mlepp0416
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Tom has another successful external biliary drain tube exchange. I keep insisting that we should be getting frequent flier miles at that hospital. It’s pretty scary that when we walk in everyone greets us by name. If I don’t go with Tom (someone else took him today) they all tell Tom to say hello to me!
His Interventional Radiologist can now do his tube exchanges in less than 10 minutes. He was joking today and said “Let’s see if we can get this down to less than 4 minutes”! He does spend time before Tom gets into the operating room and he modifies the tube (adding extra drain holes)
We’ll be back there in 4 weeks for another one. Since we have now gotten onto the ‘4’ week exchange program Tom has not had ANY infections in his liver. That is great so for now we’ll keep getting those exchanges every 4 weeks.
Oh yea, Tom has GAINED 7 pounds!!!!
Go with God and KEEP KICKIN’ THAT cancer.
Margaret
Linda: Don’t let this scare you. My husband Tom was told in Dec. ’09 that radiation and chemo would not help him and to go home and get his affairs in order. This was after he’d had a successful resection some 18 months earlier. He presented with Jaundice and they found a new inoperable tumor in his remaining right biliary tree that also encompassed the hepatic artery (therefore inoperable)
We did not listen to that oncologist, and sought 2nd, 3rd and 4th opinoins. Tom underwent 28 rounds of radiation, had an external drain tube ‘installed’ to relieve the high bilirubin levels and he also did some oral chemo, Xleoda, and about 4 rounds of IV chemo, Gemzar and Cisplatin.
When I helped him shower one day I asked if he’d turn around cause I wanted to ‘check out his butt’ and then I told him “I do not see an expiration date stamped on your butt” and thank heavens for that!
Here it is some 19 months after that onc told him that there was nothing they could do and you know what? Tom is still here with me KICKIN’ THAT cancer!
Tell your Dad to live each day to the fullest, never take ‘no’ for an answer, instead ask “What else can we try”, make sure his doc’s have some experience with Cholangiocarcinoma or can ‘tap’ into doc’s that do. Keep the faith and believe in a higher power.
Go with God and KEEP KICKIN’ THAT cancer.
Hugs,
MargaretRhoda:
So sorry to hear of your uncle’s passing so soon after diagnosis. My thoughts and prayers are with you and your family.
Margaret
Mohit:
My thoughts and prayers are with you and your family during your time of loss. Hold those memories of your Mom close to your heart.
Hugs,
MargaretSo now for the GOOD NEWS! Tom has a CTScan on Wednesday Morning and we met with his Onc today.
Very little tumor activity! The main tumor has decreased in size (although it’s still blocking the bile duct) and there are two other spots (lesions) that have gotten a tiny bit larger but mostly the edges appear to ‘thicken…’ which could just be scarring. Since he has NOT had chemo in over three months, his onc is VERY pleased with all his numbers, and he is gaining weight! He is offically 118 lbs. His Alk Phosphate is holding steady at about the 900 range. Which appears to be his ‘new’ normal for him! No mets (AWESOME) to anywhere in his body. We follow up with his Onc in 8 weeks unless something happens between now and then. Keep those prayers coming, it’s working. Tom is gradually coming to terms with his NEW NORMAL life….
The problem is that he said it SARCASTICALLY, kind of like “So what, so I was wrong, big deal!” It also bothers me that during the time when he WAS caring for Tom and WAS his oncologist, he NEVER once examined him, did a CTScan or MRI or anything! If he’d have been on top of it, we may have caught the tumor before it got so large that a stent could not be inserted and Tom may not be living with his lady friend attached to him. (The external bile drain bag).
I’m thinking that I’m at least going to be writing a formal letter of complaint because I feel that it may help some other Veteran down the road.
Margaret
Oh, I feel SO MUCH BETTER NOW!
Tom had an appointment at the VA in Iron Mountain today. As we were making our way to the Eye Clinic I saw a sign on a door ‘Oncology, Dr. Singh’ and said “Oh, Dr. Singh, gee, my husband is still here!” The door was ajar and I almost walked in to speak to him, but Tom stopped me. (Drat!)
A few hours later when we were leaving the eye clinic, we walked past Dr. Singh’s office again, and lo and behold, Dr. Singh came walking out and was behind us. Before Tom could stop me, I turned around and said, “Oh Dr. Singh, remember us? Margaret and Tom Lepp? I’d like you to meet Tom again, he’s the one you told that he had six months and that Chemo and / or radiation would not help him. You told him to go home and die and you told him that he would die within 6 months. I’d just like you to know that it’s been 18 months since you said that, AND Radiation and Chemo DID help, and the last time I looked at his butt he did NOT have an expiration date stamped on it. You should NEVER tell a patient that there is nothing that can be done until you have exhausted all avenues of care!” Want to know his reply?
He put his hand on my shoulder and said “Sometimes we can be wrong” and walked away.
I now feel the need to file a complaint with the VA regarding this Oncologist. He has never once set up another appointment with Tom, has never contacted him again questioning his need for an oncologist (Because most likely he figured he’d died because after all he did give him only 6 months!)
Feedback? Did I do the right thing by confronting him? Should I go ahead and file a complaint?
I do know that I FEEL better now that I spoke my piece to him!
Margaret
Tom also developed a bed sore on the ‘end’ of his tailbone. He’s lost so much weight that he is just skin and bones. The wound center at our local hospital said that there was ‘nothing they could do, it was too far gone’. I could not believe that!
What I then did was to wash the area 2x daily and then put hot compresses on it for about 10 min each time. Then I used Aloe Plant which I applied directly to the wound, then an ointment to promote healing. Gradually over a three week period I got the sore to heal. He now has a RoHo pillow ($430.00) that he sits on. This pillow has ‘fingers’ that fill up with air and takes the pressure off his tail bone when he is sitting.
Your dad probably has to stay off his backside, laying mostly on his side as much as possible.
Good luck.
Margaretan added point, after Tom’s initial resection he had two drain tubes for 7 1/2 months. The 2nd drain tube was added after surgery because he had a pool of bile collecting behind the liver. This is fairly common with bile duct cancer where they remove the liver. The cut side of the liver can ‘leak’ bile into the abdomen and that means external drain tubes to drain off that bile so it does not ‘grow’ bacteria.
It sounds like his doc’s are on top of everything. The only other thing I would add is to ensure that the ‘Wound Care Team’ has been called in to address the bedsore that your dad is experiencing.
Margaret
Don’s Daughter:
As a Step Mother myself, I urge you to be very careful on how you approach this with your dad’s wife. This may depend upon how good of a relationship you have with her and also may depend upon how long they have been married.
My husband Tom has three children from previous marriages and he and I have been married for 10 years. Although I will listen to advice from his children regarding his care, he is my husband and he and I make decisions together regarding his care. As his wife, I have the final say so in all those decisions.
Since Tom’s children do not care for him on a daily basis (I do) I feel that they do not have many ‘rights’ in making any decisions for him or for his care. That includes doctors, hospitals, surgery, chemo, etc. They are not the ones paying for the health insurance, they are not the ones who help him bathe, dress, get to/from doctors appointments. They are not there by his side for each and every surgery that he has. They are not the ones who changes his dressings, they are not the ones who spend time with him.
If you do approach this subject with your step mother you will have to do it in a very cautious, sensentive manner so you do not get her upset, after all she IS HIS wife.
I know that this is a very hard thing for you to watch your father go through, however, she is his wife and those decisions have to fall to her.
Hopefully your dad’s doc’s figure this out quickly!
Go with God!
Hugs,
MargaretOh I forgot! Tom also bruises VERY easily! He never had that before and it could be a side effect of some of the medications that you are on, or a side effect of chemo. When you are on chemo, your red blood cells get depleted and I think one tends to bruise more easily than not.
Margaret
Ritchie:
Don’t ever feel the need to apologize for ‘ranting and raving’ on this web site, that is WHAT it is for!!! I’ve done plenty of it in my posts as well!
Tom never had any of the itching associated with his high bilirubin levels and at his highest, he was at 26,500! I don’t know why he did not experience the itching, but I am thankful that he did not! Even his doc’s were confused by that. He’d had a stroke in 2005 and maybe that stroke damaged the part of his brain that should have told him he was supposed to itch? I don’t know!
However, the high bilirubin levels do become dangerous at some point, in addition to the itching, it can also cause brain confusion (which Tom never experienced either) therefore they CAN put in an external drain. Tom has a tube that goes directly into his liver from the outside wall of his chest. It is stiched into place and on the end of the tube, there is a bag that collects the bile. This tube has to be flushed daily with 10CC of saline, then a new bandage placed over the site. I wash the area daily with a antiseptic solution to help keep down the chance of an infection. I would hope that you have someone close to you who could do this for you on a daily basis as it would be hard to do yourself, although not impossible….
Chemo would not destroy the bile duct any further than it has already been ‘destroyed’, but there are options which can relieve the itching. The external drain bag is the fastest way to relieve the itching and IF they are unable to get an internal stent in place, this may be the route that your doc’s will have to consider.
I know that you can get some topical things at the local drug store for itching, an oatmeal bath that is used for chicken pox is one thing that may give temporary relief. There are also other ‘anti-itching’ products that you can buy over the counter, but not sure as to how much relief you would get since your itching is caused by too much bile collecting in your body.
You will urinate some of the bile out of your system, so lots of fluids will help somewhat. Since the bile isn’t getting into your intestines like it should be, it all backs up in your system and your kidneys will flush some of it out, however that may not be enough to stop the itching.
Tom has had the external drain for over a year now, and it’s become a part of his daily routine. Is it a nusicance? Yes of course, but since he’s had it installed, his bilirubin is at about 5,000 to 7,000 (under 3,000 is considered normal). It may be the only option to relieve your itching I fear. Along with having the external drain, Tom has to get his tube exchanged about every 4 weeks because any longer than that he ended up in the hospital with severe infections. Since they put him on a 4 week exchange schedule, he has not experienced any liver infections at all (Knock on wood!)
Please keep us posted on what your doc’s decide to do! Tom has not had any chemo in almost 4 1/2 months now and is feeling like his normal self! He has a CTScan tomorrow to ‘re-stage’ the cancer and to look for any spread. He does have a port that was installed when the radiologist ‘saw’ a mass in his pelvic area (and that mass was gone completely less than 4 weeks later) so we don’t think it was a mass at all! And we also think he underwent IV Chemo needlessly. However, his onc says NOT because his tumor markers WERE elevated and the chemo didn’t hurt him any….(lots of questions unanswered on that one…but we won’t question it anymore).
I’m hoping that your doc’s can figure out a game plan for you…Take this little bit of advice WRITE DOWN your questions! Else you will forget them! Buy a digital recorder ($40 at Radio Shack) and record your visit with your Onc. Then play it back and listen to it after you get home. If you have ANY questions after listening to it, then RE-ASK your onc!
Go with God and KEEP KICKIN’ THAT cancer.
Hugs,
MargaretCedar:
Hang in there! Sounds like your Mom is entering a rough period in her journey with CC. She may need a Parcentesis (draining of the fluid) if the fluid is collecting in her abdomen. It’s a fairly simple process which takes about 30 min. tops. Sometimes it can be controlled by water pills, other times it cannot be controlled.
I know that watching a loved one go through this journey can be tougher on YOU than on the patient. I experience this first hand with my husband Tom. Please see my post under “My husband and Cholangiocarcinoma – Part 2” from early this morning. This may be something that can help you get through this rough patch in the journey!
Hugs,
MargaretThree Years ago…when Tom was diagnosed with Cholangiocarcinoma. My how time flies!
And even though in most cases it appears that this cancer means that one’s life may be cut short, it can also mean that life has a whole new meaning and that one begins to appreciate life in a whole new manner.
Everything takes on a new perspective for the person who has been given those words “You have cancer”…(and for that persons family) whether it be Cholangiocarcinoma or any other type of cancer. Some cancer is worse than others, but some cancer’s can be ‘cured’ and others cannot.
So with a cancer such as Cholangiocarcinoma entering one’s life your life’s path changes. The person you thought you were going to spend the rest of your life with may not be there with you into your ‘golden’ years. The person you rely on the most suddenly becomes the person who relies on you! You find yourself doing all the things that he once did and more because your life changes based on his needs.
You sometimes have to find the joy in the little things in life, things that really didn’t seem to matter before the cancer diagnosis! But things that now have taken on a whole new meaning.
In some ways I’m grateful for Cholangiocarcinoma because it has given me the chance to express my love for Tom in ways that I never thought were possible. Just by being there for him, giving him moral support, standing by him when people that he thought were his friends are no longer here. Family that he thought would stand by him through thick and thin no longer come around. (Is it that they are uncomfortable with how he looks now? Are they afraid that they might catch his cancer?)
I’m grateful that I’ve had the last three years rather than to have him taken suddenly from me with no warning (although sometimes I feel that would have been easier to deal with in the long run).
I’m grateful for my employer and the insurance that we have because of my employment. I’m grateful for being able to work at home which gives me more time with my husband.
So each time one of you caregivers want to give up and throw in the towel (myself included) try to stay positive and take a deep breath and remember what Cholangiocarcinoma HAS given you! Another chance to express your love for your spouse, father, mother, brother, sister, aunt, uncle, cousin etc.
Go with God and KEEP KICKIN’ THAT cancer.
I’m HOPING for ANOTHER three years!
Margaret
