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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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It is with great sadness and broken heart that I share with you Ron passed away on February 4. As I have previously posted, Ron was cancer free for 7 years following his resection. The cancer decided to return 1 1/2 years ago. We were in denial because CT nor MRI showed any evidence of cancer. CA-199 was less than 100. Blood work showed a different story. In the end, he did not have to suffer long. His fatigue level was the only thing that caused discomfort.
Ron felt truly blessed to have lived 8 1/2 years with this dreadful cancer and was totally at piece when he passed.
I pray daily for the people on this website fighting the odds. You will all remain in my positive thoughts and prayers.
Fabulous news. Love to see that graph going south!!
Matt, This is fabulous news. Such a significant drop in your CA 19-9. Reading this made my day. Keep up the good work.
So excited to hear of your decision to try Keytruda. I look forward to seeing your positive posts on how it is working. My husband Ron is in a similar situation as you. His CT scan shows no evidence of a recurring cancer but his blood work numbers are elevated. His CA 199 is 110 but his Alkaline Phosphatase is over 500. Billirubin is hovering around 2.2.
He is now going to his oncologist on a monthly basis for blood work. He is very blessed to be an 8 year survivor. He has a permanent stent which now appears to be causing some problems with a slight blockage. Next step will be to get it cleaned out.
We live in Midlothian, VA so we are near you. Most of his cancer treatment has been at Sloan Kettering with follow-up care at Virginia Cancer Institute.
Sincere best wishes to get rid of this cancer and have many wonderful years with your family.
Fabulous news -- keep up the good work!!
Hello! Ron went for his 3 month check-up following chemo and radiation and the liver numbers are still not where we would like them to be but had improved. His CA19-9 dropped from 109 to 65 so we were excited about that. CT scan still shows no evidence of cancer. Overall, he feels good but continues to get tired pretty quick. We return in 3 months for CT and more bloodwork.
Oncologist is still baffled why this returned after being cancer free for seven years. He said Ron's case is not even in the textbook and out of his realm of predicting what comes next. So we watch and wait.
Hope you all have a happy and safe Memorial Day.
Nancy....so nice to see you back on this site, but baffled as well by the recurrence of this cancer. I think the majority of us have a tendency to focus on the CA 19-9 tumor markers, as it provides something "concrete", but it can be misleading as the rise can be related to other factors as well. But, then you know that already.
I am wishing for total success with the completed treatment and that you can put this behind you again.
Marion, you are exactly right and the doctor kept trying to drill that in my head. He told me several times to not get wrapped up in that CA 19-9 number. He said the permanent stent can cause a little inflamation that can influence the numbers. He implied that could be a new "normal" for Ron. More importantly, we need to watch the number and see if it continues to go up.
Dear Nancy, in one way it was so good to see you but in another way not so happy about the news. BUT, it sounds like this return was caught early. I am curious if any of the DOCs mentioned cyber knife? All Teddy had was some radiation to bring the tumor below 6cm. I am hoping this is just a bump in the road and I know you will keep us updated. Sending you both the best!
Good Morning Lainy,
No further treatment suggested at this time because there is nothing to see. We were told there has to be a tumor or mass for the cyber knife. CT scan shows no evidence of cancer and the narrowing of the bile duct has been corrected with stent. All doctors are in agreement to watch and wait now. Ron looks good and feels good so we are trying to be positive with this new bump in the road. I will post news on his next round of blood work. Thanks to all for caring...
Hello, I have not posted since last August. My husband Ron had been cancer free for seven years following resection and a few cancer cells decided to return. I noticed his eyes were slightly jaundiced and he was not due for yearly follow-up for six months. We immediately went to see his oncologist and a CT scan showed a slight narrowing in the bile duct but no cancer. All doctors thought it was scar tissue. Three biopsies later showed a very small amount of cancer cells, no tumors. A permanent stint was inserted through the bile duct for drainage. We were given the option of watch and wait or treating it. We opted to treat with chemo and six weeks of radiation. We are from Virginia but lived in New York for six weeks to undergo radiation at Sloan Kettering.
Blood work numbers, especially liver, continue to be a little out of normal range. CA-199 is 109 and for seven years it remained under 10. Doctors told us to not get consumed with the blood numbers because the CT scan continues to show no evidence of cancer. Doctors in Virginia and New York are still baffled as to why this cancer returned after seven years.
We go back in one month for follow-up blood work so I will keep you all posted. This site always gives me such comfort when I read all the posts. As the moderators have mentioned, it is not a journey anyone wants to take.
Just printed this card to keep with us at all times. What a great source of information. Thanks again for all the information this wonderful website provides.
Your story is quite unique as well. From the beginning all doctors thought Ron's narrowing of the bile duct was due to scar tissue since the CT scan was crystal clear. Do you have a permanent stent? What sort of maintenance do you have to do to keep it from becoming clogged? I need to do some research on this. We have an appointment next week with our gastro doctor to get his opinion.
Thanks for sharing your story...
Dear Nancy, I am so sorry to read what you both are going through. I can only tell you about my Teddy who had a Whipple surgery where they got clear margins and his returned to the same place 3 years later and they did radiation to shrink it followed by Cyber Knife. It then returned to the same place 2 years after the C.K. I have never heard that after 7 years, one is safe. We do have a few members at 10 years and I know one who is at 15 years. At least they have a plan for Ron so you dust yourselves off and get up the strength you had before and you will beat this again. Please keep us posted and I am wishing you more than the best! You never know how strong you are until "strong" is the only choice you have!
Thanks for your response. Did Teddy's cancer show up anywhere else when it returned to the original site?
Nancy.....you can count on our thoughts and prayer to come Ron's way. I am stunned to hear of the current developments seven years out from diagnoses, but hopeful that it can be conquered.
I am wondering, dear Nancy, had you consulted with an interventional radiologist as well?
Yes, we met with an interventional radiologist at Sloan Kettering. She is the one that inserted the permanent stent. Ironically, she was the one most surprised by the return after seven years. After the biopsy, she spent a long time with me convinced we had nothing to worry about. Pathology report came back the next day with a very few cancerous cells and we were all very surprised.
Thanks for your thoughts and prayers...
The last month has been quite a roller coaster. Two trips to Sloan Kettering and one local hospital stay in between because of high fevers due to infection. A drainage tube was inserted and apparently all of the bile ducts were not flowing properly because the drainage tube was slightly off. The plan of action was to get the bile flowing and they would insert a balloon into the bile duct to correct the area that was narrowed.
All doctors in Richmond and New York were certain that the cancer had not returned and the partial blockage was due to scar tissue because NOTHING showed on two CT scans and two biopsies showed nothing. Not to mention we were told this cancer does not return after seven years. Well I guess the third biopsy was the kicker because it showed a very few cancerous cells at the narrowing of the bile duct where the original resection occurred. There is no mass or tumor but the cells appear to be "angry". The cancer cells are localized. The drainage tube was removed and a permanent stent was inserted in place of the balloon. The fifty million dollar question now is how do we treat this. All doctors agree this is a "medical mystery and "medical marvel". We have been told when this cancer returns it always shows up somewhere else as a mass or tumor and usually within three years.
Our oncologist in New York was quite positive and said with it being localized and such a very small amount of microscopic cancer cells, chemo and radiation could possibly eradicate this. Our Virginia doctor was not as optimistic saying we have absolutely nothing to compare this with so we do not know how it will respond to treatment. Not even sure it is a recurrence or a new cancer. Both oncologist have made several conference calls to other major cancer hospitals and it continues to be a mystery. Ron is not a candidate for a second resection because he had a complete one seven years ago.
Ron is scheduled to start chemo on September 24 and his medicine will be:
Gemcitabine 1000 mg/m2 IV days 1 and 8
Cisplatin 25mg/m2 IV days 1 and 8
Duration: 21 days x 4 cycles
We will be returning to New York following his treatment to discuss radiation.
Certainly not the path we were expecting to travel seven years out but would appreciate any thoughts on the above. Please keep Ron in your positive thoughts and prayers. The people on this website are always in my prayers.
Sent Ron's test results to Sloan Kettering this week and he is being admitted on Sunday for stent insertion and further testing. We head out on a train from Virginia to New York early Sunday morning.
Please keep Ron in your prayers and positive thoughts.
Sorry I have not posted in a pretty long while. I do think about this website often and how helpful it was to me. My husband Ron has been cancer free for seven years following a resection with no bumps in the road. He has been quite tired lately so I talked him into going to our family doctor and they discovered he was jaundice. I had checked his eyes and it was not apparent to me. They sent him the same day for a CT scan and unfortunately it reads very similar to his first CT seven years ago stating "Interval development of intrahepatic biliary dilation: and "interval development of inflammatory changes in the anterior abdominal peritonel lining". His yearly check-up was scheduled for October 1, 2014. All of his bloodwork last October was great with a CA-199 score of 10. In nine months his liver blookwork is now sky high with a billrubin score of 9.7. Waiting to get his CA-199 score today. I expect it to be high.
We have an appointment Tuesday with gastro doctor for consultation and I assume followed by a ERCP to insert a stent. Hoping and praying this is an infection causing the inflamation but knowing this is a slim chance.
Just was wondering if anyone knows whether a second resection is possible, assuming the cancer is contained? Ron had his resection at Sloan Kettering by Dr. Jarnigan so I think we will contact him even before we meet with our gastro doctor here in Richmond.
Any thoughts would be greatly appreciated. HUGS!!
CONGRATULATIONS SUE!!!! I so look forward to your yearly update. My husband's check-up follows yours and both of you have been truly blessed. Live life to the fullest. Hugs!!
Music to my ears. I don't post often but log on frequently. Cheers to you and this wonderful milestone. May there be many more for you and for the other dear people on this website.
Nancy and Ron, wow!!!! Congrats!!!!!
Where did you go for treatment ?
We went to Memorial Sloan Kettering in New York.
Just wanted to share some wonderful news. My husband Ron just received a great report on his five year check up. He continues to be cancer free and healthy. He now will only be going for a yearly check-up. I still have back flashes when we were told by two very well renown medical hospitals to go home and get our finances in order because he had less than six months to live because his cancer was inoperable. Getting several opinions is a MUST!!! I keep everyone on this website in my prayers.
My husband Ron just went for his 5 year check-up and got a great report -- still cancer free. We now will only be going for a yearly check-up for bloodwork. His CA199 was 9. When he was first diagnosed, his score was 1,200. We truly feel blessed and are enjoying life to the fullest.
FABULOUS NEWS SUE -- Ron is right behind you with 4 1/2 years out cancer free. Hoping and praying that lots of others will be joining us.
It is so heart-warming to hear your good news!!!
Also to see that you are from Richmond. We used to live there and actually still have a house in Ginter Park. The weather must be so nice right now.
Did your husband seek treatment at VCU? I haven't heard whether or not they were doing liver resections/transplants there for Cholangiocarcinoma.
What a small world. We actually live in Midlothian just outside of Richmond. Ron had his surgery at Sloan Kettering in New York. The weather is absolutely beautiful here now. Since you lived in Richmond, you probably remember Maymont Park. We went there today to see all the beautiful flower gardens in bloom and walked around enjoying all the animals.
Such wonderful news for you and your husband, Nancy! Congratulations! Gives us all hope!!!! My Mayo doctor said after 5 years he wouldn't even need to see me anymore (I'm 2 years and 3 months post resection) - now that would be grand! Does Ron feel good....like before his cc journey began?
My very best wishes to you and Ron!
Thanks for the sweet post. Ron's doctor feels the same way about his 5 year check up. He did say he may continue to see him once a year but only to do blood work -- no scans would be needed. Ron feels and looks great. He will be 65 in May so I tell him it is time to start slowing down but he does not listen.
Just wanted to share some good news. My husband, Ron, just had his 4 1/2 year check up and his blood work and CT scan came back great. His Oncologist said he should be pretty much "out of the woods". He said if his cancer had not come back at this point, it probably would not -- music to our ears!!! I have flashbacks of a very well renown hospital telling us to go home and get our things in order because his tumor was inoperable and he had approximately six months to live. This is a true testament to the need to get second and third opinions. Our third opinion was the charm and surgery was a success. I do not post often buy I read the boards weekly and could not have made it through this journey without reading the wonderful wealth of information that this board provides -- THANKS!!
Posts found: 1 to 25 of 70
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