curlysue50
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Thank you Eric and Alan for the positive results updates on Xalkori. My oncologist seemed to think since my response was so fast that it would be very effective for me. I am only his second patient to actually use the treatment, but I am sure he has read cases on it. I was just wondering if there were other good results out there and it sounds like there are. I had not actually talked to anyone else who had used it yet. It sounds encouraging to hear of others success and hopefully my good results will be with me for awhile!
Susan.
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I have a 3 month follow CT scan on Monday the 11th. Friday the 15th I get results. I am on Xalkori the genetically targeted drug for ALK (anaplastic lymphoma kinase) translocation. A mutation found in my tumor cells. At 2 week of beginning treatment a stopped daily vomiting and went off all pain meds. At 8 weeks my left lung, collapsed with tumor, was open and functioning. Tumor was gone off left adrenal gland and all "nodes" forming in right lung were gone. They called it"significant" response. I am anxious to hear if this response will continue. I am stage 4 and surgery was never option. I did have 4 rounds of chemo (taxol and carboplatin) which only gave me brief stabilty.
I don't know anyone else on Xalkori (crizotinib). I know it is used on a small, specific population with the ALK translocation. I wondered if anyone else is on this drug, either now or were part of the clinical trials and what their experiences have been like?
I will come back with an update when I get results. I good and hope results reflect that.
Susan
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Judy:
I can't speak for Katie's intentions, but from my own perspective I have enjoyed and been given hope by what you contribute to this site. I have been inspired and given strength by your story. You have been through some very hard stuff. This support community has so many different forums with a wide range of topics. So much good information and so many personal stories shared. Some days I am looking for a serious topic to be answered and some days I need to smile because my heart just can't take any more pain of my own or those who are sharing theirs here in this safe place. I have found both here and you have touched my heart. Please know that. I don't feel like there is a wrong way or a right way to use this site. It is for US! LUNG CANCER SURVIVORS!. I truly feel Katie is an advocate for us and has a true love for all of us going through this sometimes horrifying journey. I wished I could give you a big, long hug after I read your post. I am thinking of you! My fellow Michigander!
Susan
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I am very new here. I was very grateful to find a place where were there are other lung cancer survivors willing to listen and answer my questions. Not everyone who visits this site will be comfortable sharing their deepest fears in a forum, but they may be able to read a post from someone else to whom they can relate. And gain some comfort and support. We are all human and all satisfy our needs that suit us best. I like to talk. I ask a lot of questions. I am lookimg for answers on how to live with lung cancer. I have serious questions and I like to hear about what kind of flowers someone planted for their patio. I want to be a well rounded person and don't want my life to just revolve around cancer. When I was going through chemo I had not discovered this site. But, now I have and I have found answers and support for where I am now. I appreciate the people who do post, my thoughts are with those who do not post a question, but gain some insights from the many survivors who have left wisdom and support even though they are no longer here. It is all invaluable. Thank you to Katie B and all those who visitor post on this site. You all give me hope!
Susan
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I was diagnosed with stage 4 lung cancer last August. Everyone responds to chemotherapy differerently. You are doing the right thing to let your medical team know your husband is having a bad reaction. I also had much vomiting and waited for awhile to let my doctor know. I finally called and let them know and they told me to go to my Cancer Centers Urgent Care. I was severely dehydrated and my electrolytes were severely imbalanced. They were able to treat me and gave me other meds for nausea and vomiting. I have a great oncologist and he told me he would rather hear from me and have him be able to make the decision about my symptoms being normal or acceptable. It is not necessary to tough it out. That is what your medical team is for. Chemotherapy is tough, but there are things that can be done for the patient to make it more bearable and safe for the patient. If you are worried about your husband call and let his doctor or on call nurse know what is happening. They should be able to advise you. There is always someone on call in oncology. this is a wonderful place for support and to ask questions. I am still surviving with stage 4 cancer. I made it through chemo. There are lots of resources on this site. All the best to you and your husband. My thoughts are with you as you get through this challenging time.
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We are out and about today. Jim is driving and I am along for the ride. We are at one of his friends projects. He is restoring a house for his daughter that is on the National Historic Register! I will try to include a picture, but I am not always the best at compressing files. I love historical places and love that people will take the time to restore rather than tear down.
Judy, the closest I can probably come to your experience is when I was going through chemo and even though my 3 sisters were all busy with their jobs and families, someone always made time durig tbhe week to stop and visit, take me on an outing to Meijer or drop by some food to try and temp me into eating. I was not much fun during this time. I had to ride an electric cart, carry a grocery bag to vomit into, and ate almost nothing they brought me. But, they did it anyway. I watched Dr. Zhivago with my 11 year old niece. She sat through all 3 hours of it and me getting sick all over myself when I could not jump up to the restroom fast enough. I felt very cared for and loved during a very tough time. It made it bearable.
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I was actually out in the fresh AIR today. I stayed in most of the week, but decided it was time to venture out. It was drizzly or pouring rain all day, the same weather that is headed Janet's way tomorrow. I did some "unshopping". I admit to sometimes doing some recreational shopping. I always keep my receipts and keep the price tags intact. If I do not use or wear it in a month, back it goes. I also needed some household cleaning products. I ate lunch with my husband ( he works about a mile from my favorite shopping center) and ended the day with my grandson and youngest daughter stopping over for a visit. We watched movies, ate a cheese, cracker, broccoli and dill dip plate I threw together and finished off with key lime pie I had made earlier in the week. I am now sitting in my husbands pickup while he and a buddy cut stair stringers in his shop. It is about 9pm and we are going to grab a sandwich before we go home. This is a late night out for us.
Hope you all have great weekends!
Susan
Have a great ret of the day!
Susan
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Randall: thank you for sharing your experiences and insight. I remember when I was first diagnosed I told everyone I came in contact with that I had lung cancer. I could see the pity or empathy in tbheir eyes and how uncomfortable I had made them feel. I did not like that result and told my husband that I was going to remove my "pity pin". The label I was pinning on myself that identified me as a cancer patient. I decided to be myself, instead. Not everyone needs to know my diagnosis. I share with those that need to know or I feel are interested in how I am really doing. I am going to work hard to do some of those special things that make me,me! I will need help. I will try to ask for help when I do need it.
Tonight I noticed a corn field just coming up. The rows were on a slightly undulating hillside. The effect of those curvy rows with the bright green sprouts coming through the wet, brown earth was spectacular. Simple moment, but I was able to notice and appreciate it. Progress!
Susan
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Judy:
It must be the year of the racoon! We have some that have been emptying our hummingbird feeder. I thought it was leaking until I saw the grubby coon prints, sticky all over the feeder. They were also digging up newly planted azaleas in my front yard. I love animals but when they start destroying things in my yard that are important to me, something has to go. And it had to be the coons.
I feel for you Judy!
Susan
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Janet and Judy:
Thank you for being so open and honest sharing your experiences with me here. It really touched my heart and I am not always an "open-hearted" person. In some ways I feel like Janet, that having cancer is my second chance to become the person I felel I am capable of being. I have not always been easy to get to know. Not always expressing my thoughts and feelings openly. I have had friends, but very few that I would really let in. My family fell into that same group. I am the oldest of 4 girls. My youngest sister is 10 years younger and I was almost a mother to her. I was even the person who spent the most time potty training her. I was the chief babysitter and my parents left me home alone with my 3 sisters when I was 11 while they took a week long trip to Minnesota. (I grew up and still live in Michigan). I learned to be responsible early and to not complain. Because frankly who was listening? I was the tough and strong one. I graduated from the University of Michigan on a Saturday and left home to drive to Oklahoma on Sunday morning. Such a relief to be away from those responsibilities of my family. I lived away for 5 years and then returned to Michigan and Ann Arbor where the rest of my family lived and still live. I lived there for 10 years and then went through a divorce. Remarried 1.5 years later and moved 100 miles away. Once again on the outside. I did visit, but got tired of doing the drive. So, once again, I drifted apart from my family.
My immediate family has been blessed to not have any loss closer than grandparents. My grandfathers passed away in their early 70,s, but my grandmothers lived to 89 and 93. I have 3 nieces and 5 nephews and three brothers-in-law. And my two daughters. We had never had a fatal illness in our family. I had reflected on that over the years and knew I was blessed and unusual. Many of my friends had experienced loss in their families. So, when I was diagnosed with stage 4 lung cancer, it was a real shock to my family. Two of my sisters work in cancer research related fields, and they were full of advice and questions. They hovered over me like crazy. I stayed at my parents (75 and 78 years old) home during treatment. I saw at least one of my sisters every day. We talked about things long left unspoken. I could not drive and was totally dependent on them. A real reversal of roles. I needed them and that felt strange. My husband hated me being at my parents and could not get me home fast enough. Once I was done with chemo, he packed me up and took me 100 miles away again, to the area where he grew up and all his family lives. Out in the middle of nowhere. In a rural area where resources are few and far between. Does that sound like whining? I don't mean it to sound that way. I guess I am just saying that spending so much time alone is getting lonely. My oldest daughter lives in Columbus, OH and my youngest is close by, but in a terrible living situation. She does have an adorable son, 4 1/2 years old, my grandson. I see them a couple of times a week.
So, now that things are back to normal I don't see my family so much. I am the one who does the driving and it is usually in conjunction with one of my medical appts in Ann Arbor. So, I guess where I started with this is, I think this is my chance to learn to express myself and appreciate my family members. To let them know I miss them. To call them when I am lonely. No one knows what you are feeling if you don't let them know. I am just not very good at being needy. And I guess for me, to have any need at all is needy. With cancer I do have needs that are different than before I knew I had a terminal illness.
Now that I am as healthy as I will probably be for awhile, I feel like this is my chance to work on the things I thought I would take care of later. I have grown over the years. I have gained confidence and appreciation of myself. Coming to the Hope Summit 2012 and sitting in a room where I knew no one, was really a challenge for me. But, I did it!
I want to have more moments like that in my life, while I still have the time. I don't have so much wiggle room now, for stepping out of my comfort zone and dealing with things I'd rather avoid.I appreciate all the thoughts and support found on this site. I appreciate Katie B. and her unrelenting energy and drive to find early detection and cure for lung cancer. It is a tough fight. It would be so easy to sit back and let someone else do it. I would not wish lung cancer on anyone. But, since I do have it myself, (no choice about that) I want to make the best of it. And make it the most comfortable for those I love. I know my oldest daughter is really having a hard time with this because she lives 5 hours away and has just started a new job, with not a lot of time off available yet. I made a weekend trip with my husband to see her and her fiance. It meant a lot to both of us. Like you Janet, I don't cry in front of my kids, but I know they are hurting. I hope will live long enough that my grandson will have memories of me. I loved my maternal grandma so much. She lived right across the farm fields where I grew up. My oldest daughter is named for her. She lived until she was 93. My girls remember her.
Well, I guess I have taken my fair share and then some today. Thanks for being there and thanks for listening!
Susan
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I am wondering, and this may not be a "fun" question, but a more serious one, how do those of you who are lung cancer survivors keep your strong, and positive faces on for your spouse, partner or loved ones when you are not feeling strong and positive? At first I just wore my emotions out there for everyone to see. Now that I appear better, can drive, and have hair, (as short and curly as it may be), everyone thinks I am on the mend and will be all better soon. For my self I have to remember my doctor saying to me, "We will not be able to cure you." I have stage 4 NSCLC adenocarcinoma. I see lots of folks whose stories include lots of NED scans. It is still early for me, but, from what I understand, that will probably never be the case for me. Some days I can live and not let that enter my mind. But, sometimes it does affect how I am feeling, and my positive mood is hard to get out. I am just not feeling it. Those around me, seem to have an even harder time dealing with it. One of my sisters even said, maybe you will get 10 years out of your chemo drug. To me that seems overly optimistic, but I don't say so because I don't want to bring her down. I am wondering how others talk with their loved ones about their own mortality. Their is a value to being positive, but you also can't bury your head in the sand when the cancer is so advanced that they can only provide you with palliative care, or radiation. Nothing can remove it all. I can accept that, but how do I talk about it with others without making them look away, or down, or changing the subject? I am trying not to be negative, but I still have a terror of cancer that has not subsided. I want to be able to deal and live with that. I don't want to miss out on what I do have.
Susan
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Find a topic that fits the story you want to tell. If you want to introduce yourself then use this forum. Hit the new topic button and write your story. If you want to use the My story forum you can post it there. There is not really a right or wrong way to do it. Put your story where you feel most comfortable. I am fairly new to this site also. I have found much support and information. Depending on your situation there are specific topics you can post on. Members will read and post a response or refer you to a more expert resource if they can't answer your question. I have stage 4 NSCLC and am a 10 mo survivor. Welcome and you are in the right place for support.
Susan
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I hope you know I was only joking Randy! It is sometimes hard to convey a smile when you are writing.(although I. suppose that is what the smiley faces are for!
I see I am not the only one wiped out by extra activity. I took a 2 1/2 hour nap this morning and was feeling guilty. I am thinking there must be vast differences in energy levels in cancer patients. Not that I am comparing myself to anyone, but it seems when you are at stage 4, as I am, your energy can be really high one day and then after a day or weekend of high activity, you can be just so tired. Today I did not even get dressed until 4pm. I had no place I had to be and I figure as long as I am showered by the time my husband gets home, I am doing okay.
Janet I loved your wedding story! 30 years! What an
accomplishment. I have been married 15 years this September, and was married 13 years the first time. My sisters tell me you DO NOT get to add those years together to say how long you have been married. The second marriage has worked out much better than the first. With a church full of lilacs it must have smelled heavenly there for your special day.
I am wondering, and this may not be a "fun" question, but a more serious one, how do those of you who are lung cancer survivors keep your strong, and positive faces on for your spouse, partner or loved ones when you are not feeling strong and positive? At first I just wore my emotions out there for everyone to see. Now that I appear better, can drive, and have hair, (as short and curly as it may be), everyone thinks I am on the mend and will be all better soon. For my self I have to remember my doctor saying to me, "We will not be able to cure you." I see lots of folks whose stories include lots of NED scans. It is still early for me, but, from what I understand, that will probably never be the case for me. Some days I can live and not let that enter my mind. But, sometimes it does affect how I am feeling, and my positive mood is hard to get out. I am just not feeling it. Those around me, seem to have an even harder time dealing with it. One of my sisters even said, maybe you will get 10 years out of your chemo drug. To me that seems overly optimistic, but I don't say so because I don't want to bring her down. I am wondering how others talk with their loved ones about their own mortality. Their is a value to being positive, but you also can't bury your head in the sand when the cancer is so advanced that they can only provide you with palliative care, or radiation. Nothing can remove it all. I can accept that, but how do I talk about it with others without making them look away, or down, or changing the subject?
Have a great rest of the day!
Susan
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I was wondering how Randy knows, with such specific detail, where Jimmy Hoffa is located?
Susan
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Judy:
I noticed a shelf I have at my cottage with built- in picture frames. I have pics of my grandson at about 9 months old in it. He will be 5 years old this fall and I was wondering if I should update them. But I love the photos. I also have one of those collage frames with pics of my 50th surprise birthday party. I keep up a few pictures from the different stages in my life in like- themed frames. The 50th in a collage frame, grandson, Dylan at 2 years in shell embellished frames at the cottage. Some pictures have been repaced over time, but I have tried to keep a small piece of each stage of my family history out somewhere.
Or you could get one of those new fangled digital frames! I don't hav one, but my oldest daughter does. I have pics of my 2 daughters as youngsters in magnet frames on my fridge. I only keep out the pictures I really love and make me smile. The rest of my pictures are in some albums and the rest in picture boxes that I have meant to sort, but never gotten around do doing. Now with digital pictures they just stay in my computer, camera or on a SD card for my camera.
You don't want to forget everything from 10 years ago. And for me, I need those reminders that is for sure!
I hope you get to feeling better soon! I also had carbo/taxol chemo and it really wiped me out. I did not have Neulasta, but it does not sound like any fun at all. At the time, I thought because the effect was so powerful on my body, that it would be really powerful against the cancer cells. Apparently there is not a correlation, but the thought at the time helped me accept it better.
Eventually you do get your strength back. It is just a gradual healing process. I am lucky my blood work was always good,too and my immune system stayed pretty health, so I did not require transfusion. I am sorry you are struggling, but it sounds like you are in good hands and they are keeping a close eye on you! You always seem to have a positive attitude, although I am sure you have your struggles also. Keep on plowing through it, it gets better.
Have a great day!
Susan
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My favorite is: Rubber baby buggy bumpers!
Susan
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Most on my mind? Trying to find a place in the middle where I can enjoy some of the pleasures of summer without wearing myself out.
I did the grilling today. BBQ babyback ribs on our low tech charcoal grill and grilled corn on the cob. In my "quiet time" after chemo I had lots of time to watch daytime TV, which included cooking shows. I actually learned a lot. I thought I knew how to cook before, but the ribs and corn today were the best I ever made. It is amazing how much there is still have to learn. A.nd now I have some time to do it. I will try to use my time wisely and enjoy some things I took for granted or did not pay attention to in my life. Enjoy the little things along the way and listen to the wisdom out there. You can teach an old dog new tricks when the old dog will admit it does not know everything and wants to learn.
Susan
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Judy:
I like your idea. I will play if you get it started. I am feeling a bit brain dead and will need some of your positive creative inspiration to get me kick started!
Susan
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Sorry to stop midsentence. I type most of my posts with my phone and sometimes it gets "hung up", no pun intended. I can't go back and edit or continue my post. I try to not make mistakes, but that does not always work out so well, as you can see!
Anyhow, I might get one more flower basket at the garden center. I took the long way around on that explanation.
Susan
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Judy: I am pretty new here, so I am not sure the daily"air" comes from. My best guess would be similar to what you suggestedc that it was a way for folks to "air out" the things going on in their lives not totally related to the more serious topic of cancer!
I totally relate to you laying low after your chemo. My thoughts and good wishes are truly wish you. I am truly grateful for the oral treatment I am able to use right now. Minimal side effects. Traditional chemo knocked me off my feet, literally. Take care of yourself, I sure hope you get some positive results! Keep up the rest and take care of yourself. Our bodies are truly amazing in their ability to heal and recover from chemo drugs. It just takes time!
You were right about it being too hot for hot tubbing today. I am enjoying the beautiful sunshine in the comfort of my air condirtioned living room. I can look out the sliding glass doors and see nature! I was out earlier, but it is up to 90 degrees. I will go out when the sun gets a little lower in the sky. I may go to the garden center for on.e b[/color]
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Diane:
I agree with Ginny, a guy thing. My husband would have had the best of intentions, but would have potted them just as your hubby did. I am the creative
one. My dad used to say,"Your mom plans the work and I work the plan." There are just some things the average guy sees only one way. Not outside the box. Of course, there are also some very creative guys out there, too. I just don't happen to be married to one whose creative vision matches mine. He has to be given direction and sometimes coaxed if I have my heart set on something being done a certain way.But, I also agree with Ginny that you should learn to love them. It sounds like he went to a lot of effort and work to express his love for you. You can do the same by loving those baskets just the way they are. You can plant them YOUR way next year.
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I forgot to tell everyone that I hope they find a way to enjoy the holiday weekend. I totally relate to not wanting to over schedule my time. I have my Kindle with me this weekend and plan to spend some time relaxing with it. Quiet is nice, sometimes, too!
My husband is laying tile in a large entryway porch. I told him he was welcome to work over the weekend, if he chooses, but he is not to stress me out by engaging me in helping him. I used to help on many of our remodeling projects. In fact, last Spring we hand unloaded about 400 paver stones for our patio. They weighed about 8lbs each. I did not know why my chest hurt so much as we did it. I did not know I was working with one lung. (The other being collapsed with lung cancer tumor). It was before my diagnosis. I am one tough broad!
Have a great weekend,
Susan
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Well, it started out rainy and cool (63 dgrees), but now the sun is starting too peek out and the temperature is rising. Earlier in the Spring I would have said 63 degrees was a warm day, but we have had mid-80's last week or so. It is funny how your perspective changes as the circumstances around you change. It is all in how you look at it!
We have the Senior PGA Tournament going on in Bento Harbor about 11 miles south of my cottage. I am sure they were not pleased with the rain. It is being held at the Harbor Shores Golf Club, a newly developed, Jack Nicholaus designed course nestled along the Lake Michigan shoreline of dunes and woods. It is quite beautiful. It is the first major event being held there. Eric must know a little about golf. Didn't the Scottish people invent golf? Or maybe my historical facts are confused. Anyhow, I don't play, I just enjoy
the lovely lanscaping and flowers.
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Judy:
I guess I should have mentioned that I do use the hot tub, without the "hot" on hot days. Set it about 98 degrees and lounge in it like my own personal pool. A tall glass of iced tea and my Kindle under a large mounted patio umbrella make an ideal spot to relax. If we fill it Saturday am, we might be able to get the phand chlorine right by Monday! If that doesn't work out, there is always the screened porch which is shaded by large, old cherry trees.
And I agree with you, I wish the spammers would stay in there own back yard!
Have a great weekend and you do whatever you need to do to feel good this weekend!
Susan mi
I want to have more moments like that in my life, while I still have the time. I don't have so much wiggle room now, for stepping out of my comfort zone and dealing with things I'd rather avoid.
Awaiting CT scan to check results of Xalkori use
in MEMBER UPDATES
Posted
The Ct scan went well today. Now to just stay busy with other things so I don't worry about what my results will be this Friday morning. It is hard not to think about it, but I keep remembering what my oncologist told me," I put a lot of weight on how the patient is feeling, not just test results, to make decisions." I have been feeling good. With the one exception of a little incident involving an abcessed tooth last Thursday and Friday. Ended up at an emergency room getting it lanced and drained. My biggest relief was hearing my oncologist tell me, it is not cancer related, just a dental issue. I had googled severe jaw pain and lung cancer together and got a lot of hits and panicked. Never thought I would be relieved to have JUST an abcessed tooth. Cancer trumps almost everything, so this seemed minor once antibiotic kicked in. I may feel different after I consult the oral surgeon about getting the tooth removed. Will post an update on results after I get them. Thanks for all the encouragement and prayers!
Susan