KarHart

We did not go to TN, Ken just wasn't up to it. Good thing since they had major snow, I've never driven in snow. Friday night Ken had a bout of major pain in his abdomen. Sat. morning he woke up with a fever. I finally was able to get him to go to the ER. Thought maybe it was his gallbladder since his last scan said he had gallstones. They admitted him and did tests and basically said they thought it had to be his liver. The gastro dr. seemed stunned after seeing the scan. I had told him he had multiple tumors in the liver, but I don't think he was prepared for how extensive. I saw his last scan and there are just huge areas of tumors. They basically said there was nothing to be done. I told them we wanted to be discharged as quickly as possible. Of course he started running a fever again and the nurse seemed to think we should contact his dr. but I told her there wasn't anything to be done and we just wanted to go home. It is really hard since Ken does not want to go into hospice. I think he feels that hospice will make things go faster. I am not going to push him until things get worse. He is having episodes of confusion and memory loss again. I know this is from the toxins building up. We are trying to arrange for our daughter and his daughter and son to all get down here in a couple of weeks at the same time. I am just not sure if that will be soon enough. I asked the gastro dr. how long he thought he had, but he said he never makes those kind of predictions. From my research I don't think it will be more than 3-4 weeks but there could be some kind of catastrophic failure, I just don't know. I was so sad to read about Joel. I am so glad to hear that Fay is going home. It just made me so angry that she was trapped in that hospice. I hope she will be able to find the peace she so deserves. It has been very hard to read posts lately. Thank you to everyone for all your prayers and good wishes. Karen H

I had everything set up with hospice, but I could tell Ken was not ready to see them. So I went back to researching clinical trials. I found a Phase I at the University of Miami. At first the clinical trial nurse did not think he could qualify since he has had docetaxel. However, I read the exclusion criteria and it said "progression with docetaxel within a year". Well, it has been a year since he has had it. I called back, she checked with the Dr. and he said I was right and he should come. We have an appt. next Weds. Right now I am trying to get all his records from Moffitt sent down there. It is a long shot that he can get in, his blood work is borderline right now. Hopefully, it won't change in the next week. We are leaving tomorrow to go to TN to see his granddaughters's cheerleading competition. I will probably have to do the driving which is going to be rough. Ken always drove when we traveed. I am not much of a long distance driver so I am giving us plenty of time to get there. Right now Ken is doing o.k. He is having more pain in the liver area, but his mental confusion has really cleared up. Apparently, it was caused by the clinical trial drug. He has definite symptoms of liver failure, but I don't think anything is critical yet. It really is hard to just let go and say no more. I know we are really close to that point, but I feel like in order to have a miracle you have to do something so God can make that miracle happen. Maybe this will be our miracle, I can only pray. Karen H

This is just the best news! CK should knock the rest of it out. I am sure the collapsed lung was not fun. They decided not to do a needle biospy on Ken for that very reason and did the liver instead. It is just great that no cancer showed. Cure is a magical word. Karen H

Terri, please add my prayers, I am so sorry that you are in pain, I hope they can get it under control quickly and you will be able to go home soon. Karen H

Hi Nancy, I remember you too, good to hear from you again. Hope your PET scan comes out o.k., let us know how you are doing. Karen H

Sue, I know that was hard to hear. Hopefully, they can get the infection under control and Mike can continue treatment. Sending more prayers. Karen H

Sue, how terribly frustating. I hope Mike's doctor can give you some helpful info today. Prayers continuing. Karen H

Brenda, I am so sorry. I know how hard it had to be on you and your family. My husband has battled with this choice. Not due to pain, just not wanting to die a slow death. The fact that I would lose a major benefit is what has stopped him and I am grateful. This horrible disease takes so much from everyone involved. I hope your family finds peace now that he is no longer suffering.

Peggy, it was good to hear how you are doing. I think of you often and the other wives who have lost their partners. I admire the courage you all show and I hope that I will be able to be as strong when I will have to move on. Karen H

Larry, my deepest condolences to you and your family. What an incredible marriage you had. What a blessing to have such a large and loving family. Karen H

Hi Karen, Actually, I asked the dr. yesterday about RFA. He was highly doubtful but said he would talk to the radiologist. Apparently, there are too many. I am pretty sure that he has too many for CK and they are too big. I had looked into that a year ago when there was only one. I told the dr. I knew that it would not cure him, but it seemed that if they did the big ones it could at least buy more time. Sometimes it is just hard to accept that there is nothing left, but I am trying. Karen H

First, I want to thank everyone for all the wonderful support and prayers. I was really in panic mode the other day and it really helped to read everyone's post. Pat and Peggy, thank you. I so much now understand what you have been through. Your encouragement and understanding really touched me. I am so lucky that Ann lives here in the Melbourne area. She has been wonderful. It is good to be able to talk to someone and her experience has been like a mirror. She has already filled me in on a local hospice. I am trying to get set up with them now, have to get Moffitt to order it. Ken is off the trial drug. The tumors in his liver are progressing at a terrible rate. The index tumor was not measured, the report said it merged with 2 others. There are just so many, it seems mostly in his right lobe, but also many smaller ones in the left lobe of the liver. His BP was very high, 175/105. I am concerned that he may have had a small stroke on Tues. That was the day he was so confused, really out of it, was staggering, and his speech became slurred. However, Weds. morning he was back to "normal". The dr. was not concerned, just said to start taking baby aspirin. I am just worried that he could have a stroke that would destroy what quality of life he has left. Does anyone know of preventive treatment for strokes? Does it seem like he may have had one? Again, the caring that has been shown has been such a help. I really did not even realize how much I needed it. Thank you so much. Karen H

My heart goes out to you and your family. Karen H

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.

Mark, Leslie was such a bright light on this board. She is sorely missed. Karen H

I know how scared you are, it is such an awful feeling. Even if the chemo trial he is on does not work he is not out of options, there are other drugs that may be more effective in his case. Just hang on and look for support here, you will get it. Karen H

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.

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

Said a special prayer last night for a special lady. Karen H

Hope and pray that Mike starts to recover soon. Hopefully, he will start doing a lot better today. Karen H

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

Glad to hear she is doing well. Hope she has a quick and easy recovery. Karen H

Cheryl, I am so sorry to hear about Jake. Prayers for comfort and peace. Karen H

Such a sad time for so many. I am so sorry for your loss. Karen H

Just stunned and terribly sad. Karen H