January 10, 2010 at 11:51 pm #34378
Darla, I have sent you an email. MargaretJanuary 10, 2010 at 8:11 pm #34377
Jim passed away on Sept 2, 2008. 2 months after his 62nd birthday. I found this site a few days later and am so greatful for all the support I have gotten here. I was almost hoping you wouldn’t ask, but since you have, I will try to explain. Please keep in mind that every case is different and there is always hope.
In Jim’s case things went very quickly, which as you have probably found from reading on the site, is not always the case. There really is no rhyme or reason to this disease and it seems to treat everyone differently. He appeared to be perfectly healthy until around the middle of July when his first symptoms appeared. He had every test imagineable and some more than once, but the problem was not found. As his symptoms worsened & multiplied, cancer was suspected. A needle biopsy was done and also a Pet Scan. That was when we were told it was CC. That was a week before he passed. For us it was less than 2 months from the first symptoms to when he passed away. For some it is shorter and for many it is longer. Some on this site have lived with it for several years and there are some being treated successfully. In our case the cancer had progressed too far before we were even aware that it was there. This type of cancer seems to be very slow growing, but also many times does not show any symptoms until it is too late. I hope I have exlaining this so that you will not give up hope. Please “keep the faith” and keep trying, no one knows for sure how things will go.
Please feel free to email me by clicking on e-mail on the left side of the screen under my name if you have questions of just need someone to talk to.
I am thinking of you both and will keep you in my thoughts and prayers, hoping for the best.
With Love & Hugs,
DarlaJanuary 10, 2010 at 5:57 pm #34376
I know where Plymouth is, it’s not too far from Green Bay! Based on your post, I am assuming that Jim has passed? If so, I’m so very sorry for you and you are right “one day at a time”. If Jim has passed, how long between diagnosis and his passing? I’m trying to get an estimate of how much time Tom really has, given his high bilirubin level and his inoperable tumor. I’m trying to ‘Keep the faith” but also trying to be realistic.
MargaretJanuary 10, 2010 at 3:25 am #34375
I’m in Plymouth which is about half way between Sheboygan & Fond du Lac. My husband was 62 and had been at the Milwaukee VA also. I felt such a connection to you when I read your story. Jim & I met when I was 15 & he was 17. We were together for over 45 years. I do know what you are going through. You have found the best place to be for help, strength and support. Everyone here is so caring and they all truely understand. I am so glad you found your way here.
DarlaJanuary 10, 2010 at 3:03 am #34374
Where in Wisconsin are you? Thanks for your thoughts and concern. This is a wonderful forum and if nothing else is great for information and for ‘peace of mind’ for us caregivers of our loved ones who have this dreadful cancer.
MargaretJanuary 10, 2010 at 2:57 am #34373
My thoughts and prayers are with you & Tom.
DarlaJanuary 10, 2010 at 2:14 am #34372
I have been doing a lot of research and cyber knife was one of the things that I did disucss with the doctors. However, with that being said, the tumor is wrapped around not only the confluence of the bile duct tree, but also the main blood vessel of the remaining right lobe of the liver, therefore that is not even an option that they would consider. It would be too dangerous and fatal per what I have been told, given that the main blood vessel is involved.
We have discussed a liver transplant bit given his other health issues, he would not survive that operation, and liver cancer patients are not given liver transplants because liver cancer often recurres and can metastities (sp).
I also found a lot of other procedures but most of what I discovered is something that they don’t do here in Green Bay, or it’s too risky, not enough data, etc. That and given the ‘placement’ of the tumor with the blood vessel involvement, it’s just too risky.
Tom is doing a lot of sleeping these days and all I’m doing now is praying that he does not suffer, praying that the radiation shrinks the tumor enough so that they can get a stent in to relieve the high bilirubin levels that he has.
Thanks for your thoughts and concerns.
MargaretJanuary 9, 2010 at 11:40 pm #34371lainyParticipant
Margaret, I just had an idea. Has anyone mentioned Cyber Knife to you? It is a type of laser and the tumor has to be under 7CM. Teddy had it last year. I am wondering if it could be considered. 3 – 5 days of treatment and its cooked!!!
Not much side effects either.January 9, 2010 at 11:13 pm #34370
Thanks to everyone for their comments/advice. We have considered Mayo, however it’s just too far away and I have to work else we have nothing to live on and I won’t let him be there by himself. He was in Milwaukee for three weeks and I was there with him the entire time.
Part of the current issue is that with the bile duct blocked by the tumor they can’t give him chemo because he will become toxic and that alone will kill him.
Until the radiation shrinks the tumor we have to trust that his angel is watching over him..once they get a pinhole, Dr. Dempsey will be able to get a long enough stent in via the chest wall.
MargaretJanuary 9, 2010 at 5:29 pm #34369gavinModerator
Welcome to the site, although I am sorry that you have to be here. That is some journey that you and Tom have been on and I thank you for sharing it with us. I hope you will keep coming back here as you will get lots of support from all of us.
You seem to have a very positive attitude and that certainly helps in this fight. And I hope indeed that you keep kicking this big time!
My best wishes to you and Tom.
GavinJanuary 9, 2010 at 3:24 pm #34368
What a journey. I am thinking of you and hoping for the best for both of you and your family. Keep Kicking!!!!
DarlaJanuary 9, 2010 at 1:26 pm #34367lainyParticipant
Hello Margaret and welcome to our “Family”. We are originally from Wisconsin but now live in Phoenix. What a story, you have both really been through it all.
When Teddy was diagnosed we were in Milwaukee and everything happened so fast we had no time to think. We lucked out with the best surgeon Dr. Lyle Henry at Columbia/St. Marys. He performed a Whipple and everything went well for that, the recuperation period was nuts. I would recommend him to anyone. The other suggestion I would make is Mayo Clinic in Rochester MN.
They are at the top in the field of CC. Gather all your reports from the doctors and Fax them over to Mayo and they will tell you what they think. Quite a few of the top hospitals will do that. I don’t understand if a hospital/doctor is treating CC how they cannot have all the needed sizes for stenting. When Teddy jaundiced I told him I don’t like him in yellow and we were on our way!
You will find the smartest most wonderful people on this Board so feel comfortable to visit often and vent or ask away. Please keep us posted.January 9, 2010 at 11:39 am #34366lalupesParticipant
Welcome Margaret – this is a wonderful family you’ve found & I know you’ll get loads of help & support here.
KEEP KICKING!!!! Love to you & your family.
JuliaJanuary 9, 2010 at 8:54 am #34365magicParticipant
Margaret,what a stressful time you have had and how poignant for you all those elements of lost years and coming together.It absolutely doesnt seem fair,but I sense you have had wonderful times together and you will make the most of life.It is a bit of a potluck scenario the treatment for cc.works for some and not others.
We will support you both here and good luck as you embark on further treatments JanetJanuary 9, 2010 at 5:08 am #3069
My husband Tom was diagnosed with Cholangiocarcinoma in March 2008. On June 16, 2008 (after walking our youngest daughter down the aisle at her wedding on May 17) he underwent a left lobe liver resection. The doctors removed about 3/4 of his liver. He developed a bile leak and had an external drain tube for 7 1/2 months. He also had a 2nd drain tube for about 3 months because he developed a pocket of bile behind the liver.
In Feb of 2009, after the bile leak stopped, the doctors kept telling him he was cancer free. No chemo, no radiation. We had a wonderful spring and summer and fall in 2009. We did our annual fishing trip to Canada in September and things were looking much brighter. Tom went deer hunting on the October handicapped deer hunt in Wisconsin and got an 8 point buck, a doe and bambie (need I say more on that?)
On Thanksgiving day, 2009 I thought he looked slightly ‘yellow’, but poo-pooed it telling myself that I was looking for a worse case scenario…Two days later when we went for breakfast with friends, I asked my girlfriend if he looked yellow to her. She agreed. Later that day, I took him to the ER, blood work was done, and a CTSCAN revealed a 2.5cm tumor in the remaining right biliary tree.
A visit to the VA Hospital in Iron Mountain Michigan on the following Monday where he was told to ‘go home and get things in order’ and ‘6 months’. That visit was followed up on Tuesday to a visit to the ER at Marshfield Clinic in Marshfield Wisconsin (That was the fastest way I could think of to get into see a oncologist at the Marshfield Clinic). Two days later we were back at Marshfield to see the oncologist. She agreed that the tumor was inoperable and that we could try chemo and radiation… Tom’s bilibrubin level at this time was about 7.
We did a follow up appointment with the doctor that performed his original left liver lobe resection, at the VA Hospital in Milwaukee, Wisconsin. She did agreed that because of were the tumor was (right smack in the middle of the Biliary tree, involving the main interhepatic blood vessel and the bile ducts that it was inoperable. She disagreed with the oncologist at the Iron Mountain VA hospital however. She said that with Tom’s ‘fight’ and with my ‘fight’ if anyone was a candidate for radiation and chemo that Tom was it.
Because of the external drains that Tom had after his original surgery, he was very against having another drain tube. However his bilirubin level was climbing higher, and she strongly suggested that a drain or a stent was necessary.
Back to Green Bay to the Vince Lombardi Cancer Center at BayCare Aurora Hopsital. Dr. Ravi Kondavitti attempted an ERCP to stent the liver bile duct but he did not have a long enough stent to do the stenting. During and ERCP the longest stent that they can use is a 13cm stent (Because of all the twist and turns a longer stent will kink). The tumore is 14cm and in order to stent it they need about a 16cm stent.
Two days later Dr. Dempsey attempted to place a stent by entering the liver from the outside chest wall. The bile ducts were so ‘balloned’ with bile that he could not see a clear path. An external drain was placed. Two days later another attempt to place a stent was made. It was a no go. Three days later, a dual procedure was attempted, Dr. Kondavitti went in via the ERCP method with his wire, and Dr. Dempsey went in through the chest wall. Their wires were about 1/2 inch apart. Again a no go. Dr. Kondavitti’s wire went past the tumor but into a very small bile duct to the back of the liver where a stent would do no good. Bilibrubin level was now up to 13.
Radiation treatment started. Bilirubin still climbing. After three weeks of radiation, the decision to replace the drain with a larger drain tube was made. Dr. Dempsey again tries to stent the liver, but can’t get past the tumor. The larger drain is put into place. Bilirubin is 24.7 (three days ago)…
I think we need a miracle. Lucky thing is that Tom has no itching, no brain confusion. His only side effect is that he is loosing weight and he has swelling of his feet. He is still eating fairly well, still has a sense of humor and still loves me!
I’m not certain how much longer he can go on, but we’re trying to KICK THIS CANCER!
Tom is 62 years young. We were sweethearts way back when I was 17 and he was 21. We both went our seperate ways, married other people and found each other again and were married on Feb 11, 2001. We have six children between the two of us and 13 grandchildren in total. My youngest daughter (the one he walked down the aisle at her wedding) had a permature baby boy who weighed in at 2 lbs 9.2 ounces is my husbands little namesake and buddy. His name is Thomas after his Papa!
I’m hoping to get some inspiration from others who are fighting this terrible evil type of cancer.
God go with all of you!
Keep KICKIN that Cancer.
Margaret, Tom’s cargiver and loving wife.
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