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KarHart

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Posts posted by KarHart

    They insist they need the lung biopsy

    in CAREGIVER RESOURCE CENTER

    Posted

    Trish, I wonder if this is a new policy. We went to the CK facility in Miama right about a year ago for Ken's liver tumor. They were all set to do it looking at his scans from Moffitt. They never mentioned a biopsy, said we could get started the next week. They were actually rather annoyed when I told them he was going to have a liver resection instead. I wish now we had done the CK, I almost wonder if the liver surgery did not help the spread in his liver since he all of a sudden had mutltiple tumors show up just 2 months after his surgery.

    Help please!

    in NSCLC GROUP

    Posted

    I don't know what to think. I spoke to the clinical trial nurse yesterday and she told me that everyone on the drug had mental confusion. Wow! I was so bounced up. Then I got home.

    It is unbelievable how fast things are changing. The confusion has gotten intense. He is having difficulty keeping his balance and almost fell a couple of times yesterday, but was able to grab on to something. He even told me this morning he did not think he should drive anymore. I am so glad he realized this himself. The biggest change is his speech. He is speaking in a very low tone and the words are just kind of running together. It just hit me, could he possibly have developed brain mets? The speech just started yesterday, the unsteadiness a few days ago and getting worse.

    I don't know what to think. Disease progression, clinical trial drug, brain mets? We will probably get some answers tomorrow. If anyone thinks this sounds familiar please let me know. Thanks.

    Scary Thurs. Coming

    in CAREGIVER RESOURCE CENTER

    Posted

    Thursday is going to be a hard day, I am just dreading it. Ken had scans last Thurs. and we go to Moffitt this week for results. I wish we never had to go, don't want to hear.

    If he has 20% or more progression they will remove him from the clinical trial. He had blood work done 4 weeks ago that the dr. said showed progression in his liver. I finally got a copy of his last scan and it said there were 5 tumors that were being measured in his liver and they all showed progression, but apparently there are even more tumors that are small.

    It seems so strange that he has lung cancer, but it is all in his liver. His lungs are just fine. He is definately showing signs of liver failure. The worst thing is the mental confusion, very frustating for both of us. At least he is not in much pain.

    He asked me last week how much time he had. That was so hard. From the start (15 months ago) I told him we could fight this thing, make it a chronic condition and just go from treatment to treatment. I did research, put him on supplements, pushed the doctors for the latest treatments. I feel like I have really let him down by getting his hopes up. Now I have to tell him its time to let go. I told him he probably only has weeks left, that he would probably go into a coma, that I did not think there would be much pain.

    The dr. at Moffitt has pretty much said there is nowhere else to go now, he has had everything available except some of the older chemos. So Thurs. I expect it to be our last visit. I hate to be so pessimistic but it is so obvious that he is declining, very difficult to see. Our daughter and her new baby came in from WY last night and she immediately picked up on how different her dad is from Christmas. It is really hard on her even though I have kept her updated. It's just different when you see for yourself.

    I guess we will need to call in hospice soon. He does not even have a local doctor treating him. He sees a P.A. at the VA clinic who gets all his records from Moffitt. I hope hospice has a doctor he can see to help manage symptoms, but I don't know how that works.

    I couldn't sleep last night, just kept thinking that maybe I could talk to the doctors about a transplant or they could at least RFA the big tumors to slow it down. I feel like I should keep pushing, but then I know it is not realistic and I know it is not fair to Ken. I just keep praying for more time, this is going to devastate his children, our son (22) is having serious problems but won't talk to us about it. I need to get him some help. I am so worried about everyone and I just don't know if I am going to be strong enough to help Ken die.

    Thanks for letting me vent, I am just so scared now.

    Karen H

    Liver tumors

    in GENERAL

    Posted

    From what I know the liver can take a lot before it is compromised. There are techniques for treating isolated liver tumors like RFA and Cyberknife, these do not involve chemo. It is probably best to seek help at a large Cancer Center Hospital, they will have access to all the latest treatments. Hope your mother improves soon.

    Karen H

    A very long overdue update...

    in MEMBER UPDATES

    Posted

    Ry, so sorry to hear this news. Hopefully, the Alimta will get him back to stable really quick. Have you ever checked into cyberknife? I know they say they can treat areas that have already had the maximum dose of radiation. However, location could be a problem. Since he responded to the Tarceva for such a long time I hope this means he will also respond to the Alimta. Praying for both of you.

    Karen h

    Lucie Update 01/18

    in NSCLC GROUP

    Posted

    A relief to hear "no progression". Ken only had 2 rounds of Alimta and I don't remember him having any bad side effects. He even drove our motorhome from FL to WY by himself during his treatment with Alimta. I hope the new treatment does the trick, sending good thoughts and prayers.

    Karen H

    Mom 5 months into being diagnosed with stage IV NSCLC

    in INTRODUCE YOURSELF!

    Posted

    I think I can relate to how your mom feels. After over a year of watching my husband fight this terrible disease, slowly being eroded more by the treatments than the disease I have become really torn as to what I would do if faced with the same problem.

    We always thought I would be the one to get LC and he had to worry about heart disease. I had the terrible smokers cough and couldn't breathe. My family has the cancer history. His family was early heart disease. When he was dx my first reaction was "no, I am the one who is supposed to get LC". We were both in total shock.

    I know it is still out there lurking for me, I am now proactively looking for it, paying myself for yearly CT scans. However, if I do develop it I am not sure what if any treatment I would go for.

    Your mom is fighting it the way she thinks is best for her and you are really courageous to support her even if you have doubts. My husband is even trying treatments (accupuncture & herbs) with a very reputable chinese dr. You never know. I hope your mom finds something that works for her. Please keep us updated.

    Karen H

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