mlepp0416
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Rick: So sorry to hear this – Tell Cindy to hang in there (from one caregiver to another). Keep the faith and take it one day at a time. I know that sometimes doc’s can be wrong. For Tom and I they told him he had a mass in the groin and started him on IV Chemo and three weeks later there was no evidence of a mass so we suspect that there had never been one in the first place….
Go with God
Hugs to both you and Cindy.
Margaret
LadyBug: I just read Dave’s caringbridge.org site. My heart goes out to you and Dave and your family. Words cannot express….Dave will be in our thoughts and prayers and Tom says “Hang in there!”
I know first hand what you are going through. Tom has been hospitalized a few times where I thought that I was going to be making final plans for him and each time he has beaten the odds and bounced back. Currently he is fighting high ammonia levels and we are hoping to conquer that issue too.
The last time they also told me that his liver was failing, and he is still here. He was given 6 months, and tomorrow on Feb 1st we start the 15 month of life (as I call it) since that dreadful diagnosis.
Go with God and we will be praying for Dave.
Hugs,
MargaretLainy, Charlea and Nancy: Thank you for your posts! Yes we will be watching the Super Bowl and hoping for the Packers to WIN! Yes, CC journey is kind of like a Soap Opera isn’t it? Never know when you are going to hit a bump or twist in the road on this journey!
LotsofQuestions: Thank you for your kind words! You are right, CC affects the entire family, not just the person with CC. One of the reasons I continue to come back to this board is to keep my own sanity! It gives me a place to vent, scream, cry, laugh and to help others who are experiencing a loved one with CC. My husband and I have been dealing with this for almost 3 years now and I as his caregiver have learned so much that it would be unfair for me to keep that knowledge all to myself, when I can hopefully help others!
I realize now that I missed my true calling! I should have become a medical professional such as an RN (Registered Nurse) but at this stage of my life I’m not so sure that I’d want to start over!
Doctors in the US can write scripts for more than a 15 or 30 day supply too. But the insurance company won’t refill a script if it’s ‘too soon’ and Tom’s issue was that the Veterans had just filled his script for pain pills, but it’s mail order and would take 5 – 7 days to get here. Oh yes, I save receipts for anything medical that we pay, as well as to calculate any mileage for medical, even those trips to the Pharmacy to pick up prescriptions as mileage is also tax deductible here in the US.
I love Canada! Tom and I go to Whitefish lake almost every year for Walleye and Perch Fishing! NoLaLu Ontario is the very small town that is down the road from Whitefish lake. Wonderful memories of Canada. However, CC has even robbed us of taking our annual fishing vacation. We have missed two years now and I highly doubt that we will ever get to do that again as a couple because Tom would not be able to withstand the car ride, let alone sit out on the lake for any length of time. Some things just suck about the cancer.
As for my sense of humor – I look at it this way, I could be full of gloom and doom or just try to find some good things about this journey and if I can’t find something good, then I try to put the humor spin on it!
Go with God and KEEP KICKIN’ THAT cancer.
(notice that I never capatalize the word cancer and that is because that word is not worthy of being all upper case letters cause it SUCKS)Margaret
Tom goes in for another tube exchange on Monday the 31st of January. It should be fairly routine.
Slightly funny story to share. On 1/6/11 his PCP gave him a script for Morphine, 60 tabs. Every 4 hours. (which is about a 15 day supply and we were at day 22)
Since his medications had not yet come from the VA, his oncologist gave him another script for 60 tabs since he only had two left.
He dropped it off to get it filled and the pharmacy said it could not be filled until the 19th of Feb.
When I called them to find out why, they said the insurance said it was a refill too soon. We figured out that the VA had most likely FINALLY refilled his morphine on 1/27/11. (It was ordered 5 weeks ago, but someone at the VA fumbled that one and it wasn’t until after Tom called the VA last week Monday questioning as to why it had not yet arrived, then they checked on it and his doc at the VA finally got it ordered and they were putting a ‘rush’ on it)
Well, I knew that his morphine from the VA would not get here at least until Tuesday, so I asked the pharmacy if we could just buy them and not run them through the insurance, she said she’d have to check with our insurance to ensure that it was the VA that had filled them. It was the VA Mail Order, so the pharmacy called back and said they could fill them under self pay and it would be $22.79. Since he can’t go for 4 – 5 days without his pain medication I told her we would be right down to pick them up.
I realize it’s a controlled drug, and they need to ‘control’ it so it’s not abused….but for heavens sake the man has cancer and so what, the insurance would deny him his pain medication??? Whatever! So there is a way around it, just don’t run it through your insurance and pay for it yourself!!! Something to keep in mind if you ever encounter something similiar.
In general Tom is still feeling pretty good, he had blood work yesterday and his bilirubin is at 6.7 – so that is holding pretty steady. His Alk Phosphate is elevated again up to 1258, (it had been down to 958) so I’m a bit concerned about that…and his amomnia levels are high again, so now he has to take a lovely cocktail to make him go to the bathroom. The only way to get rid of high amomnia levels is to poop it out I guess! You can imagine that he is just thrilled about that!
He has the tube exchange on Monday, a CTScan on Friday and goes back to the Onc next Monday to get the results….then they will be making a decision on Chemo. And believe it or not of all the people going to Aurora BayCare Vince Lombardi Cancer Center here in Green Bay, there are only TWO people who have ports installed for chemo! I found that very hard to believe!
And in three days, we start the 15th month of life, so when your doctor tries to put a timeframe on when your life will end, don’t accept it! Tom is a great inspiration and we never gave up! If we would have listened to that oncologist I believe that Tom would have passed on within that 6 month time frame. Instead we pushed for other opinoins and found out that there were things that could be done, and he is living proof that Dr. Sing was WRONG! But is is scary that some people put so much stock in what their doctor tells them that many may just give up and do nothing and then yes, they may pass on as soon as their doctor predicts!
Go with God and KEEP KICKIN’ THAT cancer.
Margaret
Theresa: In my husband Tom’s case after his re-occurance after his left liver resection, we delayed treatment but were able to get 2nd, 3rd and 4th opinoins all within a week and treatment started about 2 weeks later.
I got him into Marshfield by presenting to the ER and we had an appointment within 2 days with an oncologist. During that 2 days we called him PCP and he got an appt with the Vince Lombardi Cancer Clinic in Green Bay were we live for that Friday and we took a road trip to Milwaukee to meet with his original surgeon. The luck of the draw? A guardian angel? We will never know but it all got pulled together pretty quickly for Tom
Even while in treatment, you have the right to consult with other doctors and move your care to another doctor – remember YOU are paying THEM!
Go with God and KEEP KICKIN’ THAT cancer.
Margaret
Melanie;
My husband and I were much in the same boat as you. I had a very well paying job, he is disabled and when we bought our beautiful home on 2 1/2 acres we were on the top of the world. 4 years later, my work outsourced my entire department to Inda. 3 years later we got the cancer diagnosis. After about 1 year, I quickly realized that I could not work, care for him and keep up with the large house and all the yard work. The yard and the house suffered. We discussed it and put the house on the market. We did end up selling it however it took a while, and while we did not make any money on it, we felt that we didn’t loose any either. (Housing market sucks).
We downsized to a double wide mobile home that is in a mobile home park. It takes 15 minutes to cut the grass vs 3 1/2 hours. The lot rent is $237.00 a month vs $500 mortage payment (we had a huge downpayment so low mortgage payments). The taxes are $45 a month vs $400 a month. We moved 6 miles from our old house so spend a few more $$ in gas to/from work. Now I am able to work at home so even save that money!
It was a huge stress reliever for me! No longer worrying where the money was going to come from to meet the taxes, insurance, etc with owning a conventional house. The double wide is just like a house, has the same square footage (minus the basement) and is just perfect for us. We have no mortage cause we were able to buy the double wide outright, just have to get the lot rent every month. Piece of cake.
I say get the house on the market! Even if you have to move into an apartment, the stress relief will be wonderful. When it comes to moving, do what I did, I called in all my ‘markers’ from the people that I had helped over the years, rented a big truck and we had the entire place cleaned out in 2 days! We had the new house pretty much organized also. Only the garage was full of stuff that we had to sort through and we ended up with a storage unit for a year till we could decide what to do with the ‘junk’.
All in all, we have been here a little over 2 years and it has been the best thing for us!
Go with God and KEEP KICKIN’ THAT cancer.
Margaret
Hi Ritchie.
Welcome to the site that no one really wants to join. You will gets lots of support and suggestions from the others on this site.
My husband Tom was diagnosed with Cholangiocarcinoma in Mar ’08. Prior to that he was a fairly healthy 61 year old. His cancer was discovered when his liver enzymes elevated 10 x normal. After an ERCP with brushings from the site of the tumor we got the news that it was cancer. In June ’08 they removed the left side of his liver (Actually they took 3/4’s of his liver and his gallbladder)
He was in the hospital 3 weeks in total because his liver developed a leak. He did very well for 18 months but his doc’s did not do any chemo or radiation cause they had clear margins and did not feel the need for chemo.
So, 18 months later he started turning Jaundiced and I knew something was wrong. His new doc’s now say that if he’d had chemo after surgery he may not be in the position he is in today. In Dec. ’09, his then oncologist gave him 6 months and also said that chemo /radiation would not help. We did not listen to that and sought other opinoins. After 28 rounds of radiation and then oral chemo (xleoda) he is still here. They were also unable to get a stent internalized, so he has a drain going directly into his liver to drain off the bile.
We are currently at almost 14 months of life after he was told 6 months. As for quality of life, for the most part Tom’s quality of life is good. He gave up deer hunting this past year and we missed our annual fishing trip to Canada and flew to Flordia instead and had a very good time visiting our niece and her family.
Tom has always pretty much handled his own personal care, unless he feels too weak, then I step in to assist. If you have someone who can help care for you, that is wonderful (a spouse, family member or good friend) so they can assist you when you need help.
Tom did not have any restrictions on food that he could/could not eat. When he is on Chemo, the chemo does alter your taste for certain foods. That is about the only thing that I noticed. For instance, eggs just tasted terrible to him so we just did not have eggs! Tom has a great doctor who pretty much prescribes his pain medication as he needs it. I would also recommend that you speak to your doctor about an anti-depressant – right away and continue to take it daily. It will only help you get through any rough spots. Tom did not want to take it until he say what his mood swings were doing to me, now he takes it every day and life is back to normal.
Make certain that you write down your questions (else you will forget them!) and if your surgeon can’t answer them, ask him to research them and get back to you. Don’t be afraid to seek 2nd and 3rd opinoins if necessary. You need to have a lot of confidence in your surgeon! We fired the first surgeon who ‘wanted ‘ to do Tom’s liver resection because he did not give me any warm fuzzies and frankly we did not like his answers to our questions.
Do your research before you meet with the surgeron, line up someone to be with you during surgery and to be your advocate while you are hospitalized. Never take ‘no’ for an answer, ask what else can be tried when they say ‘no’.
There are some numbers that you would want to watch. Bilirubin level, Alk Phosphate, tumor markers just to name a few. Tom’s Alk Phosphate level was the one that was 10 x’s elevated and was the first clue that something was wrong.
Have they discussed placing an external drain for you? Tom will have his for the rest of his life because between the radiation and the tumor they believe that his bile duct is destroyed and cannot place an internal stent. But it is not as bad as it sounds and it beats the alternative.
Please feel free to ask any questions. I have been Tom’s caretaker for these past three years and we have pretty much been through it all. My best advice is to insist on some form of chemo after your resection, EVEN if they tell you they got clear margins! I wish I had known that three years ago when Tom had his resection.
Go with God and you KEEP KICKIN’ THAT cancer.
My thoughts and prayers are with you.Margaret
Andie:
Is your dad’s tube leaking around the ‘hole’ in his side when they flush it? If so, that is ‘normal’. And actually that is good because then the flush is getting all the gunk out side of his body. Gunk is the old bile that kind of collects around the tube. I thought I read that your dad has had the tube for quite some time now, so it is possible that a tube exchange is in order. My husband has his external drain tube changed out every 4 weeks, and you can reassure your dad that it’s not a major procedure, take only about 10 minutes to actually exchange the tube. They thread a wire up inside the original tube, pull the old tube out and tread a new tube over the wire, pull the wire out and stitch the new tube in place. If they give him a general anesthetic, then it’s a 1 hour recovery time. Tom has had it done so many times that they don’t even put him under any more, so his total time now is less than an hour.
When they flush your dad’s tube he should be in an upright position so that the liquid can run out of the hole, else everything is pushed back into the liver. The flush is to keep the drain holes open.
Hugs,
MargaretSusan and Randy…what a wonderful post. This brought tears to my eyes as it reminder me so much of our situation. My youngest daughter wanted her step dad Tom to be able to walk her down the aisle on her wedding day, so he delayed his liver resection until afer her wedding and made that walk with her. When her first little guy arrived (10 weeks early @ 2 lbs 9 oz) she named his Thomas after his Papa Tom. He is now 19 months old and Tom never thought he would be alive to meet him because he was given only 6 months to live. But here we are 14 months later and little Thomas is the apple of his Papa Tom’s eye!
Isn’t it great that Papa Randy got to hold him first? That is just awesome!
Randy is in our prayers and hopefully he will get to see that first birthday come around for little Jonathan.
Go with God and KEEP KICKIN’ THAT cancer.
Margaret
Sidig:
Welcome to the site that no one really wants to join, myself included! Just about 3 years ago, I had never even heard of Cholangiocarcinoma, let alone how to spell it. Now it is a common word in my vocabulary!
My husband Tom, age now almost 64. He had been fairly healthy and had blood test every 3 months because he ws on cholesterol lowering drugs. In Jan ’08 his numbers were fine, in Mar ’08 his liver enzymes were 10 times elevated. Then after multiple tests, we got the word, cancer, cholangiocarcinoma. His original tumor was just in the left part of the liver, just above where the bile duct splits off into the left part of the liver. He underwent a successful liver resection where they removed almost 3/4 of his liver. He had a bile leak where the liver was cut and had two tubes for 7 1/2 months. After surgery we questioned about the need for chemo, but because they had clean margins, his doc felt that there was no need…(big mistake we now find out).
For 18 months life went on and in Nov ’09 Tom started turning yellow. I knew something was wrong and we went to the ER. A ctscan revealed a new tumor in the remaining part of the liver. It was inoperable because of the location and because it involved the hepatic artery.
After a failed internal stent placement, they placed a tube into his liver to drain the excess bile off into a bag. He then underwent 18 radiation treatments to kill the tumor. They have tried multiple times to place a stent, but between the tumor and the radiation, they suspect that the bile duct is destroyed, therefore he will have the internal tube and external bile drain bag for the rest of his life.
In Dec ’08, his ‘then’ oncologist told him that radiation/chemo would be of no use and that he should go home and get his affairs in order, and gave him 6 months. I would not listen to that (Never take NO for an answer). We sought 2nd, 3rd and 4th opinoins and thank heavens we did. Although everyone agreed with the ‘inoperable’ part they all gave us hope with radiation/chemo.
So Tom is still here and in Feb ’11 we start the 14th month of life and we WILL celebrate our 10th wedding anniversary. Tom has a tube exchange every 4 weeks, and may or may not continue IV Chemo. After radiation, (28 treatments) he underwent an oral chemo with Xleoda. In Oct ’10 they told us that the cancer had metasized to the groin area, installed a port and started him on gemzar/cisplatin IV chemo. About 4 weeks later, the mass in the groin area was gone. (was there ever anything there in the first place? We do not know). Currently his numbers look good. Bilirubin is 7,000 (normal is under 3,000) and his tumor markers are 106 (normal is under 30) and he has currently decided to take a break….he says he knows what ‘terminal’ means and right now has decided to choose quality over quantity. And if he does not change his mind, I’m OK with that because only he knows how the chemo makes him feel. I support him 100%.
As I have said before, no one has an expiration date stamped on their butt! We did ask about a transplant early on in this journey and were told that given the current protocal for transplants, someone with cholangiocarcinoma would not be a good candidate for a liver transplant because even with a resection with clear margins, this type cancer can, and many times will reoccur. And with Tom’s age and other medical conditions, he would not be a good candidate for a transplant.
So here we are taking every day in stride, grateful for each day that we are given, building memories with each other and with our children and grandchildren and friends. Prayers and faith will become good friends and most of all, attitude helps a lot.
Go with God and KEEP KICKIN’ THAT cancer.
Margaret
Dear Lots:
My husband has had an external drain tube into his liver for the past year. His bilirubin level was 24,000 (24) when the drain was first inserted. It has been holding at aroung 7,000 (7) for the past three months. Below 3,000 (3) is considered normal.
When they first inserted the drain tube they told him it would take 2 – 3 weeks for his bilirubin level to taper off. Your mom’s urine is probably a lot darker than normal as well because the kidney’s try to flush the excess bile out of the body as well. If the bile duct is plugged, the bile backs up into the system and the kidneys flush the excess (as much as possible) out of the body.
One of the things that we have to do on a daily basis for my husband Tom is to flush the drain tube each day, that keeps the holes open, then I clean the wound and rebandage it. His IR (Interventional Radiologist) also adds extra holes to the tube before it is inserted into the liver. And we get the tube exchanged every 4 weeks to help prevent infections. We were having the exchanges done about every 8 – 10 weeks, then every 6 – 8 weeks, but after three serious infections we are now on a 4 week schedule.
Feel free to ask any questions about the external bile drain as I have tons of experience with this issue. After Tom’s resection he had a JP drain (in fact, he had two of them) for 7 1/2 months because after the surgery he developed a bile leak from the cut side of the liver. He has had the current drain since December of ’09.
Hugs to your Mom!
Go with God and KEEP KICKIN’ THAT cancer!
Margaret
Minnie: I would follow Marions advice and have the two doctors speak to one another, as well as to get his previous scans sent to the second doctor! We all know that mistakes can be made.
In my husband Tom’s case they told us this past Oct that his cancer had spread to his groin/bladder area and they started him on IV chemo Gem/Cis and three weeks later we were told that the mass was GONE! We don’t believe that there was a mass to begin with that the radiologist read the scan incorrectly. We also had another experience where the radiologist reported that the gall bladder was intact w/no gross abnormalities (his gall bladder had been removed two years prior), and also that a kidney stone was gone, when in fact it was still there and had to be surgically removed.
So, scans are misread all the time and I would certainly seek another opinoin or at least have everything reviewed!!!!
Go with God,
Margaret
