Guest HelpingMyDad Posted February 6, 2007 Share Posted February 6, 2007 Hello everyone, I’m new here, and looking forward to learning from all of you and sharing ideas. My Dad is 82, and was diagnosed December 26th with Stage IV adenocarcinoma of the right lung, metastasized to the brain. He has several brain masses, including a large one in the cerebellum and smaller ones in the left and right temporal lobes. The original oncologist felt that surgery was not an option due to the multiple tumors and metastasis. My Dad started on whole brain radiation around January 1st, and ended January 16th. He is living at home with my Mom (also 82, in good health), and they live about a mile away from me. Based on what the hospital oncologists told us, we are focusing on palliative care, and trying to keep Dad at home with in-home services. During the radiation, his appetite was non-existent, and he was extremely tired all the time. Dad's last radiation treatment was on January 16th, and right after that, his hair started falling out...an expected side effect of the radiation. About two days after the radiation stopped, Dad's appetite started to pick up noticeably, which lasted about 2 weeks, but now he is not very hungry. Over the last three weeks, his weight has gone down one pound at the most - he's at 138 right now, which is 17 pounds lighter than last November (he is 5’10”). For now, that seems to be stable. He's still working with an in-home physical therapist three times a week, and has a home health aide twice a week (for bathing and other personal assistance) and a visiting nurse once a week. The PT is pleased with his progress, and he is getting around pretty well with his wheeled walker. Getting up and down is still a chore, but once he is up on his feet he can motor around well with the walker support. He's able to sleep in bed all night now, instead of getting up and moving to the living room during the night. Dad’s mental sharpness and alertness tend to fluctuate, based in large part on how tired he is. Sometimes, he is alert and attuned to conversation and events around him, while other times he dozes off and on, or seems disoriented about the conversation. His language clarity has improved during the radiation and afterward, but still suffers when he is overly tired…as if the effort it takes to articulate clearly is just too much. We really like the current oncologist who is working with my Dad. He agrees that surgery and chemo are not options, and additional radiation for the lung is only helpful if my Dad develops lung-related symptoms, which he doesn't have right now. He said no additional labs were needed...regardless of what they showed, the treatment protocol wouldn't change from what we are doing now, so he feels the tests are not needed. The doctor confirmed that we are pursuing palliative care, and that hospice will be appropriate once the existing home services run out of insurance coverage. The most powerful part of the conversation was when the doctor turned to my Dad, put his hand on his arm, and said "I can't cure you. There is not a cure for your cancer, but we can keep you comfortable. But, if you need to get things in place, like wills or estates, you need to do that now." Dad didn't really react, but that's the way he is...very hard to read what he is really feeling. We did get a prescription for a wheelchair, for his weaker days, and the doctor is tapering down the decadron (steroid) even more over the next few weeks. His next appointment is Feb. 26th. I’m an only child, so my husband and I are the primary resources available to help my Mom and Dad. My highest priorities are keeping Dad at home as long as possible, ideally for the rest of his life, with whatever services are needed to keep him comfortable and free of pain, and seeking out the best treatment options – palliative or otherwise – to help him feel as good as possible. As we go down this stressful, unfamiliar road, I hope to learn from others here who may have walked – or may be walking – the same path. Thank you for making this forum available~ Linda Quote Link to comment Share on other sites More sharing options...
Donna G Posted February 6, 2007 Share Posted February 6, 2007 Hi Linda. So glad you found us and your Dad is so lucky to have you to be there with him. Hope we can be of help. Donna G Quote Link to comment Share on other sites More sharing options...
ernrol Posted February 6, 2007 Share Posted February 6, 2007 Linda, Sorry to hear about your dad. I would consider a second opinion. I was told that there was no cure for my lung cancer. The chemo is what made me cancer free. If they are not giving chemo because they think it will do no good, then a second opinion may be worth getting. Chemo has made survivors out of a lot of people that were told that there is no cure. Stay positive, Ernie Quote Link to comment Share on other sites More sharing options...
Guest HelpingMyDad Posted February 6, 2007 Share Posted February 6, 2007 (sorry - hit the send key too quickly!) Quote Link to comment Share on other sites More sharing options...
Guest HelpingMyDad Posted February 6, 2007 Share Posted February 6, 2007 Hi Ernie, Thank you for your note. The primary reason chemo is not an option is that my Dad is quite frail, and all of us involved (including two oncologists, two radiation oncologists, his family doctor, and my Mom & me) agree that he is not strong enough to tolerate the side effects. If he were stronger, or had fewer peripheral health problems, we'd consider it more strongly, but after three assessments by three oncologists, none of them missed a beat when determining that he was not a candidate. He did have whole brain radiation - 10 treatments - to shrink the existing brain tumors, but the primary lung tumor still remains, and of course has already metastasized. There were at least 4 sizable brain tumors when we started, with a few other smaller ones scattered around - widely dispersed. For that reason, they felt WBR was the best option, to manage symptoms and buy us some quality time without making him terribly ill. If we hadn't already sought other opinions, or if any of the doctors had indicated that chemo would be a good option, we would pursue it more, but the consensus has been that it would cause more harm than good, and would seriously impact his quality of life. With that information, we (and he) felt it was best to maximize his comfort and quality of life and not put him through any more invasive, difficult treatments. I read your "sig bio" - what an inspiration! And it is so wonderful that you are cancer free, and have accomplished all that you have - such as the marathon in the photo. That's great! Thanks again for writing, Linda Quote Link to comment Share on other sites More sharing options...
Judy-OK Posted February 6, 2007 Share Posted February 6, 2007 Welcome to the board Linda you sound like a wonderful and caring daughter and your mom and dad are lucky to have you around to help them. Prayers for you and your family. Quote Link to comment Share on other sites More sharing options...
Guest HelpingMyDad Posted February 6, 2007 Share Posted February 6, 2007 Judy, Thanks for the welcome! I see you are from Tulsa - I was born and raised in Tulsa, and my parents just moved to Michigan from my childhood home there last August! We lived over in the 51st and Columbia area. While I love Michigan, I also miss "home." Linda Quote Link to comment Share on other sites More sharing options...
Guest HelpingMyDad Posted February 6, 2007 Share Posted February 6, 2007 Thanks for the welcome, Donna. I'm really glad to have found this forum - it is the best I've found so far, and everyone seems very supportive and helpful. Linda "Donna G"]Hi Linda. So glad you found us and your Dad is so lucky to have you to be there with him. Hope we can be of help.Donna G Quote Link to comment Share on other sites More sharing options...
trish2418 Posted February 6, 2007 Share Posted February 6, 2007 Welcome, Linda. You'll find lots of useful information from lots of very caring people here. I'll say a prayer for your dad today. Trish Quote Link to comment Share on other sites More sharing options...
Don M Posted February 6, 2007 Share Posted February 6, 2007 welcome Linda. I hope you can keep your dad comfortable and at home. I am 62. I suppose if I were 82 and frail, knowing what I know about chemo now, I would take the path your dad is taking. Between his doctors and you, it sounds like he is in good hands. don m Quote Link to comment Share on other sites More sharing options...
recce101 Posted February 6, 2007 Share Posted February 6, 2007 ["HelpingMyDad"] I’m new here, and looking forward to learning from all of you and sharing ideas. Hi, Linda, and welcome to the LCSC. I continue to be amazed at the wealth of information, compassion, and support offered in such abundance by the members here. Now that you're a member too, I can see that many will be learning from YOU rather than the other way around. You're what folks in Hawaii would call "akamai," which means something like intelligent, perceptive, or "with it." Your mom and dad are lucky to have you nearby. While you already have an excellent grasp of the big picture, over the next few months you'll probably encounter specific events and situations which have never crossed your mind before, and here's where the other members can really help. No matter what it is, there's bound to be someone here who's "been there" either first-hand or as a caregiver, so ask away! One of my daughters, who lives near Kalamazoo, says winter is really doing its thing out your way. The other daughter is in Florida, which has escaped wind chill and blowing snow in exchange for tornadoes. They're both coming out in April to visit their hairless dad... It's been unusually cold out here in Hawaii too, but I'll spare you the details! Aloha, Ned Quote Link to comment Share on other sites More sharing options...
Kaffie Posted February 10, 2007 Share Posted February 10, 2007 Linda, I'm so sorry to hear of your father's diagnosis, it sounds to me like your family has made a wise choice for your fahter. As has been said previously there are people here who have been in very situation you will find yourself in along this journey. My father was also too frail for chemo and we had to make the same tough choice as you. Thanks to hospice we were able to keep my fahter home and comfortable for the through the final stages of his cancer. My heart goes out to you, please don't hesitate to come here for support, venting stress or whatever else you might need. Kathy Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You can post now and register later. If you have an account, sign in now to post with your account.