September 9, 2008 at 9:50 pm #22569karenSpectator
My heart and prayers go out to you. How very fast and devastating. I wanted to let you know in my research and readings that I had come across an article on how the river fluke in Asia can lay dormant in your system for up to 40 years before it causes CC problems. I had also read the rare instance where it could be contracted from Watercress that was infested with the same kind of parasite. I wish you every sucess in trying to get the VA into action. One of my husband’s doctors had asked if he was a Vietnam Vet in his trying to determine how the CC came about. Bless you and may the Lord lighten your heavy load.
KarenSeptember 9, 2008 at 9:03 pm #22568
Actually, some where along the line I did hear Korea mentioned in regard to this along with most Asian countries. As for the fish thing, I think if the food was washed in water containing the parasites & then was consumed it could be transferred in that way. I sort of feel the same way as you. Jim survived Viet Nam, but now years later could not survive this terrible disease!
If it is his Gall Bladder, I wonder how “unrelated” it actually is? You may want to question that.
I do plan to pursue this with the VA & hope more will also. Even if we don’t get anywhere with it, I think in time to come, unfortunately, after enough have died from this, they will have to pay attention & do the right thing. I guess at this point, I feel I have to do something & even if I don’t live long enough to benefit from it hopefully others in the future will. It is so sad that so many fought for their country & now their country is not their to fight for them & their families. The brother of a friend of mine passed away at the age of 52. Interestingly he was in the USO & was in several of those countries back then. Too many coinsidences. I guess all we can do is try, and also get the word out to others that could be affected by all of this.
DarlaSeptember 9, 2008 at 8:07 pm #22567lainySpectator
OK to all of you!!! NICE! I have asked about 4 times in the past about this. What about Korea??? Teddy will be 76 and survived Pork Chop Hill….but will he survive this??? I had heard about an Asian Fish some time ago that could be a bearer of CC>September 9, 2008 at 7:28 pm #22566vickeyMember
Darla and Patty,
I am questioning this very thing right now. My husband is a Viet Nam vet. I think that the more of us that file claims and appeals, the more they will stand up and pay attention. My husband is 58 and recently diagnosed with CC and a completely unrelated bladder cancer as well Good luck ladies.
VickeySeptember 8, 2008 at 1:21 pm #22565lisaSpectator
I think that you just had a fantastic idea that would help raise awareness for our disease. The theory that Vietnam Vets like your husband are coming down with cc from liver flukes that could have been picked up in the war should be publicized. These men should be screened regularly as you suggested.September 8, 2008 at 12:09 pm #22564
As we have always been self employed, as insurance rates escalated, we finally could no longer afford the cost. He is a VietNam Vet, so the past years has been using the VA. He was treated at the Zablocki Medical Center in Milwaukee. His first problem in July was an obstructed kidney for which they stented. He then developed a blood clot. He had every x ray scan etc. imaginable. The first tests showed nothing. His seconded CT showed Cysts on the liver. The third showed changes to abnormal lesions. It wasn’t until a PET Scan & a liver biopsy were done that he was finally diagnosed. It all went very fast. At that point we were told that without treatment he had up to 6 months. They considered trying Chemo but by this time he was to sick & too weak. The day before he died they told us he may have a few days, weeks, or up to a month. It all just developed so quickly. There was no time to understand or adjust to what was happening. My understanding is that in most cases by the time the cancer presents itself it is too late. It appears to be a silent killer working from within with very few symtoms for years. I have since learned that in his case this could possibly have come from the waters in Asian countries many of which he was in during the VietNam War. It is a parasite that is in the water that feeds off the inside of the bile ducts for years. As many as 30-40. They parasite is long gone, but the abnormal cells it has left than can become this horrible cancer. It is now presenting itself in a lot of men from that era that are now in thier 60’s-70’s. There are also some only in their 50’s. It also seems that our government could have given some warning & if screened yearly it could have been found earlier. If found in the gall bladder before spreading the bladder would have been removed & radiation done preventing the spread. I am not sure if any of this would have helped my husband & I now will never know. My understanding is that the government is really not stepping up to the plate on this or admitting it in most cases. As is & was the case with the many controversy’s with Agent Orange. None of this will bring back my husband, but there are so many unanswered questions. At this point I just have to try to be strong. I am hoping to do that with the help of the many good people here. I am also hoping I can bring some help & strength to others. Thank you for your kind words & support.
DarlaSeptember 8, 2008 at 3:25 am #22563tiapattyMember
I am so sorry to hear about the loss of your husband. Every time I visit this board I hope there are no new introductions because that means someone else is suffering from this awful disease.
Your story is heartbreaking, I posted elsewhere on here that after reading other people’s stories, I know we were lucky to have my mom for as long as we did. Seven weeks passes in the blink of an eye, especially when you are going from doctor to doctor. There is no way you can wrap your head around this disease in 1 week, it is not a fair fight.
I cannot believe that your husband went undiagnosed for 6 weeks, where was he being treated? I think you should look into whether or not they missed something.
PattySeptember 8, 2008 at 3:08 am #22562carol58Spectator
Darla, I’m so sorry about your husband Jim. I pray for strength and comfort for you and your family. Thank you for sharing all the valuable information. None of us know how long we have with our precious loved ones when dealing with this cancer. Take care of yourself.
CarolSeptember 8, 2008 at 1:16 am #22561
Thanks for all of your kind thoughts. Isn’t it amazing the a 2nd year med student nailed it the way she did when many doctors have no idea. Stay strong. You are fighting a good fight. As for rambling, I understand. I am doing that myself at times. All of what you said I am also thinking. God Bless You. My thoughts & prayers are with you.
FYI The Eagles & Take It To The Limit One More Time are one of my favorite groups & songs!September 8, 2008 at 1:01 am #22560jeffgMember
Thank You so much for your post. Your friend of your sister’s hit it on the nail head. I’m so sorry this relentless disease snuck up and and took your Husband so quickly. You are right though he is in a better place with eternal peace , no physical or mental pain. In my particular case it has been 9 1/2 years of a constant battle . Up and Down and all around. Lost track of how many different chemo regimens, Ct Scans, blood test, and I do remember two different bouts of radiation of the liver and a soft tissue tumor tickling my spinal roots, except it doesn’t tickle. Well, They say there is not much more to they can do. I stopped chemo for a while to see what it felt like to be human again. Feels good. Don’t know my next course of action or if I decide to do anymore. It would have to be a trial I think or something really novel. I should be thanking the God for letting me hang around for so long ,and I do. My family have been quite supportive, but how much longer am I suppose to pull them through this torture.
I’m sorry Darla ,I went on rambling not knowing really what I’m trying to say. I look at your situation and ask why? and then I look at my situation and ask the same question. As you read through the many post of individuals who have and still are fighting this nasty disease, you’ll see so many variances of when,where, different treatments etc. world wide. This site has kinda been my life for quite sometime. As a moderator I try my best to offer suggestion and keep the questions and answers going and many members, patients and caregivers on this site are so warm and heart -caring people it’s amazing. They have supported each other time and time again, usually from first hand experience. They are the most unselfish and giving group of individuals ever. I’m sure they will be reading and sharing with you in the near future. The weekends are usually a little slow on responses.
Now I have to apologize for my post being so long. So much to talk about and get off your mind on some days. Feel free to ask any questions or whatever, when your ready. With things going as quick as they did, I can imagine your mind is still spinning. Again, Thank You So much for sharing and may God’s love and support follow you and your family.
Jeff G.September 8, 2008 at 12:10 am #22559
Thank you all for your kind thoughts. My journey started the middle of July of this year. My husband was in & out of the ER 5 times before his first hospitalization. They thought it was just a kidney problem & put in a stent. He then went back in with a blood clot. Blood thinners were not working & his blood test were really strange. He then went back in again with more blood clots even tho’ he was on the thinners & they put in a filter to keep any more from getting to his lungs. They still had no idea of what was going on, however, were now suspecting possible a type of cancer was causing all the strange symptoms & reactions he was having. The stent also was not working so at that point they had to put in a tube to one kidney. He became weaker & more fatigued, had no appetite & when he came home one more time the last week of August he was really trying to eat etc. & started vomiting. He was home from Friday night until Sunday afternoon at which time I had to take him back to the hospital. He had every test, scan etc. imaginable. Nothing definitive was found. They finally took a biopsy of his liver as each test showed rapid changes from normal to cysts to leisons. That Tuesday they also did a PET scan which finally determined (along with the results of the biopsy) that he had this terrible cancer. At that point we were told he had atleast 6 months even without treatment, however they were still considering Chemo to atleast try to stop it from going further. He then started to become so weak & run down from not being able to eat etc. that they felt Chemo would not help as it would make him even sicker. They considered a feeding tube or port, but that too would have possibly been too hard on him. By the following Monday they told us that he may only have a few days, weeks or a month at the most. He died at 9AM the next morning. Only one week after they had the positive diagnosis. I spent that last week at his side & one of our sons spent the last night there with us. One of us at each side of the bed. It was a very intense 7 weeks & in the end there was nothing anyone could do. Atleast he is now in a better place & at peace. Watching the progression of this terrible disease & not knowing what was happening was so very hard on all of us. Now we are left to try to pick up the pieces. I will add what a friend of my sister’s who is a 2nd year med student sent us:
very sorry to hear about your brother in law
>> cholangiocarcinoma is a cancer of the bile ducts- vessels that drain
>> bile into and out of the liver. it is a weird tumor in that it is
>> very silent until it is large enough to impede on other organs around
>> it (ie. liver, gallbladder, pancrease, etc). by the time it
>> manifests itself in symptoms such as turning yellow, abdominal pain,
>> itching, vomting, nausea, and things like that, it is often spread to
>> a point where it is not able to be resectable by sugery, which is the
>> only definitive cure. thus, a lot of the management is by palliative
>> measures and pain management because of the late diagnosis.
>> there is a higher prevalence in asia due to some kind of endemic
>> chronic infection associated with liver flukes. other risks factors
>> include chronic hepatitis, HIV and ulcerative colitis (a form of IBS).
>> it is hard to pinpoint any one of these down because many people with
>> the above don’t develop the cancer. the fact that he had a parasitic
>> infection may have contributed to the development of the cancer, but i
>> would not say that it is the sole cause. the majority of people
>> diagnosed with cholangiocarcinoma have no known risk factors.
>> as a family, i would make sure he is in sufficient pain control- if
>> this means very high doses of pain meds, that is ok. if he is still
>> lucid, he will eventually want to stop eating and stop drinking
>> fluids- this is alarming because it is against our thoughts that food
>> = comfort but this is normal and very characteristic of the final
>> stages of death. hydrate the mouth with small ice chips if he cannot
>> drink fluids. in the last days, he may spike a fever. this is also
>> normal. there may be secretions in the mouth that towards the end
>> will accumulate because the swallowing reflex is diminished and this
>> will make a rattling noise. these secretions can be sucked out of the
>> mouth if necessary.
>> i know this is all hard to hear but i wanted to write it out in case
>> the doctors didn’t say anything about what to expect.
I know this is harsh & hard to read, but I wish I had know all of this as his illness progressed. This is exactly how it went. It would have made it a little easier to understand. Hopefully it will help others. Sorry this post is so long, but hopefully it will help others to try understand & cope with this horrifying disease. Again, Thanks to all of you here & I am so gratefully to have found you.
DarlaSeptember 7, 2008 at 8:38 pm #22558paulineMember
I am so sorry to hear about your husband and reading your post I am crying again for all of us who are going through such terrible times. My husband, Anthony died on 30th July age 64. Like your husband he was doing really well until the last 8 weeks or so. We went to Italy in the middle of May and he was lifting the suitcases onto the car park bus, managing the long walk at the airport – really normal. We came back and he started to get pain and , as you say, it just progressed from there so rapidly. I am still in shock and traumatised but, like you I hope to be helpful to others. I have started writing letters to the hospital re delays and things that weren’t good enough in the hope that I can change something for others.
I just want you to know that I am here and I understand and I am thinking of you.
Pauline ( London UK )September 7, 2008 at 6:35 pm #22557sherrigMember
I am so sorry to hear about your husband. I just can’t believe it happend so fast. My stepdad has been fighting cc for almost 3 years and has gotten really bad really fast. I just wondered where all was his cancer and what all happend. I lost my dad to colon cancer 10 years ago and this is just so not fair to my mom. This wonderful man literally gave my mom her life back and gave her back to us. I just hope that we are not out of options just yet but he has just gone from playing golf and running around all of the time a month ago to not being able to eat, sleeps a lot and is in a lot of pain. And now is starting to have trouble breathing. Could you share a bit more of your husband’s story if you can. And again, I really am sorry about your loss.
SherriDarla wrote:My husband Jim passed away last week Tuesday 9/02/08 at the age of 62. He was a healthy normal functioning man 7 weeks ago. The past 2 months have been so intense. Full of questions & promises. Watching the progression of this terrible, disease that so quickly claimed his life was horrifying. Everything I have been reading on this site is exactly what we have been through & more. Finding this site has answered a lot of unanswered questions for me & has given me some comfort. Right now I am feeling empty & hopeless. I was only 15 when we first met. We had 45 wonderful years together which I am grateful for, but I guess I selfishly wanted a lot more. Now all I have left is the memories. As time goes on, hopefully I can be of some help & comfort to others who come here seeking it. I am so glad I have found this site & hope that others in our situation will be lead here also. Thanks to all of you for being here.
DarlaSeptember 7, 2008 at 2:57 pm #22556lisaSpectator
Darla, I’m so sorry for your loss. Please feel free to come here anytime and share. There are wonderful people here who really care and understand what you are going through.
I often think that this disease is harder on the loved ones than on the patients. I have cc, and can’t imagine what it is like to watch a loved one suffer with this disease as you did with your beloved husband.
God bless you,
LisaSeptember 7, 2008 at 2:37 pm #22555jmoneypennyMember
My sincere condolences on the loss of your husband – 45 years, that’s amazing! I can’t even imagine such a loss. Please know that we are here for you if you need to talk about it.
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