KarHart
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Posts posted by KarHart
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Ken and I went to Moffitt yesterday for a consult on the clinical trial drug, whether to continue it after the one week break. His blood work was very troubling. All his liver function tests were very elevated, big jumps. The LDH was over 2000 (high normal 613). He is going to start the clinical trial drug again for 21 days (if he can tolerate it) then he will have scans. The dr. seemed very concerned about these test results. He had never mentioned them before. I have been keeping an eye on these values and they all really went up. If anyone has any experience or knowledge about these different liver function tests I would really appreciate hearing about it. Anyone knowing what happens with liver failure please let me know what to look for. He is definately having some memory problems and confusion. He is not jaundiced. Thank you as always for all the support and care.
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Carleen,
What a sad, hard choice to face. My honest opinion is no, you probably should not try to get pregnant right now. I can understand how much this is something you both want, but right now you two are facing an incredible battle. Your stress level has to be as high as could be tolerated right now. Trying to get pregnant by in vitro is a difficult and stressful process in itself. Bringing a new life into the world is a huge responsibility and right now I think you need to concentrate on Keith and what you have together now. Of course you want to keep a part of Keith with you forever, but pregnancy itself can be difficult and caring for a newborn is always a challenge. This does not seem to be a good time to make such a major, life changing decision. I am very sorry, this is probably not what you wanted to hear. You asked for honesty, but that doesn't mean it doesn't break my heart to advise against it. Whatever decision you make I hope it works for you and Keith. I'll be praying for you.
Karen H
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Very happy for you. I am glad you have been able to move on to this next chapter in your life. You are always trying to make us feel better and it is so good to see you happy! Best wishes.
Karen H
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Dear Pat, a terrible loss to you and all of us. What an inspiration you and Brian have been, a lesson in courage and dignity. He will be greatly missed.
Sadly,
Karen H
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Carleen,
It is absolutely heartbreaking to read about how much pain you are in. It is obvious you are scared about a lot of different things now. I am worried that you are dangerously depressed. Please find a professional to start helping you now. Many of us are much older than you and have already gone through tough heartbreaks in our lives. For someone so young it can be really difficult and just overwhelming. You need to talk to someone who can help guide you through this awful time and who will be able to help you later. This monster disease can also destroy the lifes of the loved ones of the person who is battling it. You need help to fight your own battle. All of us here understand what you are feeling and we will help anyway we can, but please seek help from a counselor who is trained to help you deal with your fears. I am so sorry that you and your husband both are in so much pain. You will be in my prayers.
Karen H
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Bunny,
I am glad to hear that things are improving for your mom. Not being able to read has to be really hard (coming from an avid reader). I think it has been a really hard year for a lot of people and it does just get you down. It's hard enough to just have to deal with someone you love being sick, it's not like every other problem is considerate enough to just go away. It's good you found out about the B-12. I've been deficient since the birth of my son. Ken gives me monthly shots. I can really tell when I am getting low, so make sure you stay on top of it, cause you need all the energy you can get. Good luck.
Karen H
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Pat,
I have been off the boards the last 5 days. It was so hard to read about Brians struggle. I am so glad you were able to get relief and have a peaceful Christmas. You both continue to be in my prayers.
Karen H
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Wishing you a very happy Christmas.
Love,
Karen
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Cindi, I'm proud of you too. I am amazed that you manage to handle all of this even if you do fall back a bit once in awhile. Hope you will be able to enjoy this holiday season.
Karen H
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Lynda,
I am sorry to hear your mother is having such a hard time. I know there is a liquid appetite stimulator. My husbands doctor gave us a bunch of sample bottles, but he has not needed it. Can't remember the name but I am sure someone can tell you. Of course there are all kinds of anti-nauseau medicines, she really needs to try something, cause as you said it is very important that she eats. Good luck.
Karen H
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Ann, Beautiful, you made me cry.
Love,
Karen H
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I'm sorry Mike is having such a hard time right now. I hope the tests and procedures get him feeling good for the holidays. Prayers on the way.
Karen H
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Amazing and wonderful.
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Thank you so much everyone for all the great suggestions. With a new baby in the family (our daughters) I am surprised I did not think of some of them myself. He insists he is doing better, it was just a really rough weekend and we were out of town. Went over to Orlando, we were going to go to MGM to see the Osbourne family Christmas lights, but he got really sick so we are putting it off. I told him we could go back for my birthday (28th), it's only a little over an hour away. Hopefully, he will adjust to this new drug and we will make it next time.
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The best news for the holidays! What a wonderful present to your family.
Karen H
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So very glad to here how well it went. Hope all the treatments are as easy and side effects minimal. You just keep fighting this with everything you have and we will all keep fighting and praying along with you.
Karen H
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Ken has started a new clinical trial drug, only the 4th one in a phase II trial to get it. He takes 3 capsules twice a day. While he has had a constant problem with diarrhea since he has been in treatment this time it is really bad. Not to be indelicate but his bottom is really hurting. He's tried Prep H and Prep H wipes but nothing is helping. He says if this keeps up he is going to stop the drug. Does anyone have any suggestions for relief? Immodium is the only OTC drug I can find and it is not working. Thanks.
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Beth,
I am so sorry for your loss and pain. I know it is so hard now. I will continue to keep you in my prayers. Please continue to let us know how you are doing.
Karen H
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Amie,
This is so stressful for you. Hope you get "good" results today and your mom can go home. It is so scary when something unexpected happens. Your mom has been doing so well, hopefully this will be just a minor problem. Love and prayers your way.
Karen H
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I am so terribly sad to hear this. Prayers and love for this so difficult time.
Karen H
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Leslie, what a terrible shock! I am so sorry to hear this news, but with your fighting spirit I feel that if anyone can beat this you can. Hopefully, you can stay on the Tarceva since it has been holding it back everywhere else. You have always kept my spirits up and I hope we all can help you now. You will be in my prayers.
Karen H
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Well, I have been chewing the nicotne gum for 2 years now. Someone told me they knew someone who was still using it after 10 years. Nicotine does not cause cancer. I am not aware of any particular bad effects from it. The way I see it it is a lot better than smoking. I had a terrible, horrible cough that was so bad people were really concerned about me. Turned out it was my husband who was diagnosed with LC after we both quit. He did it cold turkey. Our 22 year old son was just hospitalized for an asthma attack. It was a big wake up call and he is really trying to quit. He is using the gum and I am trying to encourage him not to get as hooked as I am. So, yes you can get very addicted to the gum, but you are still better off than smoking. Good luck!
Karen H
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Well, maybe it is a very old one. Due to a recommendation from a family friend, I talked Ken into going to see a Chinese dr. in Orlando. Ken said he was not doing any accupuncture, when I asked him why, he said he thought it was "quackery" at least for something like cancer. However, to make a long story short, there he was yesterday afternoon, sitting with 5 needles in his head. We also got a herbal formula he will take 2x a day. He will go back 3x a week for awhile. My mom also went for her arthritis and had immediate results, so she and Ken will be going together.
I don't know if there will be anything to this or not. This dr. saved my mothers friend husbands leg. He went to him for a long time and she saw many of his patients with cancer get better. He has also been featured in the news in Orlando. Because of her absolute faith in his treatment we decided to give it a try.
Ken is also starting a clinical trial drug next week if he passes all the tests. It is a daily pill, taken twice a day. I think it is the same type of drug as Tarceva, but attacks a different molecule. He will have a scan after 28 days, so we will know then if the accupuncture, drug or both are working. At this point I am willing to try just about anything, we have run out of options.
Karen H
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Great article! I particulary liked your personal statement at the end. It is wonderful what you and other members on the board are doing for lung cancer awareness. Thanks to all of you for your efforts.
Liver values
in NSCLC GROUP
Posted
Thank you Fay. I had actually done a search and found a post where you had detailed liver failure before. So far I don't see any symptoms except some memory confusion. He has had fatigue every since he started treatment a year ago so I don't really count that. He has been tolerating this second cycle of the clinical trial drug really well. I am hoping that he will be able to go back to the maximum dose. You said these were symptoms you had so I am so glad you were able to bounce back from that. Hope your current problems get better. Thanks again, you are always right there.