CTsang1234 Posted January 24, 2006 Share Posted January 24, 2006 Hi all, I'm glad I found this site. My name's Christopher, the son of a 69 year old dad who has stage IV LC and brain mets. Dad was diagnosed on 12/2/05 while hospitalized for stroke like symptoms. The found a 5.8 mass on his right upper lobe and some irregularities in his brain. After a few CTs, it was found that he had a large brain metastasis in his right frontal lobe, and a smaller one in his left side. We were setup with a treatment plan that the brain mets were "treatable", and then they'd treat the lung with chemo. During dad's hospitalization, they found blockage on both sides of the charatoid arteries. They were going to evaluate the arteries after the radiation treatmeant to the brain mets. Dad finished up 10 treatments of radiation to the brain on 12/28. He was feeling pretty good, but was getting tired every day. One week after his 10th treatment, he was really wiped out. All he wanted to do was sleep. On 1/5/06, he was hospitalized because he wasn't able get up. He was dehydrated and still wanted to sleep. The following days after his hospitalization, something happened. He became incoherent and wasn't able to open his eyes. For about a week, we was getting IV fluid and the doctors were adjusting his meds. He was on Decadron. They have been slowing the doseage down. Fast forward to today, the 23rd. He's been hospitalized since the 5th of January. The doctors do not believe his mental state will return. We have been told to contact hospice. My dad is 69 years old and was "healthy" up until the 5th of January. He's now confined to the bed and will open is eyes and talk a little bit. His mental state still has not returned. Has anyone experienced this? The oncologist says that people with his condition, mass and mets, the average life expectancy is 2-4 months. With dad's current condition, we're not sure where we are at. We can't watch him suffer and need to make sure he's comfortable. Chemo is out of the question, as they want to make his remaining time comfortable. The problem that I have, is that he is not comfortable. If he knew what type of condition he was in, he wouldn't want to continue. Sorry for the long post, I'm just frustrated that after a short time after his radiation treatment, my dad has become like this. We are working with the hospice team to see what can be done to bring him home. If anyone has experience with hospice and when you knew your loved one's last days was, I'd appreciate to hear about it. Thanks, Christopher Quote Link to comment Share on other sites More sharing options...
Donna Posted January 24, 2006 Share Posted January 24, 2006 Hi Christopher, I don't have any experience with this but wanted to offer my prayers for you and your dad.. Donna Quote Link to comment Share on other sites More sharing options...
Maryanne Posted January 24, 2006 Share Posted January 24, 2006 I am sorry to hear the depressing news about your dad's decline. Hospice is wonderful and they should be able to make him comfortable and control his pain. I pray for peace for him and strength for you to help you cope. Be there with him as much as you can and always let him know how much you love him. Maryanne Quote Link to comment Share on other sites More sharing options...
jdjenkins Posted January 24, 2006 Share Posted January 24, 2006 I'm so sorry to hear of your Dad's quick decline. Have they done everything possible to find out why your Dad is in this mental state. You stated that they told you people with lung and brain mets only have 2-4 months. Well my Dad had a huge tumor in his lung and a brain met and was alive for 15 months with treatment. You may want to get another opinion. If nothing else it will give you peace of mind. If you do get another opinion you will have to be removed from hospice, but you can go in and out of hospice several times under Medicare. Hospice should be able to tell you the signs to look for in approaching death. For my Dad they all came very fast. One day he was up enjoying a New Years Dinner with us, and 5 days later he was dying. I pray that you can get more time with your Dad, but also that he does not have to suffer to receive that time. Denise Quote Link to comment Share on other sites More sharing options...
kimmek Posted January 24, 2006 Share Posted January 24, 2006 Hi and welcome.....I have nothing to offer really except prayers and maybe and idea. Contact another doctor for a second opinion? I by no means have "seen" it all, but this just doesnt sound like anything ive heard before. Especially for someone who was healthy one day and not the next. There has to be a reason for this mental decline, and just that he will not regain it to prior capacity makes me wonder why?? There are always doctors that just give up if they dont understand, and then there are ones that will push to find out why and help. A second doctor may tell you the same thing, but at least you will know you tried all you could for him. This is a wondeful place to come if you have questions or you just need a friend. PLease keep us posted on your Dad and take advantage of all this board has to offer. Again welcome. Kim Quote Link to comment Share on other sites More sharing options...
Ry Posted January 24, 2006 Share Posted January 24, 2006 When choosing a hospice make sure you look at all choices and get recommendations if you can. Hospitals often try to send the person home with their hospice program and many times they aren't the best. So ask anyone you know in your area that may have used a hospice what their experience was like. Is your dad on pain meds? Maybe some of the confusion is the choice of medication? Doesn't seem he should have declined so quickly mentally. Quote Link to comment Share on other sites More sharing options...
Don Wood Posted January 24, 2006 Share Posted January 24, 2006 Christopher, so sorry your dad has declined so fast, and so sorry you have to go through this. We had hospice for my mother-in-law (she was in a nursing home at the time)and my family had hospice for my brother (he was at home). Both experiences were positive. A good hospice team will keep him comfortable with minimal pain. My heart goes out to you. Don Quote Link to comment Share on other sites More sharing options...
cindi o'h Posted January 24, 2006 Share Posted January 24, 2006 Hi Christopher. I can relate almost verbatim what you are going through. My Dad went into the hospital with a "brain tumor" walking and talking and after surgery, had no more speech or walking abilities. I don't know if he was even still in there. I know what you mean about dignity. My Dad wouldn't have wanted to see himself like that. It did turn out that he died without ever coming out of the hospital. It may have been a primary lung tumor that had metastisized to his brain. We will never know, as the biopsy was lost from surgery to pathology!!! If only we had crystal balls, Christopher. I understand your state of confusion. Get second and third opinions. Insist on it! Keep in touch with us. We care. Cindi o'h Quote Link to comment Share on other sites More sharing options...
karen335 Posted January 24, 2006 Share Posted January 24, 2006 Have you gotten a 2nd opinion? I hate WBR. Doctors don't understand it. I am sad to read this news about your father. Research as much as you can and read, read and be his advocate. Doctors don't know how much time he has, it is just their guess. Each person is different. Don't give up, never. Keep on fighting this disease and get another opinion... If you have to use Hospice, ask Ry for advice. She is very knowledgeable. Prayers, Karen Quote Link to comment Share on other sites More sharing options...
sharyn Posted January 25, 2006 Share Posted January 25, 2006 Christopher, I am so sorry. My Dad had radiation to his brain and did not fare well at all. I believe that for some people it is just not the best thing. Unfortunately, we don't know until we try. There are others on these boards who have had radiation to the brain and are doing well... so I can't explain why what helps some actually hurts others. My Dads experience was similar to your Dads... rapid decline after the radiation was finished. He also had declining mental abilities and just never go better. I will pray for you. I do encourage you to seek out help through hospice. They should be able to guide you along the way. Love, Sharon Quote Link to comment Share on other sites More sharing options...
karen335 Posted January 25, 2006 Share Posted January 25, 2006 Hi all, I have been a member of this board for almost 3 years. I am NOT a doctor or claim to be one. I too had radiation to the brain. Mets from the lung. I had Stereotactic radiation. I can only share my experience and research with you. There were several members, who had WBR and shared their experience and research with others. I am NOT trying to tell you which treatment to choose. I am trying say, exhaust all of your options. I don't want to sound like this is a mortality treatment, but I haven't read on this site where it has helped anyone. I am thankful I had many many people on here who cared enough to say to me don't do WBR, research first then you decide. I did research. I made my own decision, I was scared too. I know doctors sometimes want to rush us into treatment. We are scared and have no experience. The unknown is very frightening. I would like to share my brain met story. I had a tumor in the Cerrebellum area, removed surgically April 2004, it was incapsulsted. Had stereotactic radiation, June 2004 for any micromets left behind. Radiation onc. at LARGE Cancer Institute said, you need WBR. I said why, he said that's the protocal. My nuerosurgeon said NO. I have radiation Necrosis now and can have it surgically removed and no return, once removed, no return. I called the radiation onc. and told him what I was going to do and without seeing my scans, he said you have cancer again, you need WBR. You can have Stereotactic (also known as Gammaknife) for up to 6 mets. My Nuerosurgeon made arrangements to send me to another facility for PET/CT scan. I am so thankful I have a good nuerosurgeon.. He teaches (Professor)at a large hospital, here in CA. for adults and pediatrics. I hate to say this, but multiple treatments is money in the treament centers pocket. One treatment is less expensive. I don't want to offend anyone and I hope I haven't. I truly care and want to make you aware, you may have other options. I was in such a whirlwind when this journey started. I was just thankful I was directed to this site and had so many people to share their experiences and treaments. It saved my life. I THANK RICK AND KATIE. THEY ARE THE BACKBONE OF THIS WONDERFUL SITE... Prayers for all of you and your loved ones, Karen Quote Link to comment Share on other sites More sharing options...
trishnmiller Posted January 26, 2006 Share Posted January 26, 2006 Ditto to everything Karen said. I refused WBR for my husband and went to Gamma Knife. Well, you can read the profile. I would ask a neurosurgeon to evaluate your Dad's mental state. Is there necrosis that can be removed? One doesn't just suddenly fail mentally so there is a medical reason that needs to be spelled out for you. In the meantime just know you are doing the best you can and keep on being there for your Dad. Prayers to you both. Trish Quote Link to comment Share on other sites More sharing options...
CTsang1234 Posted January 26, 2006 Author Share Posted January 26, 2006 Thanks to all who have replied and to all who are praying for my dad. It's hard to say if his condition is improving or worsening. Since I see him daily, I think I am more in tune than the rest of my family. He's spiked a fever every day this week. They've taken him off of IV Fluid, as he's eating and drinking plenty at meal times. He is now off decadron and has a time release pain patch to ease his pain. They are monitoring his temperature and head aches. We are working with the Hospice lead at the hospital. We will be transferring him to a skilled nursing facility soon. I do wish that I could have found this site before we agreed to the radiation, but who knows what would have happened if we didn't do the treatment. Will update again... Christopher Quote Link to comment Share on other sites More sharing options...
Miami Janet Posted January 27, 2006 Share Posted January 27, 2006 Hi Christopher, I am so sorry to hear of your Dads decline. I know most people have a good experience with hospice. If you want to bring him home someone will need to stay with him as hospice only visits and helps out unless there is a crisis and then they are there 24 hours. Once the crisis passes they cut back again. I ordered a book called crossing the creek and it was pretty informative on the dying process but I unfortunately got it a day before my Mom passed away(couldve used it sooner) If you think you could use it I will mail it to yu. Hope your Dad is able to remain peaceful and comfortable. PM me with info if you want the book Janet Quote Link to comment Share on other sites More sharing options...
CTsang1234 Posted January 27, 2006 Author Share Posted January 27, 2006 Hi All! I wasn't sure if starting a new topic was appropriate or if I should just add on to this thread... Thank you all for your stories, prayers, and thoughtfulness. It's very nice to see a board full of loving and caring individuals. We met with my dad's oncologist today. Due to the rapid progression in my dad's condition, we really never had a personal oncologist. When my dad was hospitalized in Nov 2005, and Released in mid Dec 2005, we were seen by the hospital oncologist who had a well known practice in our area. We were given the treatment plan for radiation and chemo. Because we started the radiation first and my dad was admitted to the hospital, we never made it to the first visit to the oncologist for the chemo consult. Fast forward to today. We were able to discuss with the oncologist my dads condition. Things are not good. My dad's diminished mental state is still the same and he is getting worse. He is eating a lot still and still has his bodily functions, but his circulatory system is slowing down, especially seen in his legs. We asked what could have caused the rapid decline. The Dr could not tell us whether it was a side effect of the radiation treatment, or if he had a small stroke that we weren't aware of. In any case, we now have to deal with my dad's passing. He's spiking fevers and now has a persistant cough... We found him a great skilled nursing facility which he'll be moved to next week. He is to restless for me to take him home and care for him. When the time comes in his last days, we'll want to bring him home. That's my update on my dad. Thanks again for the nice warm thoughts and prayers. Christopher Quote Link to comment Share on other sites More sharing options...
karen335 Posted January 27, 2006 Share Posted January 27, 2006 Christopher, Prayers for you and your dad. Just keep him as comfortable as you can. We are here for you and truly care. Please keep us posted... God Bless and prayers, Karen Is your father taking Decadron? Quote Link to comment Share on other sites More sharing options...
RandyW Posted January 28, 2006 Share Posted January 28, 2006 Christopher, I cn't give you advice. My wife went ot the hospital Friday the 20th January and died at 3 am Jan 23. She was supposed to start a round on the same day she passed away. Hospice provides a great service to us I researched it and that may have been our downfall. BUT we will say many prayers for you and your family at this time. Quote Link to comment Share on other sites More sharing options...
Carleen Posted January 28, 2006 Share Posted January 28, 2006 Christopher, I have no words of advice, but just wanted to welcome you to the site and let you know that you, your father and your family are in my prayers. Please come back often and let us lighten some of the tremendous burden that is LC. We do care, and will all be praying that God bring your father comfort and relief in his transition, and that he brings your family comfort and peace as you go through this with him. God Bless Carleen Quote Link to comment Share on other sites More sharing options...
hollyanne Posted January 28, 2006 Share Posted January 28, 2006 Christopher - I am so sorry for what all of you are going through. Hospice should ABSOLUTELY make your dad comfortable...there are a lot of things they can do. No one has a crystal ball and can tell you if this is the end...yet hospice can tell you signs to watch for...and their goal is comfort for the patient and the family. They were right on with my mom once we were to the last week of her life...I know it is different with everyone. I absolutely credit them with the fact that my mom died painfree and calmly without any agitation or struggle. I know my mom's faith gave her great peace. If you want to talk, please let me know. Holly Quote Link to comment Share on other sites More sharing options...
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