thrashej

I am so, so sorry you are going through this. My heart breaks for you and your family. I have no additional suggestions. The only thing I will say is tell your father what he means to you. Don't hold anything back. You don't want any regrets. Even if it is akward for you, DO IT. You will always be glad you did. Peace be with you in such a difficult time.

Lisa, I am so sorry about the passing of your father. My father, too, died of SCLC only 6 months after diagnosis.You post is truly such a great tribute to your Dad. I made peace the way you did and like you am "OK" with it. I think it is a real testament to a person's character when they can see a loved one in such a horrible, distressing state and push through that grief and say what needs to be said. I was afraid of doing exactly that until one night the hospice RN said to me, "Honey, he knows he is dying". I was so scared to remind him of that. Everything in me wanted to curl up in a ball and cry. But I, like you, did what needed to be done. Thank God too, because my Dad will always know how I truly felt. Know that you are a wonderful daughter and your Dad is looking over you smiling. Smile back. Everyday.

I am so sorry. When a family member enters hospice care it makes everything "real". One thing hospice did very well for my father was pain management....and nausea. They deliver the meds right to your door. When you are facing terminal, chronic pain, that is priceless. Pain management should be #1. I am sorry you are losing your father. It was hard to watch my Dad...who always joked and said he would die before he would wear "briefs", become incontinent in the end. Some part of me was thankful he wasn't 100% mentally there in the end due to his brain mets. But who knows how much they really know. It is hard to even think about. Try to stay strong. When my father was in hospice and I had to watch his condition deteriorate everyday it was the most helpless, powerless, I have ever felt in my life. Cancer is running the show. I am so angry about that. There will be days, towards the end, that you will feel like you just can't see the devastation anymore. It is very surreal, actually. You need to be strong for your Dad. He needs you now more than ever. I will be thinking of and praying for you and your father.

Many hugs. So sorry about your situation. I know how devastating the diagnosis of brain mets can be. My father had four lesions at the time of diagnosis. Back then, before the dreaded cancer, I didn't know anything about cancer treatment other than sometimes they get chemo and/or radiation. Never knew anything about brain mets or gamma knifes or anything! My father got WBR, but that was it, and they told us that would just prolong his life by a few months. Nothing was ever mentioned about gamma knife. I was upset about that after my Dad died. My understanding however, is that if you have 4+ mets they do not do Gamma knife. I wonder why???? Anyone know?? If you can remove three, why can't you remove 4? Too much trauma to the brain? Hmmm. You are in my prayers. I hope you get good news. Seek out all the info you can. Get second opinions, multiple tests. BE SURE. You can only do the best you can do, but in retrospect, I wish I had been more proactive and educated about my Dad's condition. He died so suddenly though that I never got the opportunity to research all that much. Stay strong, I know it is hard.

Topotecan is a second line treatment, as I understand. They use it when the first line of chemo was unsuccessful. My father had it after the first round shrunk most of his tumors but did not touch a tumor in his lungs. It kept growing despite. He died a few months later. One thing this website has done for me though is it has shown me how people with this disease DO survive...even those with extensive stage SCLC. Don't give up hope!!! My father gave up hope way too soon. The disease has a poor prognosis, but THERE ARE survivors! Hoping and praying for the best!!

Wow, I so much know how you feel. We went thru the same thing with my Dad. I even posted about "hospice doping my Dad". He was doing the same things your mom is now doing.....even falling asleep STANDING UP!! That said, I will say now that in some ways I am glad they did. It was the Ativan + Oxycontin combo that really did it. Made him a zombie. But if we hadn't he would have been a dying, uncomfortable, anxious mess. Sometimes it is actually better to keep them "out of it". We were glad it went the way it did considering how quickly he died after that. We thought he had all this time left and were angry that they were doping him up but he ended up only having about two weeks from that point. If you do decrease the meds, you run the risk of your Mom having more anxiety and uncontrolled pain. Just a different perspective. I am so sorry you are going through this. It is a horrible thing to watch. I wish you strength! You are doing right by your Mom and are a wonderful daughter! Janice

Lori, I haven't been around in a while...too painful...but I remember you and your mother. I am so sorry. My heart goes out to your entire family. You have done your best and your mother knows that. May God be with you at this time. Janice

I wanted to add that I think they never did lung radiation because the tumor was not in his lung but on the outside of his lung. They did do WBR and those tumors did shrink. But after one round of chemo, another "super tumor" grew in his other lung and I think after he got so sick (needed a blood transfusion) after 2nd round chemo that they thought he wasn't in good enough condition to continue. Plus, the tumor grew even larger after 2nd round chemo. So, it was chemo resistant. Lung radiation would not have baught him too much time I don't think and maybe they wanted him to be as comfortable as possible in his last few weeks/months. Oh well. I can't guess at what should have been done. I know I have to get the rest of my family to quit smoking and I know now that if anyone else I love gets dx with any type of cancer, that I will seek a second opinion. My Dad wouldn't have ran around to a million docs anyway. Plus, he didn't have much financially. Thank goodness for insurance! Thanks all!

Updating to say that Dad died yesterday. I guess it happened pretty quick overall, since he could still get up on Tuesday. They put a Foley catheter in on Wed, by Sunday he was gone. I am so glad it happened like that because they told us the cancer had mets to his spine and right leg. When we would reposition him he could cry out if not medicated. He is at peace now. May he fly with the angels. I will never forget the help and sympathy I got here. I wish you all strength in your battle with cancer. You all are wonderful people. Janice

Updating to say that Dad died yesterday. I guess it happened pretty quick overall, since he could still get up on Tuesday. They put a Foley catheter in on Wed, by Sunday he was gone. I am so glad it happened like that because they told us the cancer had mets to his spine and right leg. When we would reposition him he could cry out if not medicated. He is at peace now. May he fly with the angels. I will never forget the help and sympathy I got here. I wish you all strength in your battle with cancer. You all are wonderful people. Janice

Updating to say that Dad died yesterday. I guess it happened pretty quick overall, since he could still get up on Tuesday. They put a Foley catheter in on Wed, by Sunday he was gone. I am so glad it happened like that because they told us the cancer had mets to his spine and right leg. When we would reposition him he could cry out if not medicated. He is at peace now. May he fly with the angels. I will never forget the help and sympathy I got here. I wish you all strength in your battle with cancer. You all are wonderful people. Janice

I told my father everything I had to say today. I stepped out of my comfort zone and just took the bull by the horns and said it. He, while not altogether "there", seemed truly pleased with what I said, even though I bawled the whole time. I can now say that I will have no regrets. I told him how much I would miss him when he goes but that I know I will be able to talk to him everyday and that he will be in a better place. I told him how proud I was of him for fighting so hard. I told him I knew how tired he was and that it was OK to stop fighting. I told him I (and my siblings) would be OK. We would miss him terribly every day but we would go on. We will take care of my brother, help him if he needs help, no matter what. I told him we all love his so, so much. I told him that he will always be my Daddy and I hugged him and cried. He said very little but what he did say meant a lot. I hope even though he is not really in reality that he knew what I was saying. Ever since that conversation he has barely awoken at all. There is talk now about inserting a Foley because he likely will not move from the bed now. I hope so much that he goes quick from here. Please let him go quick from here. Please let him peacefully depart from this world now to a better place..... I am at his bedside again tomorrow...

I told my father everything I had to say today. I stepped out of my comfort zone and just took the bull by the horns and said it. He, while not altogether "there", seemed truly pleased with what I said, even though I bawled the whole time. I can now say that I will have no regrets. I told him how much I would miss him when he goes but that I know I will be able to talk to him everyday and that he will be in a better place. I told him how proud I was of him for fighting so hard. I told him I knew how tired he was and that it was OK to stop fighting. I told him I (and my siblings) would be OK. We would miss him terribly every day but we would go on. We will take care of my brother, help him if he needs help, no matter what. I told him we all love his so, so much. I told him that he will always be my Daddy and I hugged him and cried. He said very little but what he did say meant a lot. I hope even though he is not really in reality that he knew what I was saying. Ever since that conversation he has barely awoken at all. There is talk now about inserting a Foley because he likely will not move from the bed now. I hope so much that he goes quick from here. Please let him go quick from here. Please let him peacefully depart from this world now to a better place..... I am at his bedside again tomorrow...

My deepest condolences to you and your family. Your Dad no longer is in pain, that is the important thing. Take care of yourself.

You know, I don't really know what happened with my Dad then. He was dx...sclc with mets to pancreas and brain (4 lesions). Dr said options were chemo and WBR to shrink tumors only. Chemo worked on all other tumors but this "super" tumor began growing in the opposite lung despite the chemo. We tried a different chemo...it continued to grow. After that, and the brain radiation, the Dr's told him that there was nothing more they could do and released him to hospice care. Why do you think he wasn't told to "go under the knife" (gammaknife for brain?) I wonder.?? Any ideas???