him. We are all trying to stay positive and this site has helped us out so much, thank you.
We need all the prayers and help we can get. -
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