mlepp0416
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After reading all these post about people with CC being on a cholesterol lowering drug, I’m wondering if there is any connection to CC and the cholesterol lowering drugs? Could it be possible? I think yes. Now the real question is there any data to support this conclusion? I think no. Would the parmacutical companies be so rash to put those types of drugs on the market knowing that they could cause cancer? I think yes, because of the money that is to be made. Food for thought.
Margaret
Dawna:
One of the things that my husband Tom did when he started out on treatment for his new tumor was to go to radio shack and purchase a small digital tape recorder. When I cannot be off work to attend doctor visits with him, he takes it along and tapes the meeting with the docs. When I get home from work, I just listen to the recording and then I know exactly what happened and what was discussed and what the next game plan is. This is very nice, and if I have questions, I write them down and Tom calls his coordinator the next day and gets the answers to my questions.
This method has worked well for us for the past 4 months and it keeps me in the loop for those times when I can’t be off work. Perhaps this is something that you could consider doing for your mom. It’s always nice to have the recording, because then other family members who have questions just have to listen to the recording and you don’t have to keep repeating what happened. Tom’s children and friends have all been able to hear the recordings and then they know exactly what is going on as well.
It’s also great to be able to go back to those recordings when you can’t remember what was said.
Prayer’s coming your Mom’s way from Wisconsin.
Go with God and KEEP KICKIN’ THAT cancer.
Margaret
Jeff:
When it rains, it pours, eh? So sorry to hear about your brother. Hopefully they can figure out what is causing Marc’s fevers and the right antibotic to stop it in it’s tracks!
Prayers coming Marc’s way and for your brother as well.
Go with God and KEEP KICKIN’ THAT cancer.
Margaret and Tom
Hans and Kris:
So sorry to hear that the surgery did not go as planned. We’re all rooting for Kris. I know that with her determination she will not give up her fight! Just like the rest of us dealing with CC, she will pick up and continue as we all have done when faced with a setback!
Prayers for a speedy recovery coming her way from Wisconsin.
Go with God and KEEP KICKIN’ THAT cancer.
Margaret and Tom
Just thought I’d better post something – we have had a VERY GOOD WEEK! No fevers, no chills, no anything!!! I think the roller coaster is taking a break.
Tom just finished his last round of chemo and has the next 7 days off, so that will give his body time to rest and recuperate!
He’s been eating better this week as well, still skinny as all heck, but eating well!! Also been willing to try more diversity in foods which is good! His latest craving has been for clementines (tiny oranges) and he’s been eating about 2-4 of those a day! Must be something in those that his body is needing right now. He’s also been on a milkshake kick, and ice cream cones. (Not so good for a diabetic, but he needs the calories!) Tonight he was craving Chop Suey so that’s what I made him for dinner. (Whatever the man wants is what he gets!)
I’m hoping that the next week is as good as this one was!
And did I mention that I’ve gotten him re-connected with his first born daughter? He’d not seen her since she was a very little girl. She is now 41 and comes to visit him about once a week and today we went to her house and met her husband and her 5 year old daughter. Her 11 year old son was not there, so we will be meeting him in about a week. (Too bad that it took this illness to finally get them together, but I’m so glad that I reached out to her, and she was so receptive! So far everything is going well and we’re all sharing wonderful memories and trying to pack 37 years into every visit!) Case in point: If you have someone that you haven’t been in contact with, someone who is/was important in your life, make that call! Reach out to them, you may be surprised at what you find.
Go with God and KEEP KICKIN’ THAT cancer.
Margaret and Tom
Kris and Hans:
Our thoughts and prayers are with you both. I will be thinking of both of you tomorrow.
Go with God and KEEP KICKIN’ THAT cancer.
Margaret and Tom
Linda:
My husband Tom is on Xeloda and he also gets the ‘flushed’ face. He is on his third ’round’ and so far that is about the only symptom. Perhaps a bit of numbness in his fingers but so far nothing that he can’t deal with. I think the ‘flushing’ of the face is normal, but by all means mention it to your doctor. I know that Tom’s doc’s want to know EVERY little change in anything….
Go with God and KEEP KICKIN’ THAT cancer.
Margaret
lbellmurphy:
So sorry to hear that you have been diagnosed with CC. Welcome to the best CC site for infomation and real life stories. You will find a lot of information on this site.
Why is Chemo your only option? Have you sought other opinoins? Where are you seeking care? Do you have family to support you through this? How old are you? Multiple tumors or only one? Confined to the bile ducts or do you have mets? Is it considered inoperable? What about a resection or a whipple? What is your bilirubin level? What is your alk phosphate level? What chemo are they offering?
Sorry to fire so many questions at you, but without more information it’s hard to offer advice without knowing some of the particulars.
My husband Tom was diagnosed in March ’08 and had a successul liver resection, but presented with a new inoperable tumor in Nov ’09, has undergone radiation treatments and is now on chemo, Xleoda. You can read about his journey under “My husband and Cholangiocarcinoma”
I am adding you to my prayer list.
Go with God and KEEP KICKIN’ THAT cancer.
Margaret
Jeff:
Hang in there. I do believe that being the caretaker is sometimes harder than being the patient. I know that watching Tom take his poison…um I mean Chemo day after day is heartbreaking but even worse than that is watching him lose so much weight. All we can do as caretakers is to be there for them and give them the moral support !
Go with God and KEEP KICKIN’ THAT cancer.
Margaret
Marion, Gavin and Laniy thank you all for your posts and words of support. On Friday when we got that news, Tom was pretty upset as I was. One never wants to hear that you’ll have the bag the rest of your life. But now a few days have passed and we’ve come full circle and are more upbeat.
We’ve accepted it and have decided that ‘it is what it is’ and it could be worse! We are going to have Dr. Dempsey send everything to Mayo for a third opinoin and if Mayo doc’s agree then it will be final. And if it is, then we’re going to see if they can do a stoma which will mean that there will be no ‘Tube’ with the bag and that will be easier for Tom to deal with.
Having a great weekend with our Daughter and Son in law and two grandkids visiting from Iowa.
Go with God and KEEP KICKIN’ THAT cancer.
Margaret
Well, another twist in the road! Dr. Dempsey conferred with Dr. McDermott at UW Madison who reviewed all the scans, xrays, MRI’s and all the stuff from interventional radioloy from the 5 attempts at placing an internal stent in Tom’s liver.
Bad news all around…between the tumor and the radiation they feel that the bile duct is ‘destroyed’ and there is no possible way to place an internal stent. Per Dr. Dempsey about 75% of the bile is draining out into the external drain bag. They feel that he will have to have the bag for the rest of his life. Tom is basically looking at this as another death sentence. He is very depressed and does not want to live with this bag for the rest of his life. He knows that he needs the bile getting into his system in order to gain weight and feels that now it is just a matter of time….however before he went to bed he told me to bring him his anti nausea pill at 8:30 and his chemo pills at 9:00 (I kind of thought that he would not even want to continue taking the chemo but I was wrong)
Dr. Dempsey said that we could ‘shop around’ and get other opinoins but I’m certain that we would just be getting the same bad news no matter where we go. I know that he would not be up for any kind of major surgery such as getting the liver cut open again and somehow getting a stent into it that way, so maybe at this point in time it’s best to say “It is what it is” and live out the rest of his time and make the most of it.
Sorry to be sounding so depressed right now….and have I told you lately that I HATE THIS CANCER!
Love to all,
MargaretLD:
I think that your thought process is entirely normal. I have been my husband Tom’s caretaker for the past 24 months, and I can attest that the roller coaster that we are on has many ups and downs. Tom also has what I call PMS (poor man syndrome…’sorry guys’) and he can get downright mean and always seems to take it out on me.
Sometimes I want to cry and scream at him, but then I take a step back and realize that it’s not really ‘me’ that he is upset with, it’s the cancer and the fact that he cannot do the things he once did. He cannot help clean the house, or cook the meals or do the laundry as he once did. He feels helpless, he feels overwhelmed by doctors, hospitals, tests, chemo, radiation, pills, more pills, nausea, pain, etc…and all he knows is that he does not like it. Since I am the one that is always there, I take the brunt of his frustrations.
Tom also has fallen a few times and also refuses to use a walker. (But then he did the same thing after his stroke so that does not surprise me)
The good thing is that after he calms down and feels better, he always apologizes. He tries so hard. I cannot feel what he is feeling. I do not have to take poison to cure cancer. I do not have to go through radiation. I’m not the one who has been told that he is dying. All I can do is to be there to support him in the best way that I can.
CC is not only tough on the person who is fighting it but also on that person’s caretaker. I know this and so do many others. Rest assured that you did not ‘starve’ him, the cancer alone did that.
Tom has gone from 180 lbs down to 121 in the past year. He was slowly working his way back up and had gone up to 159 lbs when he presented with a new tumor in November 09 and now is 121 lbs. Tom is 6ft tall so you can imagine what he looks like. It is very sad to see as he looks like he has anexoria. He eats but is not getting much nutrition from what he eats. I also push liquids, Boost Plus, Milkshakes, Gatoraid, etc because he does need the fluids.
Please take it one day at a time, and rather than focusing on the ‘end’ focus on the good times that you had during your time with your husband. I’m sure that you have many fond memories of your lifetime together. Too many times we tend to focus on the bad times and we forget about the good times.
Go with God.
Margaret (My husband and cholangiocarcinoma)
My husband Tom was on Simvastatin and therefore had his liver enzymes checked every three months. In Jan 08, his levels were fine, in Mar 08 they were 9 times elevated, and the search for finding the ‘why’ began. Thank goodness for those blood tests, else they may not have found his cancer until it was too late. Until his reoccurance of a new tumor 18 months later, he was his surgeons ‘success’ story…
Margaret (My husband and Cholangiocarcinoma)
Courtney:
By the way, I have a grand-daughter with the same name! As to your question about chemo….my husband Tom was told by his oncology team at the Milwaukee Veterans Hospital in Milwaukee, after his liver resection, that there was no need for chemo as his margins were ‘clean’.
In retrospect, I wish we had pushed for chemo just to be on the safe side. His new oncologist here in Green Bay are now saying that if he’d had chemo after his liver resection that he may not have presented 18 months later with a new tumor. The oncologist at the Vince Lombardi cancer center where he now goes state that they ‘ALWAYS’ have their patients go through chemo for at least two or three sessions to catch any stray cancer cells that may be lurking around inside, and they have had very good successes with that protocol.
My thought process is such that I’m thinking ‘what can it hurt?’ In your dad’s case, it he has insurance and the insurance will cover the chemo, then I would think that he would want to listen to the doctors….but as always, it should be his decision as he knows what is right for himself.
Go with God and KEEP KICKIN’ THAT cancer.
Margaret (My husband and Cholangiocarcinoma)
munchkin:
Roller Coaster ride? Wow, I can relate to that as I’ve been on this roller coaster with my husband Tom for over 2 years now. It has been quite an adventure that is for sure.
Welcome to the best site on the internet that I have found for CC patients and their caregivers. Your story is very familiar in that CC is very hard to diagnosis and there are actually not very many doctors who have encountered this type of cancer in their careers, and many don’t know how to treat it! For instance, my husband Tom’s original oncologist told him to go home and get his affairs in order and that he had 6 months. When I questioned him on Chemo and / or radiation, all he said was “It won’t do any good”…
Being that I’m not one to take ‘no’ for an answer, we promptly set out to find other answers and thank heavens we did. Tom underwent radiation and it has all but killed his new tumor.
Keep the faith and remember that no one has an expiration date stamped on their butt!
Prayers are coming your way from Wisconsin.
Go with God and KEEP KICKIN’ THAT cancer!
Margaret (My husband and Cholangiocarcinoma)
