DonnaB

Welcome again Debbie, Just want to confirm all the above: you will find a terrific amount of support, information and a place you can ALWAYS come to. It sounds like you will be a strong advocate for your brother and an encouraging medical team is crucial. If you don't have one now, please seek a second opinion. Everyone here has been on this bumpy road and will provide alot of direction. Wishing you strength, a positive attitude and love, DonnaB

Sandy, Adding my prayers, love and wishes for a good outcome for your tests. I also add my vote for the drugs to help with the extreme anxiety. Love and strength sent to you. DonnaB

I also posted this under GENERAL, since this is not really a trial...I did get a call back a few minutes ago and told them I posted their inquiry here and told them to come to this site to find other candidates that may qualify for their research and $...Some time ago I signed up a the NexCura LC profiler. I received this email today. It says below that they are seeking "advanced stage" participants. If anyone here is interested, there is a toll-free number and email below to get more information. I hope everyone that is eligible will collect the $700 if they want to participate. Here is the email, as received: At some point in the past you used the NexProfiler Treatment Option Tool for Lung Cancer. At the time you registered for this treatment decision tool, you indicated that you would be interested in being contacted by NexCura, which operates the NexProfiler Tool for Cancer, for opportunities to participate in market research. We recognize that dealing with lung cancer can be a difficult experience and that you may not want to participate in market research. If that is the case, please delete this e-mail. We are writing to let you know that a research group is conducting in-person interviews with lung cancer patients. The research group is offering $700 to each patient that is willing to participate in a lung cancer interview project. This project entails: An initial 3-hour interview in your own home A daily 20-30 minute diary entry for one week A follow-up 20-minutes phone interview After the initial 3-hour at-home interview, you would receive $200. After completion of the entire week-long project, you would receive the remainder of the $700. In order to participate in this interview you must meet all these criteria: You must be have been diagnosed with advanced stage Non-Small Cell Lung Cancer. You must be have been treated for your cancer during the past year. Participation in these research interviews is limited and there are additional criteria needed to participate. In order to see if you qualify, you may contact NexCura at 1-877-963-9287 ext.131 or by email by simply replying to this email. Please provide us with a number where you may be reached during the day and the best time to call. If you wish to share this opportunity with others who may be eligible in your area, please have them contact NexCura by email or at the toll free number provided. Questions about this research? You may contact us at: E-mail: interviews@education.nexcura.com Sincerely, NexCura Patient Information Services If you wish to review NexCura's Privacy Statement, visit: http://www.nexcura.com/nexcura/Nexcura_Privacy.asp

Some time ago I signed up a the NexCura LC profiler. I received this email today. It says below that they are seeking "advanced stage" participants, but does not say what they consider as advanced stage. If anyone here is interested, there is a toll-free number and email below to get more information. I hope everyone can collect the $700 . Here is the email, as received: At some point in the past you used the NexProfiler Treatment Option Tool for Lung Cancer. At the time you registered for this treatment decision tool, you indicated that you would be interested in being contacted by NexCura, which operates the NexProfiler Tool for Cancer, for opportunities to participate in market research. We recognize that dealing with lung cancer can be a difficult experience and that you may not want to participate in market research. If that is the case, please delete this e-mail. We are writing to let you know that a research group is conducting in-person interviews with lung cancer patients. The research group is offering $700 to each patient that is willing to participate in a lung cancer interview project. This project entails: An initial 3-hour interview in your own home A daily 20-30 minute diary entry for one week A follow-up 20-minutes phone interview After the initial 3-hour at-home interview, you would receive $200. After completion of the entire week-long project, you would receive the remainder of the $700. In order to participate in this interview you must meet all these criteria: You must be have been diagnosed with advanced stage Non-Small Cell Lung Cancer. You must be have been treated for your cancer during the past year. Participation in these research interviews is limited and there are additional criteria needed to participate. In order to see if you qualify, you may contact NexCura at 1-877-963-9287 ext.131 or by email by simply replying to this email. Please provide us with a number where you may be reached during the day and the best time to call. If you wish to share this opportunity with others who may be eligible in your area, please have them contact NexCura by email or at the toll free number provided. Questions about this research? You may contact us at: E-mail: interviews@education.nexcura.com Sincerely, NexCura Patient Information Services If you wish to review NexCura's Privacy Statement, visit: http://www.nexcura.com/nexcura/Nexcura_Privacy.asp

Welcome Kevin, You will indeed find a great group of supporters here who have been down this bumpy road. I come here often to learn from others and I am moved by all the generous support, compassion, education, insight and humor that is offered. Are you Northern or Southern California? DonnaB

So glad to hear of your Very GREAT news.

Thanks for reporting back. I too would like to know ahead if there is an activity planned next year, or whenever - hopefully in time to take advantage of a low fare on Southwest . It will be great to be in Sonoma County AND visit family AND meet other LC families on the SAME trip. My SIL said that she did not see anything in the local papers or on the radio. Was there? DonnaB

Jen, Thank you for sharing your remarkable bravery. You are part of the strength and hope I find here and reading your story of courage has given me inspiration today. I am going with my husband later this morning for his PET and CT. It has been a bumpy ride with the anxiety for both of us since the last CT which was just about 2 months ago. May we all find serenity, courage and peace today to rise beyond the apprehension and hurdles. DonnaB

Cindi, So glad I saw this. CONGRATULATIONS and thanks for sharing your kindness and spreading hope and inspiration! DonnaB

Andrea, Hearty CONGRATULATIONS to you and your mom on this anniversary. I am sure she is happy and proud to share this time with you. Keep up the good work! DonnaB

Kudos to you on taking this step! I am sure you will be GREAT. I will let my inlaws know about the rally and ask if they can stop by. The inlaws are in Rohnert Park, right next door, but I know Friday is a late work day for them. Hope the event can get some good coverage in the Press Democrat, the county newspaper. Please try to send a 'Press Release' to the editor and health editor on the event. Maybe they can follow up with an article and give them some data to use and refer them here for more background/stories. Please keep us posted. You are so lucky to be in Sonoma County. I always look forward to visiting family there. I was lucky to live there in the mid-late 70s and is where I met my husband Donna B

Debi, So sorry to hear about the loss of your family cat. I know how attached our faithful companions are to our heartstrings by giving unconditional love. You will always treasure and miss your old friend. The unspoken bond and special friendship with a family pet can heal many aches. I agree that after some reflection and mourning, another feline and/or canine companion and personality will find a welcome place with your family. DonnaB

Sending good wishes, positive vibes and heartfelt hope that everything works out and is a good fit for you and yours. DonnaB

I just wanted to share some gratitude with y’all. So much I've learned this last year. Since lung cancer has been put in my life, I have done a lot of self-education about the disease, A LOT of that education being done on THIS board by reading about all of YOUR experiences, treatments, heartbreaking losses, hopes, positive thinking, living with the loose ‘beer trucks’ and monsters under the bed, humor and incredible courage. Although I do not write/post very often, I look forward to reading your wise and many-times humorous postings and compassionate responses to others for inspiration and hope to help get me through the FEAR. I cannot possibly thank everyone, but a so many of you who are regular contributors have helped ME. THANK YOU: Becky, Katie, David P, Connie, Dean Carl, Curtis, Elaine, Fay, Cat, Okdebi, Donna G, Ry, Margaret, Mary Ann, Ginny, Lucie and Don and SO MANY others. The diagnosis and disease of my husband motivated ME to quit smoking – over 13 months tobacco freeeee! I am almost always in the midst of ever-present anxiety of the next set of scans. I am constantly on this board AT WORK(!); LC is ALWAYS on my mind. I have learned to be compassionate about the fact that my husband and many of those I care about, still have the tobacco addiction in their lives. I have learned to TRY and educate others that lung cancer can affect those that have NEVER smoked, or have quit many years before. I have learned to try and be active in promoting early detection for others and be active in the sending out letters requesting that more money be spent on RESEARCH and finding a CURE. I wish my husband would be more pro-active for his own health. I am also learning about anti-oxidants and micro-nutrients and how to incorporate more them into the foods I prepare and supplements I put in front of my husband to take. I pray that the next set of scans will be the next set of Good News for my family and all those affected by this disease. 2003 was a notable year of several milestone events. My beloved mother-in-law passed away from COPD after 6-months of home hospice care. We became first-time late-age homeowners. November 6th this year marks the 1 year anniversary date of my husband’s surgery and living one year with one lung. One year of surviving cancer, 27+ years together. I am grateful that he was back to an almost regular work schedule less than 4 weeks post surgery. We had a small Thanksgiving and Christmas at home last year, the first year we did not travel to family in northern California. We had a trip to Las Vegas just 6 weeks after surgery. In late February 2004, after he completed 6 chemo sessions, we had a trip to Napa wine country for his #51 birthday celebration. We got new living room furniture, a big screen TV and are planning some home renovations. We had a trip to Hawaii in July with close friends – he went snuba diving with our friend’s daughter! We had another unexpected trip to Mendocino in August and my husband learned he cannot be the underwater ocean diver he used to be… . Our daughter quit smoking 2 months ago! We are planning a large Thanksgiving dinner this year at home with my daughter, her boyfriend and some long-time friends. Hubby has the first year post-surgery PET / CT scans next week and onc doc visit coming up right before turkey week, so I am saying some extra prayers this next week to get through the upcoming weeks ahead and needed to share some gratitude for the past year. I am beholden to all on this board and thankful to have this place to come to for support. DonnaB

My deepest sympathy to you and your family in this difficult journey. DonnaB

I do not know if this has been posted before, but I just heard this on the radio this morning for a trial at UCLA. DonnaB http://www.lungcancerprevention.com Requirements for Entry Into the Celebrex Study If you are at least 45 years old, and a former heavy smoker who has quit for at least 1 year --------------------------- OR -------------------------- If you are at least 18 years old, and quit smoking for at least 1 year and had surgery for stage I lung cancer at least 6 months ago Then: You may qualify to participate in an important study on cancer prevention using Celebrex, which is an FDA-approved drug (safer than aspirin) for treatment of rheumatoid arthritis, but has not yet been approved by the FDA for prevention of lung cancer.

Elaine, If you want responses for a dx 2b...My husband’s first symptom (that he has told me about) came in late July 2003 when he was swimming multiple laps in our pool, getting ready for our annual August trip to the wild Mendocino coast and scuba diving for abalone. He had been swimming about 30+ laps every couple of days and one day complained about a very painful “pulled muscle” in his back. The pain went away; however, he went for a checkup in early August 2003 with his internist who ordered a chest x-ray. The Dr. thought maybe he had aspirated some chlorine water into his lungs and gave him an anti-inflammatory medicine. Although he did not complain about anything else, about this same time I became aware that his breathing was sounding a little ‘out-of-breath’ when I spoke to him on the phone and noticed this during other times. Also, he had no cough. BTW, I was the one that had THE persistent cough …had a chest X-Ray in Oct. 2003 and everything was okay…I also quit smoking one year ago this month I will try to get regular x-rays, now that I know so much more about early detection, etc. DonnaB

Looks like a party here! Oh so AWESOME

Dear Dr. Joe, I would like to add my ecstatic welcome to you. I do not post often, but do READ what everyone has to share to educate myself. I have not found as much firsthand knowledge that can be learned about this stuff anywhere else and this board has also given me hope that I would not have found in the medical community alone. At times it is heartbreaking, but so is facing the monsters by yourself. If you are ever in the Los Angeles area, please join us for dinner! DonnaB

Doggies ~ Ya gotta luv em, I lost my beloved 8½ year old Golden Retriever, “Buddy”, this past Memorial Day weekend, due to a sudden and devastating illness that overcame him from nowhere and after incurring great expense at the vet surgeon specialist. Buddy was an ever-faithful friend and companion to me and my husband and his loss for us was immense. Buddy always had a smile and wagging tail whenever we opened the door. He knew when we were happy, sad, mad, or somewhere in-between. Buddy loved to go on trips and walks and thought that anyone that came to our house, came to visit him. The shedding of his golden hair was at times annoying; we always had a lint brush handy for the house, in the cars and ready for guests. Buddy was 6 months old and house trained when we got him. Although I still mourn his loss, I knew that first week he was gone that our household needed another companion and friend. I started going to a couple of local shelters, trying to see if there was another soul-mate there for us, even signed up to be a volunteer at one shelter and started checking the newspaper. One day in the “FOUND” section was a listing for a golden retriever. I called after several days I told the couple who placed the ad that if the owner of the dog was not located, I may be interested in adopting this dog. The couple had two dogs already and they had not received any other calls. We made the long drive to their home and saw “Molly”. Molly has a much different personality from our Buddy, and although we thought we wanted another male dog, we brought Molly home and she is happy in our home with 2 cats and is now part of our family. She does have a couple of bad tricks that we are learning about, like she will get into the leftovers if left out, either on the kitchen counter or on the table. I would like to stop this habit, but may just have to re-train the people. Just wanted to suggest another avenue for finding a loving pet and reiterate those who have written before who love their canine family members. We also may adopt another dog soon. I may investigate applying for being a raiser for Guide Dogs. Other considerations: If pet hair/shedding will be a problem, investigate breeds that DON’T shed – There is not a “shedding season", it is a never-ending process of vacuuming, brushing, getting the hair off clothing and furniture. Consider the size of the dog/breed. Bigger dogs = more food; lifting on occasion and if they should become ill; groomers also charge by dog size. If you go away for a night or more, you will need a dog/house sitter. All dogs need to be seen by a veterinarian for regular health check ups and scheduled vaccinations. All dogs need to be spayed/neutered. I discovered Molly had never been spayed at our first vet visit, so I am looking at another big vet bill to have this done… Hoping you, your mom and dad get many happy doggie smiles and tail wags and big doggie kisses soon

Ginny, I am so very sad. I share in the sorrow felt by so many here. My prayers are sent to you and your family through this most difficult and tremendous loss. Although I am not a regular poster here, but I have been inspired by your strength, caring and love you teach here and share with your Duke. May all love and peach surround you all. With deepest sympathy, DonnaB

Fay, I PM'd you contact information for a thoracic surgeon and onc md at Cedars Sinai. Please let me know if you have any questions or if I can help in any other way. Here is some additonal information about the Cedars-Sinai Cancer Center: http://www.cedars-sinai.edu/3137.html They recently hosted a Cancer Survivors Luncheon which was a testamonial of their dedication to their patients. Donna B

I just found this topic and thought I would add my experience. When my husband was going through his initial tests and was being scheduled for surgery, he was telling his sister that he was going in for a ‘biopsy’ and that there was a possibility that he may also have surgery. He yelled at me and said he didn’t want me worrying her, because he did not want her to call him and start crying. He also told the same story to his office. He also told this story to our 21-year old daughter. He and I were both under tremendous anxiety; I was with him on all the doctors consult visits, getting the MRIs, PET scans, etc. Both his pulmonary doctor and thoracic surgeon wanted to be very aggressive. The pulmonary dr was the one who first mentioned ‘remove the entire lung’ scenario. It was hard for me to confirm his story of ‘going in for a biopsy’ with his sister. I told her that he was trying to give her the best picture, but that I would be grateful for her support and keeping in touch on surgery day. My husband had thoughts that he was not going to make it through surgery. He even postponed surgery by a month so that he could sign up for more life insurance and get more affairs in order for his family…After a 6-hr surgery, the dr came out and told me they took his right lung. After surgery and only 4 days in the hospital, he explained his surgery to his office/partners, as “they carved me up like a turkey and took out a little something they found”. He was back at the office within a week coming home from the hospital, on a partial basis. Our extended families and friends now know everything, including the chemotherapy. His office co-workers and partners do not know the extent of the surgery he had and that he also had chemo treatments for 3 months, as he continued on an almost normal schedule at the office. Even though the extended family and friends know what he has been through, they have no idea of how this disease is always with you, that you are always waiting ‘til that next scan time, that next dr visit and wondering. I have shared more details of what was going on with my co-workers. My boss is a pediatrician and was very supportive. He knew the surgeon and confirmed his celebrated expertise. He even called me in the ICU after surgery to see how everything went. I am hoping to talk my husband into participating in the Relay for Life Survivor’s Walk in our area in August, but don’t know if he will be ready to go that ‘public’. I will wait on that one ‘til the end of July. So, I guess what I am saying, it seems it is a ‘guy thing’ not to want to talk about themselves. We are now going to a nearby Wellness Community for a support group for each of us. Even though the people in our groups have other types of cancers and all of them currently are experiencing more devastating issues, it does help to have a group to talk to about cancer related personal stuff. It has been helpful. I do not think he would ‘discuss’ this stuff on-line, but the group setting seems to be helpful to him. Thanks for letting me vent on this. Donna B

Bob, Sending along my best wishes, thoughts, prayers, and adding myself to your fan club! Also, thanks for sending me here and for your support for me and my husband last December when we felt so overwhelmed. DonnaB

My husband had 6 treatments of Carboplatin & Gemzar: one week with both, one week with gemzar only and one week off. This was over a 3-month period. No hair loss! /some nausea. I looked up gemzar at the time and printed about 25 pages on the drug from the pharmeceutical company's website. Here is a link: http://www.gemzar.com/index.jsp. It helps to read as much as you can about what drugs are given, as not all side effects are always discussed. Our cancer center at Cedars Sinai had card on all the different types of chemo drugs, with brief synopsis. I am sure you could do a Google search for any other drug, or ask the dr for some printed information. Hope it helps. Donna B