ginnyde Posted April 20, 2006 Share Posted April 20, 2006 Carleen, I have nothing but prayers and thoughts to offer you. If only the collective hopes of this site could help Keith. May there be a miracle, may Keith have some relief from his pain. Quote Link to comment Share on other sites More sharing options...
Patkid Posted April 20, 2006 Share Posted April 20, 2006 ADVIL Brian had that kind of pain from his liver tumor. ADVIL helped. Also, Dalaudid is available in pill form. Brian took that during the 15 months they tried to save his right hand before final amputation. It is an old fashioned great pain reliever. But try ADVIL it really helped. Pat Hug Keith and don't forget you have my phone number. I am here and not far away. Quote Link to comment Share on other sites More sharing options...
KarHart Posted April 20, 2006 Share Posted April 20, 2006 Carleen, I am so sorry for all the pain you and Keith are both in. Have they checked his gall bladder? Sometimes this can cause terrible pain in the right upper side. Does he have an internal medicine doctor consulting on him? I know how scary this time is, how helpless you feel. I hope they can get the pain under control so you can begin to deal with what to do next. I continue to pray for you both, please pm me if I can be of any help. Karen H Quote Link to comment Share on other sites More sharing options...
ztweb Posted April 20, 2006 Share Posted April 20, 2006 Carleen, I am so sorry for the pain you both are feeling, and of course, you can count on my prayers. I said one specifically for you last night before I crawled into bed...not even knowing this latest news. My uncle, who joined God about 6 years ago said, "I am not afraid to die, I just don't want to be there when it happens." I so often think of this as a truth. Keep the faith, pray together, and God will pull you through...my neighbor always tells me, "If He can put you to it, He can pull you through it." Quote Link to comment Share on other sites More sharing options...
Linda661 Posted April 20, 2006 Share Posted April 20, 2006 My continued prayers to you and Keith. I wish I had more I could do to relieve the pain. I think someone already mentioned the possibility of the gall bladder.....it does sit in that lower right area (stones could cause that kind of pain as well). xoxoxo, Linda Quote Link to comment Share on other sites More sharing options...
Andrea Posted April 20, 2006 Share Posted April 20, 2006 I am so sorry I agree with others, call, phone conferences, just keep pushing. Please keep us posted. Quote Link to comment Share on other sites More sharing options...
Ellen B. Posted April 20, 2006 Share Posted April 20, 2006 Carleen, so sorry to hear this. Don't know what to say. You both are in my thoughts and prayers. Ellen. Quote Link to comment Share on other sites More sharing options...
Kasey Posted April 20, 2006 Share Posted April 20, 2006 Dear Carleen, You KNOW how special you and Keith are to Fred and to me. Our prayers have never ceased for that miracle. I do believe there are miracles floating around out 'there' somewhere. Fred and I pray that you can just grab hold of one of them. Our collective prayers ARE being heard..........I do believe that. You are a strong team..............try to keep going ~ be it only a day, an hour, a moment at time. We are right there with you. Love, Kasey Quote Link to comment Share on other sites More sharing options...
Don M Posted April 20, 2006 Share Posted April 20, 2006 Carleen, you and Keith have my continued prayers. Don M Quote Link to comment Share on other sites More sharing options...
carolhg Posted April 20, 2006 Share Posted April 20, 2006 Carleen I am so very sorry that you both are going through so much pain and worry. I certainly will keep praying for the both of you. Prayers Quote Link to comment Share on other sites More sharing options...
nikkala Posted April 20, 2006 Share Posted April 20, 2006 Holding you both firmly in prayer. (((Carleen and Keith))) Quote Link to comment Share on other sites More sharing options...
Carleen Posted April 21, 2006 Author Share Posted April 21, 2006 I am honestly starting to believe that all that I pray for is being intercepted by satan who is turning it around trying to break my spirit. How else can I explain the bad news followed by more bad. Everything I ask for I get the opposite. Today Keith and I went back to the hospital to talk to his onc and hopefully get some relief from his pain. After meeting with the onc, he says he honestly believes the pain is from the liver because pleural effusion can cause pain, but it is more of an inconstant pain. Keith's pain is there all the time with bursts of sharp excrutiating pain on movement. Keith had x-rays and ultrasounds taken to rule out any problems with the gall bladder which was the ERs first thought for the pain. But, we were still hoping that having the fluid drained might ease some of the pain, so Keith had a thoreocentesis (sp?) scheduled for after his appointment. We went to that and after about an hour Keith came back out and said they didn't do anything. Apparantly the intervential radiology doctors couldn't access the fluid because they said there wasn't enough there to drain. So, that sort of puts more of the suspect on the liver. After spending 4 hours at the hospital again we finally went home without a plan of action STILL. And no relief for the pain. The onc did write us a prescription for oxycodone. But I am not confident that will help since Keith used to take 85mg of Oxycodone a day on top of Oxycontin without any relief for his shoulder pain. He had just built up a tolerance for the drug and that is why they switched him to the Methadone about a year ago. I suggested the Fentynol patches and he said they were about the same as the methadone. They were long acting, and would take about 2-3 days to build up full strength in the system. He said what Keith needs is immediate pain medication on top of his long acting methadone. Well, Keith's been taking it all evening and he is still in a ton of pain. He can barely walk or move about. He says it is better than without, but it is still registering as a 5 on the pain scale. That just doesn't seem acceptable to me. We did get a call back from the onc at home this evening. He talked to the onc in Iowa, and Keith is going to have an I313MIBG scan on Monday Tuesday and Wednesday to see if he will qualify for another targeted radiotherapy trial being done at U of Iowa. He is also going to be scheduled to get Carboplatin and Taxol on Thursday. I asked about Tarceva and Avastin, but this onc has never heard of them. So, he wants to try another chemo. Even though Keith is so weak, he agreed to do it, and a double agent at that because he is scared and wants to be aggressive because he doesn't want to die. He repeated that statement again today, this time in front of his dad and to the onc. It broke my heart into a million shards of glass. And each shard has a sharp edge that continues to cut deep into my flesh. I asked about Cyberknife for the liver mets to reduce pain, but again, the onc never heard of cyberknife and said he would ask the radiation oncologist if he knows anything about it. The onc did say he might want to try chemo embellisation (sp?) of the liver to try and target the mets in the liver to shrink them. He put in a call to the interventional radiology doc but hasn't gotten any answers yet. So, basically we are back home, still in pain, not too much in the way of answers or relief, there is some plan of action, but I'm not sure if it's the right plan and generally in all I am scared to death and I am back to being saddened to the very core of my being. I just wish there was something I could do to help him. Thank you all for the kind and supportive replies. I don't know how I would get through all this without you. Yes, I do have a large family who is very supportive, but they can't understand. No one in my family has ever experienced a loss like this, and none of them have faced cancer (knock on wood, I pray that none of them ever do). They love and they care, but they can't really understand and can't really help. Quote Link to comment Share on other sites More sharing options...
Linda661 Posted April 21, 2006 Share Posted April 21, 2006 Carleen: I am so sorry to hear this latest news . But, I'll say this much, and I know we all have our own belief systems, but if you are concerned about satan breaking your spirit.....not gonna' happen around here....something is going to work for you and Keith. Personally, as far as I'm concerned satan gets his *ss kicked if I can help it, and there's just plain too many of us pulling for you and Keith for him to win this. May sound bold (probably does), but that's me.....don't mind saying that either if it takes his attention off of you and Keith and points it this way as I am rather a bad-*ss gal when it comes to suffering. You stay strong in your faith and do the best you can, day by day. Probably should have made this a PM, but didn't xoxo Linda Quote Link to comment Share on other sites More sharing options...
Connie B Posted April 21, 2006 Share Posted April 21, 2006 I have to agree with Katie about the doctor not knowing about cyber knife, Traseva, etc. I would be somewhat concerned as well. Carleen, we have some wonderful doctor's that work with lung cancer patitents here in Minnesota at the U of Minn Cancer Center. If I can be of any help for you and Keith in getting things going on this end for you if you would be interested, I would be more then happy to do this for you. What is your thought about the U of Wisconsin Cancer Center? Dave Grant swears by it. Have you talked to him about it or did you look into that already? You are both in my prayers. As for Keith talking about dying, I can only relate to what he is saying and feeling. Just let him talk and get it out. I KNOW how painful it is for you to hear, but it's something that all of us cancer patients need to say and maybe we will say it 10 times, but it just has to come out. It's the only way we can deal with our fear. You both may need to address that issue, and of course your both going to cry and cry and cry and cry. ((((((((((((KEITH & CARLEEN)))))))))))) Quote Link to comment Share on other sites More sharing options...
jdjenkins Posted April 21, 2006 Share Posted April 21, 2006 Dear Carleen, I'm so sorry you did not receive better news or a plan of action from your doctor. I have to agree with Katie. I would not feel confident with a doctor that has not heard of Avastin, Tarceva, or Cyberknife. My Dad received all three in his treatment plan. If you are interested I would call my Dad's doctor at the U of Minnesota and ask if he would take Keith in ASAP. He is just the kind of man that would do that for you both. Cyberknife center is located in St. Paul and Dr. Dudek has referred lots of patients there. I also remember in the being that he said U of M, and U of W had the most advanced Lung Cancer programs. Even better than the Mayo Clinic. Let me know if you need any help. Sending more prayers. Denise Quote Link to comment Share on other sites More sharing options...
KarHart Posted April 21, 2006 Share Posted April 21, 2006 Carleen, Unfortunately, it is true that many onc.'s know very little outside their own experience with treatment. Even at Moffitt Cancer Center Ken's Dr. had never heard of CyberKnife and said you could not use radiaton in the liver. We were lucky in that he was willing to try new ideas and Ken was the first patient there to receive Tarceva with Avastin (I had to push for this). This was the only treatment Ken received that even slowed down the tumors in his liver for a short time. At this point I would push the doctors to treat his liver as if it were primary liver cancer. The chemo-emobilization (sp?) I believe is used for that. CK will probably not be an option, since they only do it if there is only a few (3-4)tumors. I asked for RFA at Moffitt but they said it was not an option (too many, too big I think). I just wish we would have been able to target his liver as if it was liver cancer instead of LC. I don't know if it would have made a difference, but they way I see it, it would not have made things any worse. Pain was never an issue for Ken, any discomfort was easily relieved with oxycodone and morphine, so I am sorry I have no suggestions there. I am so glad you are both still fighting, I keep praying that this will turn around for Keith, he is young, he should get his chance at life. Thank you for keeping us updated, I know it must be hard right now. Praying hard. Karen H Quote Link to comment Share on other sites More sharing options...
dchurchi Posted April 21, 2006 Share Posted April 21, 2006 Carleen, I have been off the board a few days so I am sorry my response is coming so late. I wish and pray there was more I could do. I will honor your request for specific prayer to ease Keith's pain. I hate the two of you are going through this terrible ordeal and have no great words of wisdom. Please find some comfort in knowing Alan and I are praying for you. Quote Link to comment Share on other sites More sharing options...
wendo1974 Posted April 21, 2006 Share Posted April 21, 2006 Carleen, My prayers are with you today, and I am asking Jesus to uplift Keith, and to relieve his pain, and to keep you both strong. I have no answers. Quote Link to comment Share on other sites More sharing options...
hopeandstrength Posted April 21, 2006 Share Posted April 21, 2006 Just wanted to let you know that I'm still praying for you guys. Cathy Quote Link to comment Share on other sites More sharing options...
lindseysmom Posted April 21, 2006 Share Posted April 21, 2006 Carleen, My thoughts and prayers are with you and Keith. I agree with Katie and Connie. I would not be comfortable with a dr. that does not know these procedures. Bests Wishes, Dee Quote Link to comment Share on other sites More sharing options...
jhllal Posted April 21, 2006 Share Posted April 21, 2006 Carleen - I am very sorry to hear about your latest news. I will keep you and Keith in my thoughts and prayers. St. Lukes Medical Center in Milwaukee recently obtained a cyberknife. Attached is the link to more info (you will have to copy it and paste it into your internet browser). http://www.aurorahealthcare.org/service ... /index.asp Lynn Quote Link to comment Share on other sites More sharing options...
Don M Posted April 21, 2006 Share Posted April 21, 2006 Carleen: it saddens me to see you and Keith still suffering so much. You have my continued prayers. Don M Quote Link to comment Share on other sites More sharing options...
kamataca Posted April 22, 2006 Share Posted April 22, 2006 Carleen, I've been out of town and out of touch for a week, and I'm so sorry about all you two have gone through this week. While Keith leans on you, you keep leaning on us--it's what we are all here for. I guess, since I have no real words of wisdom, all I can offer are my prayers. I think you are an amazing person, and I hope this week brings relief and better news for both of you. Kelly Quote Link to comment Share on other sites More sharing options...
cindy0519 Posted April 22, 2006 Share Posted April 22, 2006 Collen, As I read your post I too thought cyberknife or RFA (radio frequency albation). We just looked into ablation for my Dad and I would be more than happy to share with you the Chief of Radiology's (who has done a lot of the current work done with ablation) phone number etc. He and his staff are wonderful! They truly seem to have the patients best interst in mind. He is in Phoenix at St. Joseph's Hospital, but maybe he could refer you to someone closer to home. I know he would look at Keiths records and could tell you if Cyberknife or RFA might work. PM me if you want the information. Praying for comfort for both you and Keith! Cindy Quote Link to comment Share on other sites More sharing options...
mamasbabygirl Posted April 22, 2006 Share Posted April 22, 2006 (((((Carleen and Keith)))))) I am praying for a weekend of less pain for him and less worry for you. I know how all-consuming this is for you. I wish you many moments of holding hands this weekend...prayers and many of them my dear... Quote Link to comment Share on other sites More sharing options...
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