lainy
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Dear Cress, Congratulations on Dad pulling through the Whipple. My husband had one and while it is not life threatening it is the biggest surgery to the human body. I am going to try to help you get somewhere on this. My husband had the same problem but they discovered very quickly that the liquid seeping out was from a small hole that opened up inside along the line of stitches. He ended up in rehab for 3 weeks where the ONC wanted to “starve” the hole so nothing at all would come in contact with it. I could not even bring any type of food what so ever in to the room. He was on an IV for that whole time, he called that his candy bag, BUT it worked. The hole healed without further surgery. He was 73 and they just didn’t want to do more surgery. My other suggestion would be to get a consult with another Doctor and see what he says to do. Teddy never had chemo as they said it would not work where his CC was located, this was 10 years ago and hopefully some things have changed. I would ask about a fistula. Not sure but I think that is the word for the hole. Wishing you and your Dad the very best.
Dear Jack, I just emailed you the list. Please let me know that you received it. I pray for a comfortable journey for Diane and you never know how strong you are until “strong” is the only choice you have! You can email me anytime you feel the need. You are not alone.
Yes, I know Shellie, just what you are feeling. When you feel overwhelmed take deep breaths, or a walk. I used to get in the car for a 20 minute drive, put a Mama Mia CD in and sing to the top of my lungs. When I felt better I would go back home. Good luck with Cleveland Clinic! Sending you some huge cyber hugs! { } { } { }
Shellie, I apologize as I am sure I never saw this post. I still feel you need to see an ONC who has treated more patients with CC so has more experience with it. 8 weeks is a long time to go with no treatment at all. This is not a common Cancer as it is still very rare and hard to control and I just have a feeling you need to go elsewhere. I would pick a couple of Hospitals/ONCs and at least get their opinion. Dr. Javle at MD Anderson in Houston is one of the tops in this field Sometime he will give a treatment suggestion if you sent him copies of all tests and LABs. Closer to you is Sloan Kettering in NYC, Cleveland Clinic, NY Presbyterian, Dana Farber Cancer Institute in Boston.
Treatments do not differ because of age as this is still a very rare Cancer, however being younger does help. Usually the plan would be to use chemo to bring down the size of the tumor and then hopefully surgery can take place, it has happened before even to Stage 4 patients. The plan is to find the right ONC and Hospital and then we hope for the best, it has happened before.
As for the Y-90 treatment IF that is suggested by the ONC, you can read more about it if you use our Search button at the top of the page and type in Y-90. Knowledge is one of our best tools for fighting this Cancer. Wishing you the best, take a deep breath and ne very strong!Daisy, I am so terribly sorry about what you are going though. I cannot help in any way with advise but I do have a paper with 10 Signs The End is Near. If you email me through this CC site I would send it to you. I believe that part of the anxiety is just not knowing. This paper will give you the sign to look for. Sending you prayers and please try to be strong. You never know how strong you are until “strong” is the only choice you have!
Oh, Dear Jen, how good it is to see your beautiful face as I think of you so often. I know it is 5 years as Dad waited 6 months for Teddy’s Italian restaurant to open. Where has the time gone?
The pictures are just fantastic and I am glad to read you are all doing good. Just how you Dad would have wanted it. I do remember his dreams at the end and I remember his 1st Granddaughter laughing at him making faces at her with her in the rocking chair and I think Grandpa was making faces in the corner!
I have learned dear Jen, that life is for the living and that the heart can regrow those old familiar feelings. I believe the day will come when the 2 Princesses will see Grandpa themselves when they least expect it. Take care and enjoy the girls they grow up in the blink of an eye!Dear Shelliec, you are both going through so very much no wonder your head is spinning. I have a question for you. Have you given any thought to another opinion? We are big believers in 2nd and 3rd opinions. Like I always say, different DOCs see things differently. You want to make sure all bases have been covered. Also I am posting a site below which you may find helpful.
http://cholangiocarcinoma.org/newly-dx/
Dear Cathie, welcome to our remarkable family and the best place to be for CC support. I am so very sorry you had to find us for your twin Sister, Konnie. As mentioned previously we are huge believers in 2nd and even 3rd and 4th opinions. All Doctors can see things differently and then you can weigh the differences and suggestions. We have had quite a few members who were diagnosed with spots in the liver and after treatment with the right chemo they went on to have surgery. Wishing you and your Sister the very best and please do keep us updated on her progress as we truly care.
Dear Shelliec, Yes, we have had members go through Y90. At the top of the page is a Search engine and if you click on it and type in “Y90” posts will appear from these members.
Dear Rangani, I go your email and just sent you the 10 Signs and I sincerely hope it helps. If I can help further just let me know. Thinking about you and sending prayers and strength to you!
Dear Lorrie & Art, Welcome to our most remarkable family but sorry you had to find us. Know that you have also come to the best place to be for CC support. Do not question yourselves as you have totally done all the right things. You have seen several Doctors and with that already gained a ton of knowledge which by the way is the best way to fight CC. Knowledge! Yes this CC is what we call a roller coaster ride. Just please make sure that the DOC you end up with is experienced in treating CC as it is still so rare. Below is a site I hope you find helpful and please do keep us updated on Art as we truly care.
http://cholangiocarcinoma.org/newly-dx/Dear Faisal,
I am so very sorry to read about your Dear Father. You were so very lucky to have each other and he is now at Peace after fighting a valiant fight. Perhaps stars are not stars at all but rather openings in the sky where our loved ones shine down on us to let us know they are HAPPY!Yea! Matt! Great news and so happy you took a vacation. Years ago I went on BP but they never seemed to work right. About 16 months ago went off and my BP has been more normal than ever before. Go know! JUST SO HAPPY YOU ARE DOING WELL.
Dear Tony, welcome to our remarkable family but so sorry you had to find us. This is the best place to be for CC support. We are huge believers in 2nd, 3rd and 4th opinions until you and your wife feel totally satisfied with the DX. Different Doctors see and feel things differently and it is a good idea to gather the test results and see someone for another opinion. Gem/Cis is usually the first line of Chemo given. I am not sure if anyone has had this exact type of CC but if you go to our Search engine at the top of the page and type in peritoneum posts on that subject will appear and my be helpful. Wishing you both the very best and please keep us posted on her progress as we truly care.
