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    Golf & Lung Cancer Advocacy
  1. Just a side light to the article. The author, Mary Feingold, is the wife of U.S. Senator Russ Feingold of Wisconsin. We do have a friend in Senator Feingold. P.S.: My October Scan was as good as the 9 previous scans.
  2. Please take the time to read the following article: http://www.madisonmagazine.com/index.php?section_id=918&xstate=view_story&story_id=185748
  3. With the end of September, I am now a 3 year survivor of NSCLC. It has been an eventful 3 years. Surgery in October 2001, again in September 2002, re-staged to Stage IV April 2003 (mets to lymphatic system), chemo (carbo/taxol) from May-September 2003, liver mets in November 2003, clinical trial for 6 weeks December - January 2003 (terminated due to side effects), January 2004 - all is stable, stability from January - September 2004 (9 months and still counting). During this time I have met very wonderful people, through this website, face to face support groups, via email and phone calls, and through other websites. I have been involved in local news reports and made an ad for lung cancer last November along with other lc survivors. In November, I will be included in the lead story for Madison Magazine, Madison, WI. Three years ago, after investigating lung cancer on the internet, I never believed that I would be alive now. I never expected to be involved in news about lung cancer, nor was I ever seeking this type of notice. As things developed, I realized that I was better off than others, and because of so few people speaking up about lung cancer, I decide to take advantage of this and become a proactive advocate. I am a "charter member" of the Lung Cancer Support and Advocacy Group, University of Wisconsin Comprehensive Cancer Center. I have started, along with the backing of the local hospital, a local lung cancer support group in the community in which I live. I played a role in this website, along with many other lung cancer survivors, and now co-own another for lung cancer support. I have made long time friends through several websites. I want to thank all the people who have offered support, when it was needed. I have done all the above for the sake of lung cancer and have acheived no personal gain out of any of this, other than the friends. To all those who are new to this disease, there are many here who are long term survivors, longer than I, especially Connie, who was, and still is (in the background), my lung cancer mentor. Connie was one of the first lung cancer survivors I becames friends with, shortly after my diagnosis and first surgery. Her phone calls and emails were greatly, and still are, appreciated. Her survivorship gave the much needed inspiration to survive. She continues to provide this same inspiration to many others. So, as Bob Hope used to sing "Thanks for the Memories".
  4. DaveGr

    Estelle Danner

    My wife and I spent several hours with Estelle abd Bob the day before she died. As she used to work with myy wife, and the fact that she had joined the Lung Cancer Support Group at the University of Wisconsin Comprehensive Cance Center, Bob called me within 5 minutes of her passing. All the family was there when she passed. Bob has become a very viable member of the UWCCC Lung Cancer Group and is going to continue with the group, especially making his self available to other husbands, who walking the path he has walked. The messages posted here are wonderful. Just a note on the visitation. When Barb and I arrived at the funeral home, and as I was viewing Estelle, I noticed that there was something missing. She was not wearing her lung cancer ribbon. I removed mine from my lapel and placed it on the pillow next to Estelle. Bob saw me do that, came over and hugged me, then he asked if I had anymore ribbons. I still had some left over from the golf outing and I went out to my car and brought in two packages. Bob took a package and Estelle's sister took the other. Within 5 minutes everyone in the funeral home was wearing a lung cancer ribbon. It was a wonderful tribute to Estelle. I was glad that I had those with me.
  5. Thanks everybody. As most of you know, and I don't know how many times I have stressed this, support is one of the most important tools in beating lung cancer. I have been on both sides of the support and may be on the side needing support again. I also have some good news. I am starting a new lung cancer support group in Baraboo, WI, where I live. I have been working on this for about two months, through the local hospital administrator, whom I got to know through Kiwanis, as we are both members of the local club. We will start meeting in September. I will also continue with the Lung Cancer group at the University of Wisconsin Comprehensive Cancer Center. That is one other thing I like to suggest. Those of you with lung cancer, if you are not able to work, find something worthwhile to get involved in. Being active helps past the time, and being involved in other things, besides things relating to lung cancer, gives you the opportunity to maybe getting away from lung cancer for a while. Many times we get so involved with lung cancer, we don't live our lives as we should.
  6. Hi everyone. I haven't been here for awhile and after hearing the bad news about David Arley, I thought that it is time to update you on what is happening with me. As most of you know I have had a string of stable scans, every month from January through June. The string ended with the July Scan, as one of the tumors in the lower lobe of my right lung, has started growing. I am to be scanned next Tuesday, August 17, to determine the rate of growth. I will be discussing treatment options with Dr. Schiller, following the scan. The treatment options will be based upon the growth rate of the tumor. I have asked to go into another trial and I am sure that is the direction that Dr. Schiller will go with me. Dr. Schiller is confident that we got this early and that I will respond to treatment. I will make an effort to keep all of you up to date as things transpire.
  7. DaveGr

    David A

    This truly a shock for me. I want to thank Rochelle (RY) for her email. I haven't been here much, recently, but David and I would trade email's at least once a week. I will miss his humor and the love which he had for those of us with Lung Cancer.
  8. I haven't been on for awhile, so I guess an updste on several things is in order. The golf outing netted $6100 for the University of Wisconsin for Lung Cancer. The golf outing was slightly different this year. It raines most of the morning. The golf pro had the Great Lakes Radar on the internet. We were watching what was happening very closely. We were to start at 1:00 PM, and it was still raining at 10:30. The radar indicated that the rain would pass and there was nothing but clear weather to the west to include all of Minnesota and Eastern Iowa. We started right on time. Everything was going well. About the 4th hole, we all noticed that a large cloud buildup was forming to the north, righ over Wisconsis Dells. We also noted the clouds were not reaching Baraboo and they were moving east at a very fast clip. By the time we were playing the 7th hole, the temperature suddenly droped the winds shifted to out of the north and the clouds main a 90 degree right turn and slammed right into Baraboo. It rained steady for about 1 hour, however in that one hour the golf course gauge measured close to 2 inches of rain. The creek, which meanders throughout the course overflowed its banks flooding several fairways. The outing was obviously over. The dining room crew jumped right in and started setting up the dinner in the dining room. We originally had a tent set up for the dinner. We awarded all the prizes by drawing out names from a hat. We put eveybodies name on slips of paper, made a quick count of the prizes and it looked as if we had enough prizes for everyone. Everything turned into a party atmosphere and it worked out great. Now, on a more serious note. On july 21, 5 days after the golf outing, was my monthly scan and oncology day. It didn't go well. The run of 6 months of having stable CT Scans has ended. A new tumor is growing in the lower lobe of my right lung. Being Stage IV, I am not a surgical candidate. Dr. Schiller is having me come back August 17, at which time I will be scanned again. We will then talk about treatment options, especially clinical trials. I have always asked for a trial and Dr. Schiller fully expected that I would now. This period gives her some time to review the available trials and pick out the ones that I qualify for. The wait also will give Dr. Schiller and her research team an idea of how fast the tumor is growing. This will be my 6th battle against lung cancer in the last 3 years. Dr. Schiller is very optomistic that we have this one early. I will keep you posted when we find out for sure what the plan will be. I am confident I will beat it again. I have been successful each time before and I will be successful again.
  9. WALC has a petition posted at their web site http://www.4walc.org There is a link to the petition on the Home Page. Dr. Schiller needs thousands of names on that petition before it will really get the attention of Congress. So not only should everyone here sign the petition, your family members and friends should sign it as well. She has asked me to get the word out that this is not only necessary to get action, it needs to be a top priority for signatures. PLEASE, PLEASE, tell all your friends about this.
  10. I have been off all treatment since January, when I had a side effect to the trial drug ZD6474. AstraZeneca has requested that I remain being followed every 6 weeks with scans and oncology appointment. I just have adenocarcinoma w/o BAC. I am Stage IV because of systemic mets to my lymphatic system discovered in April 2003. Also, after successful treatment, ending on September 2, 2003, with a scan the end of September which showed shrinkage, stabilization, and disappearence of the lymphatic tumors. I was scanned again the middle of November 2003 in which they found that I developed a tumor in my liver. That was when I was entered into the ZD6474 vs Iressa study. When the side effects set in, and the side effects did not clear up, I was informed that I was on ZD6474. Because of the side effects continuing I was terminated from the study. The drug, however, apparantly worked the liver tumor has remained stable since January. Stable is GOOD!!!!!!!
  11. I now have six months straight of stable scans. It has also been 6 months since I have been on any kind of treatment. I have been treatment free since the middle of January 2004. Next scan and oncology appointment is July 21. Fingers, toes, eyes, and everything else is crossed for making it 7 months. I feel great, have been golfing and am getting ready for the Lung Cancer Golf Outing July 16, with funds raised going to the U of Wisc Comprehensive Cancer Center for Lung Cancer Research. We raised $6000 last year and the goal is to double that this year.
  12. I was at the WALC meeting on June 4th and heard Sarah's teleconference with WALC in person. Sarah is very sincere about what she wants to do. As many may know, or not know, Sarah is a Lung Cancer Survivor. Her immediate gaols are to start with the magazines, especially Glamour, which voted Sarah Woman of the Year while she was campaigning for gun control. Becuase of her reputation on the gun control issue, she obviously has the inside track with many in the news media. She says lung cancer needs a face and she is coming forward to be that face. I compliment her for her courage. She received a standing ovation at the end of her presentation and teleconference.
  13. Everyone, thank you for your comments. Just to elaborate on some of the issues brought up, these were things that were discussed at the meeting. The hormonal possibilities are in the forefront of all the researchers. A vast majority of the women being diagnosed with LC are in the non-smoking and never smoked class, which, of course, has raised many questions. The outlook, over the next few years, however, is not good. It is expected that the number of women dying from lung cancer, in 2005, will more than double the number of deaths due to breast cancer. Lung cancer is now THE NUMBER ONE DISEASE effecting women. Lung cancer is now at epidemic proportions in women. When one considers all this information, it is no wonder we want urgency with research and money for research. Many of the women, which were mostly oncologists and oncology nurses, came up to me and congratulated me on my survivorship. I reminded them, however, the sense of urgency among all of us, who are survivors, is very real. We want to see research become reality in our lifetime, whatever that may be with us. I have to say this, all the women who were present, to include the few women survivors who were there, are very dedicated to the cause of lung cancer. It was very inspirational to hear this dedication, as, sometimes, many of us think our doctors treat us as if we are just another patient. With these women, and even beyond these women, many in the field of treating lung cancer, are very serious about bringing this disease under control. The only thing holding them back is money. Again, thank you for your comments. We are not alone in our quest.
  14. I attended the Women Against Lung Cancer annual meeting Friday, June 4, 2004. The meeting was held in New Orleans, preceding the ASCO meeting. I was invited to attend by Joan Schiller, president and founder of WALC, and also my oncologist. WALC awarded me a Grant to attend. For me to be in the same room with many of the major lung cancer oncologists and researchers was a very humbling experience. Also, I was the only male patient advocate to attend. There were several other women patient advocates in attendance as well. I also enjoyed meeting some of the people I have been corresponding with for the last couple of years, but had not met personally until this conference. The emphasis of the meeting was on advocacy. An issue that I brought up is the urgency which many of us have with our disease. Because of the high death rate many of us want things done now, which has not been possible. My read on the stigma is that it is pretty much behind us. It is recognised that smoking is still the major health risk in the US and is linked to many diseases besides lung cancer. Now that it is being recognized as such, the question remains as to why the number of women with lung cancer is rising as each year goes and it has now reached epidemic proportions. As was emphasized, at the meeting, the death rate of women with lung cancer will, most likely, double that of breast cancer this year. The problem is that the public and general medical community are failing to recognize this fact. The highlight of the meeting was a teleconference with Sarah Brady, wife of Jim Brady, and the backbone behind the Brady Gun Bill. Sarah is a 4 year survivor of lung cancer. She wants to make a statement on behalf of lung cancer and is willing to use her reputation and recognition for the purpose of finally putting a face with lung cancer. She discussed several persuits that she will be using on this behalf. For me it was exciting to hear this and to have someone of her character and recognition to publically state that she has lung cancer. There is sure to be much more coming on this. There were 3 "breakout groups". The group I met with discussed mediums to be used to persue public recognition. One thing that stood out was the suggest of obtaining the services, pro-bono, of a public affairs company. I, personally, believe this may be the way to go. It appears that WALC will become proactive in this role. There was media and pharmaceutical company representation present at the meeting and there were very positive comments from them in this direction. I want to thank WALC, especially Joan Schiller for her encouragement, for inviting me and allowing me to attend this meeting. I look forward to becoming more involved with this organization.
  15. Definition: FRILLY-DILLY: a circumcision done with pinking shears.
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