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La fundación de colangiocarcinoma (CCF) ahora ofrece servicios de traducción en Español.
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Posts found: 19
Thank you for sharing your story. I hope you are well. I live in MA and am considering having genetic testing done for possible Lynch (or other) syndrome, and was wondering, would you recommend testing at Dana Farber or at Mass General?? My brother passed away recently at age 43 from CC, and my mother's side of the family has had endometrial, kidney, bladder, breast, and lung cancers. Thank you so much for your help!
I would like to contact you to find out how to help with or donate/ participate in your fundraiser. I live in MA not too far from Manchester NH and lost my brother a week and a half ago to CC. Please let me know how I can help.
I am so very sorry to hear of the loss of your husband. He was so young, as was my brother, it is so unfair. Please know you are not alone in your grief and sadness. Comfort and hugs are sent your way.
Clare, what a great thing your husband has done with the race. I hope all went well. Thinking of you and your dear sister. I also pray and hope for better and early diagnosis, and will search for meaningful ways to contribute to this goal. Hugs to you...
I am so sorry to hear of the loss of your dear mother. I also lost my brother to this terrible disease a week and a half ago. It was quick also. Knowing he is at peace and no longer in pain helps me deal with the pain of losing him. Know that you are not alone in your grief. Hugs and comfort to you and your family.
Lisa, thank you for your contact information. I would like to contact you. Your blog and experiences are amazing, so great of you to share ! Lainey, what is the book you talked about? Is it posted somewhere?
Thank you Lisa for your very comforting words. They really touched my heart. I am always amazed at how warm and loving virtual strangers can be in the face of tragedy. I read on this forum that some people were depressed and upset to read my posts of my brothers quick passing. I am so sorry for this, I never intended to hurt anyone by sharing my experience, and my brother would never have wanted that either. I even hesitated to post anything but the support here is so strong and so needed for all living with this disease. My brothers case was very different from most I believe. There are many wonderful stories of hope and survival on this forum and much useful information on how best to fight it. Do not give up. A positive attitude and seeking out all the information and doctors who are familiar with this diagnosis is very important. I for one will do all I can, in my brothers memory and honor, to raise awareness and funds for research and a cure for this type of cancer. God bless all of you in your fight and remember you are never alone in it.
Thank you all for your condolences and kind words. My family is having a very difficult time. I appreciate any and all prayers and lots of strength for the hard days that lie ahead. You are all in my prayers too whether you are battling this disease or supporting and loving someone who is or who has lost their fight.
My brother passed away last night at the hospital. He didn't make it to hospice. We are still in shock. It all happened so fast. I feel his presence and I know he is ok now and no longer suffering, but we are so sad and miss him so much. I have no words to describe it.
Thank you all. Gavin and Clare thank you for your thoughtful and meaningful words. It all helps so much.
Thank you all for your support and kind words. He is going to a hospice facility rather than home for many reasons. I hope it will be ok for him. I hope he is not afraid. It has all happened so fast. We have experienced hospice before, two of my uncles died in one, also of cancer, one just 4 years ago. My heart aches. I am so glad to have found this site. It is a little bit of comfort at such a sad dark time.
Found out today the chemo is not doing any good. The blood clots are getting worse. My brother will going to hospice tomorrow. The oncologist thinks he has only weeks left. Our family is devastated. I am angry and sad and depressed, but mostly angry. i dont know what to do with these feelings. It's only been 3 months. He has a three year old at home. It is not fair.
My brother was recently diagnosed and he has multiple blood clots also. They showed up in his leg, arm, and lungs. That is what sent him to the dr. too in the first place. The dr's at the hospital all seem to act like they have no clue why he is having the blood clots. But of course it is due to the cancer. He has been on chemotherapy and so far it is not working for him. But everyone is different. I agree that it is important to get a second and even third opinion, and to go to centers where they are experts in this cancer. My brother did not (he was stubborn and in denial) and I regret that we didn't push him more. There are so many avenues to check out, alternative therapies to try, and all roads are different for different people.. Your wife is so lucky to have you on her side. It sounds like you are doing all the right things. Stay strong and don't give up. This site is great for information and just support from those who have been there and are living it. We had also never heard of this cancer and never saw it coming. He is only 43 and was pretty healthy. Take care and peace and strength to you and your wife. I hope she gets some relief from the clots in her legs very soon.
I am so sorry to hear about your grandmother. Prayers are with you and your family at this sad time. This disease is a thief but it will never rob us of love, for love endures forever. Sending peace and strength to you.
Thank you Pam. I am so sorry to hear about your daughter's passing. This is such a horrible disease. It is sometimes hard to have hope. But we keep moving on. It's so hard. The support here is phenomenal. Appreciate you all.
Appreciate all the support and advice from everyone it really helps. I will keep mentioning the liquid nutrition to my mom and sister in law who are his primary caregivers. Thank you for sharing your personal experiences KrisJ. He did eat some lunch with my mom today. Is having a port put in for the chemo tomorrow and then trying to get him home. Praying every day the folfox is doing something.
Gavin, thank you so much for all the wonderful support and resources. I am passing on to my sister in law and mom. It is so great to have a place to go where people care and understand and have so much knowledge and experience with this disease. Reading others posts and experiences is so helpful too. Our family is trying to find a way to provide for my brother and continue his recovery from the stroke at home so he is more comfortable and maybe that will help with the depression. One day at a time. Appreciate this site and all you do.
Hi Lainey, thank you so much for your helpful and caring response. He has been started on an antidepressant but of course they take some time to take effect. I am not surprised he is depressed either with so much stacked against him.i will mention the carnation instant breakfast to my sister in law and see if he will try it. He has not eaten much since the stroke and starting the new chemo. He lives in and is being treated in Southern Maine and did go to Dana Farber in Boston, but not much more was offered or suggested for him. I'm starting to wish we had pushed for more opinions and looked at other places, but my brother can also be stubborn and it was tough to even get him to go to Boston at the time. We are hoping the folfox works too and that its all not for nothing as he has been so miserable. He is dealing with all this and having to be in rehab to get therapy for the stroke, because that treatment can't wait either. We are all trying to stay as positive as we can. somedays its really hard. its hardest on my mom and sister in law, they are working so hard to take care of and advocate for him. thank you so much for your kind and encouraging words and prayers. It helps to not feel so alone in all this especially this cancer we had all never heard of before. Peace-
Hi, I am new here, my brother is 43 and was diagnosed 2 months ago and is having a very difficult time. Surgery was ruled out with chemo as the only option for now. Gemzar ( I think it's called?) did not work and the cancer has spread and tumor grew larger in short period of time. He has also been plagued with multiple blood clots and had a stroke a week and a half ago. He has no motor loss but has limited communication due to aphasia. Oncologist is calling this cancer very aggressive and has started him on folfox. My brother has had a miserable time with this one, with severe fatigue and lack of appetite. He is also clinically depressed. Anyone out there have any similar issues? Things are looking dire but we are all trying to stay as positive as we can. Our family is devastated and I am heartbroken for my brother and his family. It is hard to see him suffer so and to feel so helpless.
Posts found: 19