cat127

Just saw this and I will be glad to help! My sister and I helped our cousin's daughter with her "flat stanley", he went all over Philadelphia, Pittsburgh and DC. It was as much fun for us I think. A postcard is surely quite easy to pop in the mail!

I'm not cut out for running a garage sale, I learned that last summer. My friends and I had one to raise money for the one friend's marathon for the leukemia/lymphoma society. This year we are doing it again to support my ride for the Livestrong Foundation. Last year we raised $520, it was a really great result. However, I found myself going crazy at the people who tried to bargain me down from that 50 cents for a book. IT'S FOR CHARITY, cough up the 50 cents. We decided I'm better at being in the background, sort of the muscle of the operation, moving things around when needed. Years ago my mother had a house sale after my dad died and we were moving from our 6 bedroom house to, well no where actually, moving in with my sister Kelly until we could figure something out. I was not coping well so I slept in. They had the stairs to our 2nd floor blocked with a table and some couple just moved that table and went up and browsed. They told my mum - "you know, there is someone passed out in a bed up there!!!". Poor Mum was like THAT'S MY DAUGHTER, GET OUT OF HER ROOM!. It was quite an experience. I think I'll need to take a day or two off work to recover from our Livestrong yard sale this May.

If you wish to make a complaint that will be heard, you can complain to the IRB - institutional review board. Any clinical studies conducted at a site would be overseen by this board. They would take any complaint, such as feeling like you were forced into participating or you were not 'adequately consented', very seroiusly!

Hey snappy - glad your husband talked with his dr. I know my sister and her husband, and me too, always feel better when we chat with her dr. I may go in with some definitive ideas, but I'm plenty open to hearing his experiences and takes on things. I like that he too is open to hearing my take. In the end, it is quite true that medicine is an art, not a science. Some things are open to interpretation and different drs have different takes on that interpretation. This site, and especially Dr. West's onctalk site, are great for figuring out what the standards are and if what you are being told is similar to what others are being told. Such great resources! Good luck and keep us updated!

My sister had 15 weeks of carbo/taxol and 37 days of radiation with "curative intent". She completed both the second week of October and her surgeon operated to attempt to remove the lung lobe on 22 January (unsuccessful but having nothing to do with the fact that she received radiation doses that pushed to the max limit the field would allow). I think she probably received about 66 Gy of radiation and I believe 68-72 Gy is considered about maximum for the lung + nodes (but my coworker who can confirm that for me isn't in the office right now). So I think it is an overstatement to say "if you have radiation with curative intent you can not have surgery". Also an overstatement to say "surgery must be performed as soon as possible". Though clearly it should be sooner rather than later. My sister's doctors would not do a PET until 2 months had passed after radiation, due to the increased likelihood of false positives on the PET that are due to the radiation and not to cancer. Her surgeon would also not do surgery until he had a PET and could feel relatively confident that nothing new had popped up and that she was in fact 3b. Though if more than 2 months had passed since the PET, he told me he would redo the PET before going ahead with surgery. Again, the key being that he wanted as much assurance as he could get that (1) her nodes were sterilized and (2) no new sites had shown up. Just food for thought, and my way of saying that you will find lots of differing experiences on this board, as well as among the medical community. Your best bet is to talk with your team about the timing of things if they concern you. Based on my sister's experiences, they don't look like they are waiting too long to scan, based on hers, they are scanning sooner than her drs would have recommended, at least based on the PET and radiation treatment. Talk to your drs, they can help calm your worries. Though I do understand sometimes trying to not worry is like trying to not let the sun come up. (also, any decisions would not be made on X NUMBER of radiation treatments, it is based on the DOSE of radiation, often presented as I did above, as Grey's or Gy. Different parts of the body can tolerate a maximum amount of radiation to the field, and the numbers differ dependent on the part of the body). Once upon a time in my life, I worked at a radiation research institute, but I try and block that all out. ha ha ha

Glad to help if anyone has any specific questions, but as others have already said, the doses for those drugs (and we all know it isn't that way for every cancer drug) are dependent on the patient and their weight or size.

Regarding your dad not acting on doing something about the house - what about the possibility of you and your sisters having a lawyer draw up the papers that would be needed to change the lake house to your names. Spell out the specifics if needed - as in you are responsible for XYZ and your Dad gets ABC out of this, including time he can spend there and under what conditions - ie, lets you all know so many weeks in advance or whatever. My point being, I understand a thing or two about being all talk. Maybe if you do the heavy lifting here, you'd have a better chance of getting him to sign the needed documents, rather than hoping he will take the initiative to go get the papers drawn up. Just one small suggestion.

I'm loving the pic of Jack in the Guinness barrel. And wondering - could I fit in that Guinness barrel? I'm all about the great photo-op, always thinking of the future scrapbook page! (note to self, lose some weight before the next northern east coast gathering!) And we had wicked winds yesterday, so much so that my very good friend, who is pregnant and due in about 3 weeks, had a tree go down that not only totalled her car, but her husband's car as well. I say one car is horrible luck, both your cars, someone is telling you something. When in doubt, ya gotta laugh! I just can't believe it, not another car on the street was touched. OY! (pardon the thread drift).

I sure wish I could have made it!! And my co-workers do say I have a genetically innate homing device to get me to Pubs. Hopefully weather, work and flu bugs won't conspire against me next time. Glad you all had fun and can't wait to see the pics!

I'll be curious to hear folks take too, as I've learned a lot from this group about these sorts of things. My friends and I did the relay for life for many years, until the military transferred so many that my team was reduced to very few. We raised a lot of money and certainly had a lot of fun. But I've not done it for a while. Last year we directed our fundraising to the Lance Armstrong Foundation, for a number of reasons. But thanks to this board I became more aware of my need to donate specifically to LC fundraisers. Which is why I love when folks on the board let us know they are doing fundraisers, then I get the chance to put a little money to a great, personal cause and help out the folks raising the money as well! (So keep that info coming everyone). I also have a program through work where we can donate via our paychecks and this year I made sure to look for anything lung cancer specific. So many worthy causes, so little paycheck.

Snappy - your husband's history says that his biopsy showed squamous cell NSCLC? Well then I doubt he will ever receive Avastin, as it is labeled for use in only non-squamous cell form of lung cancer. The clinical trials showed an increase risk of bleeds that appeared more prominent in the squamous cell NSCLC patients (32% severe or fatal bleeds in squamous cell histology vs 2.3% when predonimant squamous cell histology was excluded). In fact, Avastin has a black box warning about fatal hemorrhage. My sister has mixed histology (adeno-squamous) and that also precluded her from being a candidate for Avastin. Just an FYI.

This is just such sad news and more proof of how terribly unfair life can be. Condolences to all who knew and loved Aaron and my prayers go out to you all.

My sisters and I are big pro-cycling fans. There was a race last week out in California, the Amgen Tour of California to be specific. This is a youtube video of a sort of party crasher. I don't think you have to be a cycling fan to get a laugh, as most of my friends aren't and they've all said they got a real good laugh out of it. This video has me certain I need to go to CA and watch this race next year, and hopefully find some funny people like this guy and his friends.

Did anyone else see this? I don't usually watch her, though I often scan by with the remote. And I saw last night (or possibly the night before actually) that she had a little thing on about lung cancer, she also had Dana Reeves sister on there giving some stats. Here is a link to the video. The website gives me the impression that this may be on ongoing thing, news on lung cancer and lung cancer survivors, though the segment didn't necessarily give me that impression. But always good to see some press! http://www.cnn.com/video/#/video/bestof ... cancer.cnn I did a search to see if this was on the board anywhere else and didn't see it. Also wasn't sure what board was appropriate for this, so move it away if it is in the wrong forum.

If your mother had the tumor in the lung and the met to the brain, but no lymph node involvement, that met to the brain would be what is called a 'precocious metastases'. You should go over to www.onctalk.com and see what Dr. West has written about this.

If it is any consolation, I'm bothered by it too! Mainly as you said, how dare someone who hasn't been in those shoes, judge someone who is. Glad they are so sure they'd "move on", but what exactly does that mean. I've moved on, as in I get up every day and go about my life, have fun in it, plan for the future. But every single day, I miss my dad (who died 28 years ago next week) and my mum (who died 8 years ago last Sept). Sorry if that isn't what this person thinks I should do, but what the heck do they know? And I agree, if I were in those early years, when the pain and missing of them was so much more acute, those comments would have stung a lot more than they do now, and would have been no help in helping me feel better about my horrible loss.

Hey there. She's home and recovering slowly. Sort of bites that she's going through all the pain and recovery but without the actual lobectomy. But her spirits are good and she's ready for the next step. Which reminds me I should call the oncologist and make an appt with him for the same day that she has a follow-up with the radiation oncologist. The med onc was in several times at the hospital so he and I have already talked a bit about what the next move should be. The rad onc stopped in specifically on his day off to see her because my niece and I ran into him at a pub and told him she was in there. He is such a nice guy and just wanted to stop and tell Kelly to keep fighting and that he felt confident she'd respond well to whatever treatment we started. Thanks for asking!

Actually the Harvard study showed the opposite. That there was no difference between the groups and in fact that a group that knew they were being prayed for had a higher complication rate. There are some interesting articles out there by the principal investigator where he says something about God not being impressed with their academic credentials. I remember the authors stating after about 10 yrs of study, that they could never control for the fact that people in the non-prayer group were likely still being prayed for by friends and family. As a scientist used to designing studies I remember thinking at the time - well yeah, how did you think you could control praying? They had religious groups praying for some patients and not others, but that doesn't mean no one is praying for the 'control group'. That said, and even though I'm a scientist through and through, I'm also a Catholic school graduate and I pray all the time for Kelly to have positive results from whatever is going on at the time.

The main thing a surgeon will want to see from follow-up scans after your chemo/radiation is that there are no new sites and very importantly, that the lymph nodes, especially in the mediastinum, look clean. My sister was offered the option of surgery when her PET after chemo/radiation showed no uptake in any of the lymph nodes. they will want to be sure the lymph nodes are 'sterilized', ie, free of cancer. If you go over to Dr. West's board at www.onctalk.com, under the thread for 'locally advanced' is a post I made to him about my sister being offered surgery and comments he made, they may be of some help to you.

I think we all have been there and all understand how you are feeling. See for me, this is my job, not from a clinical aspect, but I work with cancer drugs and studies etc. Man, have I second guessed myself. Should I have pushed for a more agressive surgeon for my sister? Because I'm sure I could have found one. But at what cost, and how would I have lived with myself if my pushing had a negative not positive effect. I wish I knew how to tell you to not feel it. I live with some guilt to this day over my mother's death from vascular disease. Woulda coulda shoulda is right. But I know I can't change what happened and I know in my head that so much of it is not really within our/medicine's control. But I second guess anyway. So while I can't tell you how to stop it, I can tell you that I think it is pretty normal. But folks like me who work in this field, we have loved ones that get cancer too. And loved ones that die from it. And people I work with themselves have battled it, some have lost that battle. It is the one thing that upsets me when I hear people say that those of us in the field don't want to cure cancer, because then we would be out of a job. Well guess what, I would give anything to be out of a job, as would all my co-workers. Because we want to cure it as much as anyone, and we don't get a free pass from it. But I digress and I'm taking the thread off course. I guess my point was, folks with much more knowledge than the average patient or caregiver also second guess themselves.

Awwww Katie, that stinks! Hope you are feeling better soon!

We have not talked to the cyberknife folks but I asked Kelly if she would like to at least go and talk to them and she said yes. So once she is out of the hospital and healing a bit more, I'm going to set up an appt as there is one in town. Not sure if she won't be very close to the max radiation that the field can take, but can't hurt to talk to them. Just found out that our niece, who is a nurse at the hospital where Kelly is, managed to get her moved to a private room. Good to have some connections.

Thank you all! I spent nearly all day in the hospital with Kelly. Her mood was actually pretty good. I heard her tell a friend, well I'll just have to be one of those people that wows them with how well I do on one of these drugs. Her oncologist came by, and we do really love him. But he sat on her bed while she was in the chair and just said "well this was a little disappointing". Kelly said to him "oh it's way more than a little disappointing". He just smiled. The king of the understatement, I called him. He looked at me and said "so he wasn't willing to just go for it?". I told him no, and explained exactly why and he was OK with that. He and I talked a bit about the possible options and then he said to Kel, well you have a few weeks to think about it, take time to heal, then you can come in and we can make plans. It's just so hard to see her in so much pain for what really is nothing. Though you are right Katie, we all just said "you had to try Kel, you had to give it a try or you would always have wondered what if". And she totally feels that way too. Though I think she'll feel it more when the chest tube, catheter and epidural come out. I told her how many folks were passing on their well wishes and good thoughts and she asked me to thank you all!

Well unfortunately today did not go as we had hoped. I knew the minute I saw the surgeon at the waiting room door, it was too soon. When he launched into a short dissertation on the anatomy of the left lung, I was certain. The tumor was not able to be removed with just the upper lobe, there was some invasion into the lower lobe. And he would not do a pneumonectomy. Difficult news to hear for sure, especially given how difficult the decision was for Kelly to come to. But we had to try and get the tumor. I hope she doesn't regret having tried, because it was just something we had to try and do. Now, back to the oncologist and time for plan B. This is one of the many things I hate about cancer. The way it throws things in the road that make you have to stop and change direction. But change direction we will and we will keep on fighting. Still several drugs in the arsenal to try! Thank you all for all the kind thoughts, prayers, encouragement and support you are giving Kelly! She's a bit new at the message board concept and it was a big step for her to come on and talk to folks. Maybe she'll talk more once she's home.

I let Kelly know what everyone said, she's very grateful for all your support and prayers. She kept busy today with two of our three brothers coming over and spending most of the late afternoon and evening with her. Our other sister is in town from Philly as well, so we were one brother shy of a full family.