mlepp0416
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Snezzie:
My husband Tom had a successful liver resection in June 2008. All his doctors at that time said no chemo was necessary because he had 1 in clear margins. However in Nov 09 he started turning yellow, he had a reoccurance with a new 2.5cm tumor blocking the remaining right biliary tree. It is inoperable. All his new doctors now say that if he’d had chemo after the resection he most likely would not be in the position he is in today. He has now had 28 radiation treatements followed by chemo (Xeloda) and the tumor is dead and he is considered to be in remission.
The good thing about Xeloda is that so far he has not lost any hair. (He said he’s grown that hair for 63 years and he’s kind of attached to it!) So he’s happy about that. The Xeloda does not make him sick, but after his 2 week on, 1 week off regeime, he’s pretty tired after the two weeks on.
And the Xeloda that he is on is pill form, so he does not have to travel to get his chemo and that works for us.
If I had it to do over again, I would have insisted on some form of chemo at the get go….
Go with God and KEEP KICKIN’ THAT cancer.
Margaret (My husband and cholangiocarcinoma)
The first time I saw this post, I didn’t post what I or Tom hated about this cancer because I thought it would be too negative. But now that I have seen others posts….
I hate that this cancer has taken my once vibrant and fun loving robust husband and turned him into the ‘thin’ man who is no longer capable of eating the food that he loves, no longer able to garden like he used to be able to do.
I hate medical bills and knowing that starting July 1st we have to meet a $3,000 deductible and then another $3,000 out of pocket, but I’m also grateful that we do have health insurance.
I hate the external drain bag that collects the bile and I hate flushing it every day and changing the bandage. I hate the hole in Tom’s side where the tube goes into the liver. I hate the stitches that hold the tube in place.
I hate 4×4 gauze pads, Tegafilm, 10cc flushes and bile in general. Bile should be something that we aren’t aware of and stay where it belongs.
I hate knowing that Tom and I will not grow old together because at some time this cancer will take him away from me, from our children, our grandchildren. I hate it that his little namesake Tommy will probably not grow up having Grandpa teach him how to fish, grow flowers, talk about life in general. But I love that my daughter named her firstborn after her stepfather!
Tom hates: CC, external drain, ERCP’s, Flushing of the drain and bandage changes. He hates that he looks 20 years older than he is. He hates that he can’t wear jeans very often becuase the seams wear on his tail bone (He has no meat on his butt)
Tom hates the thought that after only 9 short years of being married to me that he may be taken away long before his time.
He hates that now that he has reunited with his first born daughter, he will have to leave her again because of CC.
He hates knowing that he has a death sentence because of CC but understands that we all have to die (and pay taxes!) but would rather die not knowing it was coming.
He hates the stares that he gets from people when we go to the store. He hates that shocked look on friends faces when they see him if they haven’t seem him in awhile.
He hates not being able to sleep on his left side.
He hates feeling sick.
There I did it!
Margaret and Tom
Carlos: I have just read all the posts about your mom. I’m very happy that she decided to go with the Chemo. My husband Tom was able to have a liver resection in June 2008. His team of doctors decided to not give him chemo after his successful liver resection (where they removed about 80% of his liver) because he had clean margins. My husband is now 63 years old and he was 61 when diagnosed.
In November 2009 he started turning yellow. An emergency room visit and a ctscan revealed a new 2.5cm tumor in the remaining right biliary tree. That tumor is inoperable. His doctors told him to go home and make preparations and gave him a 6 month diagnosis. We did not accept that and sought 2nd, 3rd and 4th opinoins. The concenses was that the tumor was inoperable, but unlike his first oncologist, all the others agreed that radiation and chemo were in order and could help his situation.
After 28 radiation treatments, the tumor is dead, and he is continuing with chemotherapy (Xeloda) pill form 5 pills 2x a day. Unfortunately because even though the tumor is dead it is still blocking the bile duct (as scar tissue) and the doctors are unable to place an internal stent to allow the bile to flow into the intestines. Some of the bile is getting through but not enough because of his yellow color, so they inserted an external drain through his side into his liver to drain off some of the bile. (It drains into a bag) This procedure has allowed him to look more normal in color. We travel to Mayo in one week to have them try to put an internal stent into the liver. (Mayo is one of the best hospitals in the US and has a lot of experience with CC patients)
My husband’s new doctors are now telling us that if he had had chemo after his successful resection he may not be in the position he is in today. We are now in the 7th month of his 6 month prognosis, so that goes to show that NO ONE has an expiration date stamped on their butt or on the bottoms of their feet.
Go with God and prayers from Green Bay Wisconsin coming your Mom’s way.
KEEP KICKIN’ THAT cancer.
Margaret (My husband and Cholangiocarcinoma)
Devoncat:
My husband Tom is sporting 5 tattos, and yes, they are little ink dots! They do that once they ‘map’ you for radiation. After he had his resection we were talking about getting his scar (mercedes incision) turned into a railroad via a tatto, with a train tattoed on it (but we never did)
Best of luck to you with the radiation treatments! Tom also has a ‘radiation’ burn on his back that just looks like a large bruise. When I was helping him shower and I saw that, I was very concerned that he’d fallen and that ‘bruise’ was the result. We had the radiation oncologist look at it and he told us it was a radiation burn. No biggie, but keep that in mind if you end up with something that looks like a bruise.
Go with God and KEEP KICKIN’ THAT cancer
Margaret
Rick:
My heart goes out to you. What can I say except that perhaps you need to find another radiologist or at least request that this particular radiologist does NOT get to read your scans. I just recommended that my daugher (who is an RN) take her young 3 yr old son to Children’s Hospital in Milwaukee for a 2nd opinoin because I personally do not trust the radiologists here in Green Bay. This was after a local radiologist read one of my husbands scans and reported that the “Gallbladder is grossly intact and no abnormalities seen”, now mind you that my husband had his gallbladder removed on June 16th, 2008. So what the heck was that radiologist lookin at? It certainly was NOT his gallbladder because he does not have one!
In Tom’s case missing that the gallbladder was not there was not such a big deal, but missing a 4cm tumor, that is unacceptable for sure!
Have they discussed radiation for the tumor? Radiation killed Tom’s inoperable tumor after 28 treatments, now he is following up with Chemo. But, keep this in mind, if the tumor is blocking a bile duct, you may want to discuss having the doctors put an internal stent if before radiation (if possible) because if radiation kills the tumor, it turns into scar tissue and getting an internal stent in afterwards may not be possible (as in Tom’s case). Or at least the local doctors have not been able to get a stent in. One more go round at Mayo coming up for Tom and if they are unable to get the stent in then we have to accept that it simply cannot be done.
Best of wishes coming your way that they find something to do for your situation.
Go with God and KEEP KICKIN’ THAT cancer.
Margaret
Laura:
Let me welcome the others in welcoming you to this site. I’m so glad that you registered on this forum. You will find lots of friends and will get lots of support. Everyone on this site is so wonderful. You will get a lot of useful information, just from reading the posts.My husband Tom has been fortunate that he has never experienced the swelling of the abdomen, so he is lucky in that respect. He has however experienced swelling of his feet, they got so large that he couldn’t hardly walk. Found out later that he is allergic to hydrocodone. So we avoid that painkiller.
Prayers are coming your Mom’s way from Wisconsin.
Go with God and KEEP KICKIN’ THAT cancer.
Margaret
Hi Jacque:
My former Brother in law had his spleen removed about 28 years ago and has not had any issues at all.
So sorry to hear of your mom’s CC. And welcome to the site that no one really wants to join. Please come back often, as you will find a lot of excellent information on this site.
As my husband’s caretaker, I’ve learned over the past 2 1/2 years to never take ‘no’ for an answer. If you don’t like what you are hearing from your Mom’s doctors, look for another doctor, get second and third opinoins and above all find a doctor who is familiar with Cholangiocarcinoma.
Mayo Clinic has many doctors who are well versed with Cholangiocarcinoma. My husband Tom is headed back to Mayo as the doctor here in Green Bay Wisconsin are unable to get a stent into his liver and he currently has an external drain because the bile can’t get past his inoperable tumor in the remaining bile duct. The Mayo doctors are pretty sure that after reviewing all his scans (pre tumor and post tumor) that they can get an internal stent in place.
After Tom was given a 6 month prognosis, we got 2nd, 3rd and 4th opinoins and decided to go for broke with Radiation and Chemo. We are at the 6 month mark right now, and Tom is still going strong. The Radiation and chemo (Xleoda) have ‘killed’ the tumor and all of his numbers are coming down drastically. Even his tumor markers and his bilirubin levels and the most stubborn one of all, his Alk Phosphate which has stubbornly stayed at about 1,500 is now down to under 1,000. Good news all the way.
Keep the faith, go with God and KEEP KICKIN’ THAT cancer.
Margaret (My husband and Cholangiocarcinoma)
FINALLY was able to start Working At Home!!!! It’s awesome and now I no longer have to worrry about Tom being home alone all day. Had to go a buy a new office chair this evening as only 8 hours in my old chair and I felt like an ‘old lady’ when I got up from that chair after work ended.
New Chair = $129.00 before tax, spending the day working at home = Priceless
No more worry about Tom being home alone day in and day out.
Go with God and KEEP KICKIN’ THAT cancer!
Margaret
Hi Stacy:
My husband Tom was never in Vietnam so we know that he did not contract Cholangiocarcinoma there. However, he was stationed in Germany in the motor pool. He has put in a claim to the VA for service connected disability based on his exposure to Chromium 6, a PCB, which has been proved to cause liver cancer. The VA used green army paint which contained Chromium 6 and just recently in about 2006 switched their paint to a paint that contains Chromium 3 which is safer that Chromium 6 based paint.
We do not have an answer to his VA claim as of yet, but just recently had to travel to Milwaukee and meet with a ‘independent’ doctor hired by the VA to go over the claim and make a decision. I have read a lot of the denials on the VA website, which posts all the claims and the decisions. The one common theme that I did pick up on was that most (if not all) the claims for service connection have been filed by the widows of the Veteran, not by the actual Veteran. In Tom’s case, he is the actual Veteran filing the claim and hopefully that will have some bearing on the decision.
We plan to appeal if it is turned down becuase there is NO HISTORY of anyone in his family ever having cancer. If the VA can give service connected disablity for type 2 diabetes, they really need to be looking at all the Veterans who are coming down with Cholangiocarcinoma and start recognizing this disease as service connected, whether it comes from the Rice Paddies, the fish, the water in Asia, or from PCB’s such as Chromium 6. I have heard from other Veterans that have fought to get service connected disabilities that sometimes you have to appeal it three and four times before they will approve it.
The funniest part of all the paperwork that has to be filled out is the question “Did you have any symptoms when you left the service”. Of course not because exposure to the Aisan Fish Fluke or exposure to PCB’s that cause cancer can take 40 to 60 years to manifest itself and start causing problems.
All the literature that we sent along with Tom’s VA claim showed those stats over and over again. It does not, however, seem to matter to the VA, since there was no evidence of the Cholangiocarcinoma when the Veteran ‘left the service’ that seems to be the one theme that they are using to deny these claims. I feel that if the actual Veteran’s start putting in these claims (while they are still alive) that some of the rulings would turn out differently. However, in some instances, like Darla’s husband Jim, there simply isn’t enough time between diagnosis and the death of the Veteran to even begin to file for a service connection! As unfortunate as that is, the widows of these Veterans need to continue to appeal and appeal again if necessary.
I also believe that there are many, many people who belive that Cholangioncarcinoma is ONLY caused by the Asian Liver Fluke, and that is incorrect. PCB’s and exposure to them also causes Cholangiocarcinoma.
Go with God and KEEP KICKIN’ THAT cancer.
Margaret (My husband and Cholangiocarcinoma)
All:
WE HAVE HEARD BACK FROM MAYO and we are heading back there for surgery on the 14th of June! (almost two years to the day from Tom’s original liver resection, how ironic is that?)
Dr. Edwards from Mayo clinic is VERY positive that he will now be able to get the internal stent into the liver! Please everyone say a little prayer that he is successful!
And, just thought that I’d add this as a side note. Tom mentioned the other day that his arms were really sore and he is wondering why….I pointed out to him that he ACTUALLY HAS MUSCLES in his forearms that I can see, rather than flabby flesh covered bones. All that working in the dirt planting flowers is ‘bulking’ up his muscles and that is why his arms are sore. I think I’m going out to the store and buying some more flowers for him to plant cause if that is what it takes, I’m doing it!
Thanks to everyone for all the well wishes since I have joined this site. You don’t know how much your moral support means to both Tom and I. I could NOT do it without each and every one of you.
God Bless!
KEEP KICKIN’ THAT cancer.
Margaret
Kristin:
My husband Tom has had an external drain tube with a bag since Dec ’09. He too has some leakage around the site where the drain tube enters the body. I clean it daily and wash it with antiseptic and rebandage it. I also have to flush the tube daily and when I do that, the bandage instantly gets soaked with a mixture of bile and saline soultion. Therefore I flush the tube, then change the bandage.
With Tom they had to modify the tube (be drilling extra holes in the part of the drain tube that is inside his liver. The modified tube works well for him. A few weeks back, Mayo Clinic did a tube exchange and did not modify the tube and within 2 weeks, his bile was thick and sludgy and putrid smelling. The doc in Green Bay, exchanged the tube for a modified one and since then no issues.
Are your doctors having you flush the drain tube? If so, ask they why not. The flushing helps keeps the drain holes in the tube open. Be diligent about changing the bandage when you notice that it has started turning color from the bile. You don’t want to leave the bile on the skin. Tom had two external drain tubes initially for 7 1/2 months and now with this new drain tube he’s had it 5 months and to date because of being diligent about changing the bandage he has not had any problems with his skin breaking down. Another thing is that if there is a lot of leakage of the bile around the insertion hole, they may have to go with a larger drain tube (that is what they had to do with Tom when his started leaking a lot around the drain)
Good luck! Feel free to ask me any questions on the external drain tube and bag – I have lots of knowledge since I have been caring for Toms for over a year now!
Go with God and KEEP KICKIN’ THAT cancer.
Margaret
Hi Gail:
As others have said, welcome! Please discuss Chemo with your husbands doctors. My husband also had clear margins after his resection in June 2008 and his doctors said no chemo was necessary. Knowing what I know now I only wish we had insisted on Chemo. My husband Tom presented with a new tumor in Nov ’09 and the new tumor is inoperable, he has been given a 6 month prognosis. All his new doctors now say that if he would have had chemo after the resection he may not be in the position he is in today. Fortunatly, his new doctors did give him radiation and chemo to shrink/kill the new tumor. He has an external drain to relieve the bilirubin levels (unable to place a internal stent) and we are at the 6 month mark (in 2 weeks) and we feel he will beat that 6 months).
So please, please insist on your husband getting at least a few rounds of chemo to err on the side of caution!
Go with God and KEEP KICKIN’ THAT cancer
Margaret (My husband and Cholangiocarcinoma)
Just thought it was time to give everyone an update on Tom. He continues with the external drain to keep his bilirubin level under control. Currently it is about 6.3 or so. He’s already had to have the drain that Mayo put in exchanged because the bile started to smell (bile should NOT have a strong putrid odor, if there is any odor it should be a slightly sweet smell). And the Mayo doctor did not add any extra holes to the drain tube (which apparently he needs to have else the drain gets clogged up within a few weeks)
We still have not heard back from Mayo since we sent all his scans, so we are still in a holding pattern. Tom has started Physical Therapy to help build his muscles and get his strength back.
He works out in the yard every day, planting TONS of flowers. He said he wants to have the yard all beautiful and wants to be able to enjoy it before he leaves. He’s got great plans and I believe that he will complete them too, including all the landscaping that he has planned. So far he’s completed the flower garden around the new deck.
We did complete the paperwork for the Veteran’s to see if we can get his disability rating switched from Non-Service connected to Service connected due to his Cholangiocarcinoma and have just heard back from the VA. We have to be in Milwaukee at 11:00 am this coming Saturday for them to review his case and for them to run whatever tests they feel they need. The more research that I do, the more evidence I’m getting that his exposure to PCB’s is the culprit. The Green Army paint that Tom used for almost three years during his army stint in the Motor Pool contained Chromium-6 which is highly toxic to the liver and causes bile duct cancer. In 2003 the Army switched their Green Army Paint to a Chromium-3 based paint which is ‘safer’ than the paint with Chromium-6.
It would be interesting to do a study on how many people with Cholangiocarcinoma were exposed to PCB’s and espically Chromium-6. It had been thought that Cholangiocarcinoma was only caused by the the ‘Asian Fluke’ but there is a lot of evidence out there showing that PCB’s also cause both liver cancer and bile duct cancer.
We are holding it together here at our end and hope that each of you, whether you are a Cholangiocarcinoma Survivor or a Caretaker of a Cholangiocarcinoma survivor continue to beat the odds and help spread the word about this type of cancer.
Go with God and KEEP KICKIN’ THAT cancer.
Margaret and Tom
St. Germain:
Welcome to the site that no one really wants to join, myself included. With that being said, this is the best site on the internet that I have found to date where one can get good, honest information and real life situations.
Since you will become Nancy’s main caretaker, don’t forget to take some time to take care of your self as well. You will need some time each week just for you. I have been my husband Tom’s main caretaker since he was diagnose in early 2008. There are going to be times when the road is going to be rough, there are going to be many twists and turns. There will be tears along with moments of joy.
Tom’s Cholangiocarcinoma was totally unexpected, and I to, like you and Nancy had never heard of this type of cancer before he was diagnosed. Since he was on a Cholesterol lowering drug, the Veterans (VA) doctors did blood tests every three months to watch his liver function. In January of 2008 they were normal. In March of 2008 the liver enzymes were 10 times elevated. After the doctors at the VA tried various things such as stopping the Simvastatin, changing his diet, etc. we went to civilian doctors and they did an ERCP and found the tumor and diagnosed him in May of 2008 with Cholangiocarcinoma. He had a resection in June 2008 and things were going very well. In Nov ’09 he (like Nancy) started turning yellow. Back to the doctor where it was discovered that he had an inoperable tumor in the remaining right biliary tree. He was given 6 months and we were told that radiation / chemo would not help.
Needless to say, we did get radiation (28 rounds) and chemo (Xeloda) and now he is considered to be in remission. Throughout his journey, we have never given up hope and our saying is that no one has an expiration date stamped on their butt.
My husband was 61 when he was diagnosed and is now 63. We do not know how much time he has left but each day we make new memories and we are still fighting!
You and Nancy need to continue to make memories for yourselves and for your children. You have a lot of people pulling for the both of you.
Go with God and KEEP KICKIN’ THAT cancer.
Margaret (My husband and Cholangiocarcinoma)
Bob:
Let me join Marion and Lainy in welcoming you to this site. Although your story is a rather scary one, the fact that you are still here leads me to believe that you have a guardian angel watching over you, else some darn good doctors!
Here’s to another 20 years or so!
Go with God and KEEP KICKIN’ THAT cancer!
Margaret (My Husband and Cholangiocarcinoma)
