devoncat
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Suzanne,
Not the news we wanted to hear. I hope they figure out the platelets issue. Good luck restarting chemo and finding a new protocol for you. In my thoughts.Kris
What wonderful news. Lets hope the surgical team wants to be as aggressive as your oncological team.
Fingers crossed and thumbs held.
Kris
Steve,
My first doctors never used the term cancer with me either. I think it is their way of making it less scary. I dont think it actually works, but bless them for trying.Marion is right, knowledge is power. The more you know, the more frightening it becomes, but then you see the miracles on the board and it gives you hope. There are so many different treatment options besides chemo, radiation, and surgery. From my perspective, it looks like the people who branch out more get better results. Not all treatments can be given to all patients. It depends on size and placement of the tumors but you can ask your doctor about RFA, cyberknife, Proton Beam radiation, Photodynamic light therapy and I am sure there are others but my chemo brain is drawing a blank.
I hope I didnt come across as too harsh. If so, I am very sorry and I do apologise. I just feel that doctors dont know everything and they can only guess. We have a wonderful member named Sophie who has been having severe problems with ascites and had to have them drained weekly. She has been doing this for a year. If you would have asked a doctor, they would not been as positive. Our Jeff lived 10 yrs after diagnosis and Suzanne’s doctors bent all kind of rules and did all sorts of procedures and she is doing fine. Doctors are people that know about cancer, they dont know about your wife.
You are doing your best in terrible circumstances and in that you should take comfort. Your fighting spirit will help Nancy find and keep hers.
Kris
Isisman,
My poop is yellow the majority of the time. In fact, when it is brown it is so rare that I feel the need to announce it to whomever I am with.Kris
Suzanne,
Best of luck today. I am crossing my fingers. You one of those patients whose rollercoaster ride has higher hills and deeper valleys than the rest of us. But somehow, you always beat the odds and come out on top. You never follow the rules or guidelines with cc so I am sure you wont this time either. Wishing you nothing but clear and clean scans to come. Let us know how it goes.And isnt it great that both USC and Clemson are in the College World Series!
Go State of SC.Kris
Kristin,
Bail out? I have waited on radiation for a year and a half, so no giving up.How are you doing? Is that drain settling down? I have been thinking about you and your trip. Werent you going to visit your grandmother?
Kris
I am the worst computer fixer…except for Hans that is. It is the biggest joke among our friends and family that I am the computer “expert” in our house. I still dont know how to take off the password thingy when I start my computer or how to adjust settings. For me, the computer is a glorified typewriter connected to the internet. I can type and point and click and I am still the “expert” in our house.
Steve,
I am one of those people who dont want to know, have never asked and will never ask. And to be truthful it would p!ss me off royally if Hans asked how long I would live. NOBODY is a statistic. As an RN, your wife knows that doctors can only predict what might or will likely happen, but not what WILL DEFINATELY happen.Not to be mean or start some debate or hurt anybody’s feelings, but as a patient sometimes I get so frustrated and annoyed by how some caregivers forget it is the patient who has cc. The patient should decide how they want to procede with treatment (if at all). The patient should set the tone of the journey. Its the patient who gets poked, prodded, hooked up to machines, tested, scanned, and in general treated with pity. It is tiring. And if you think your wife doesnt know the score, think again. CC is rare, but not THAT rare. It also has a reputation in the medical field. My landlord an ear, nose and throat doctor blanched when we told him I had cc. Even my husbands friend who is in 2 yr medical school knew my diagnosis was no good. We nonmedical people might not have heard of cholangiocarcinoma, but the medical field has. Your wife might be in denial, but I doubt she is clueless as to what happens.
Nancy needs you so keep going with her to those meetings. I could not have come this far without my husband. Having an extra set of ears is important and Nancy needs to know she can count on you. Let Nancy lead the way. Now you know she doesnt want to know the answer to THAT question, dont ask again. It is that simple. I can tell you are frustrated over this. Let me suggest seeing a psychologist. Hans and I have one that we meet with regularly…sometimes together, sometimes individually. It really helps and I can tell when we need to make another appointment. It gives both of us perspective and strength to face what we must.
I hope I havent come across as too harsh. I was only speaking as a patient who, like your wife, has chosen not to know what the doctors think. Sometimes I feel that when people are given a number, they count down and not live life. For example if they are given 6 months, they give up the fight at 5 months and then just wait. The psychological battle is as important as the physical one and for me waging that war means not knowing. I hope you understand.
Wishing you and Nancy great news about surgery.
Kris
Jackie,
JeffG had bone mets and like hopeandgrace’s mom they seemed to respond well to radiation (if I remember that correctly). Does anyone else remember for sure?Kris
I am in the same boat so I am afraid I have no answers. I do always repeat my new mantra “live within my limitations” and the key word there is live. I guess I would say my life has definately shrunk, but on the bright side I am more spontanious because when I feel good, I do try to take advantage of it. What that means for me is random meet ups with friends for coffee and movie dates.
I might also suggest swimming. It is a great way to build up your strength but the water gives you bouancy (or however that is spelled) so it is easy on a worn out body.
Kris
Cinnamin.
Glad your dad is home and congrats on a successful surgery. Thanks for sharing about the pineapple juice and hiccups. I am sure it will help others.I am sorry your dad has had such a reaction to chemo. He is right, that is no way to move forward. Perhaps a different combo will be better or he can just decide no more. There are other ways to fight this beast…the best being enjoying life.
Kris
Hi JC,
Welcome to the board. You will find we all pretty much agree with Marion. Get second and third opinions. You will know the right doctor when you find him.Dont fall into the trap that chemo or surgery are your mothers only options. Depending on the tumor size and placement, other treatments may be available. Read up on Photodynamic Light Therapy, cyberknife, sirt, TACE, proton beam radiation and radio frequency ablation. Then ask the doctors if these are options for your mother. Dont forget to ask about drug trials as well. Thinking outside the box can be important.
Take care.
KrisTell your dad that here I am, a year and a half after my reoccurance and still going strong (for the most part). In fact, my sister and I are planning a 2 week trip to Germany as soon as I finish my radiation. My doctor today even used the term “uneffected” in how I live my life in relation to my cancer. Yes, my cancer is still there and yes it has grown.
In my medical anthropology class in college we talked about how people describe their lives and illness. I think the most important thing I still take with me from that class (almost 15 years ago!) is the difference in fighting cancer and living with cancer. If you think of what these words imply, the difference is startling. However, I have chosen to do both…fight and live with cancer. I feel that decision has greatly enhanced my quality and quantity of life. I have no illusions what the likely outcome is, so I try to “live” each day. Yet if you have been on the boards long enough, you do see the miracles. People who responded to chemo enough to have curative surgery. PEople given 3 months and lived a quality life for years. For this reason, I fight. The odds arent good that I will be that miracle, but it could happen and for goodness sake, why not me?
The first couple of months after reoccurance are the hardest. It is then you start researching again and seeing all those statistics. IT is then when you question what is the point of treatment. You hear the horror stories of the final days, the jaundice, the pain, the emotional turmoil. I cried and cried after I had my reoccurance. I spent HOURS, DAYS on the internet looking for the magic weapon that would cure me or make it all go away. I knew there wasnt one, but I kept looking anyway.
For me the reoccurance was more scary than the initial diagnosis. The first time, I had surgery and there was a chance I was cured. The second time comes often with the label “terminal”. Give your dad a chance to digest the news. It is a hard blow.
As to your questions, everyone responds differently to chemo. There have been a couple here who have gone into remission after chemo or a combination of chemo/radiation. It doesnt happen often, but it does happen.
As to time left, that is anyone’s guess and it is a guess. Some people live years after a reoccurance and some only months. There is no one that can give you that kind of information. And you need to ask yourself is that something you or your dad really want to know. Sometimes I feel that when people are given a timeline, they spend their time counting down and not living.
As to the best treatment centers, there are links to major treatment centers under the “Newly Diagnosed” tab. Also dont be afraid to ask your dads doctor about drug trials.
Kris
