aceking

Sheri, I PM'ed you this message, but for those who may find it helpful, I am appalled by your family's behavior, and until recently i would almost think that it would be impossible for a grieving family to act this way. But...one of my dearest friends, Marc, passed away on August 29th. He is why I'm on this board. His cancer diagnosis began my quest for information and options for him. His funeral was Sept. 2nd, 2007. He and his beautiful wife were living in his father's/stepmother's condo (paying the morgage and the homeowner's dues, but not the property tax.) He got married 2 years after his diagnosis (in fact, not even a year ago) and his wife gave up everything to care for her husband. She was most assuredly the reason that he survived as long as he did. He was in MAD LOVE! He passed away quite suddenly at 37 y/o, and while his widow, Felicia, thought she had the support of his family, his father called her a week after the funeral and said that she had to be out of the condo by Sept. 30th because they needed to rent it at a profit!!!!!!! Not even a week after her husband's funeral!!!! I couldn't believe it! SHe gave up everything for her husband! She was not working. He was everything! She was the reason that he lived 3 years and 2 weeks with stage IV NSCLC!!! It turns out that the father had feelings of remorse and called her a week ago crying and said "I don't know why I did that! I'm sorry, you can stay/" Well, now she has to be out by Oct. 31, but she feels that her relationship with the family is still intact. As far as I'm concerned, I still think that it's shameful to expect her to get rid of all his belongings, get a job, and move out all in 60 days time. Well, whatever. People act strangely when their loved ones pass away. The greed comes out. Front row center. People are petty. Stingy. Not seeing the forest for the trees... Anyway, just wanted to say that i relate. Be strong. Debbi

His funeral and memorial service were on Sunday. Wow, what a hard day. I had my own feelings of deep sorrow, which paled in comparison to his family's It still seems so surreal to me. I can't believe he's really gone. Even though, in the Jewish tradition, anyone who wanted to could put a spade of earth on top of the lowered casket, signifying in a way, blanketing the loved one in earth and forever protecting and comforting him, I was like "No way, poor Marc is really in that hole in the ground??? " I've been to many Jewish funerals - mostly elderly relatives- but I had such a hard time with a 37 year old being covered with earth. His father cried out "OhH!, Marc" in utter despair, as he put his spade of earth in, and it was heart wrenching! A father should not have to bury his son!! Everyone was sobbing. On the other hand, everyone in my company who knew and loved Marc, was at the service - even those who had to change travel plans for Labor Day weekend. He was so loved!!!! SO many musicians, composers, singers and people who Marc touched in his life traveled to the service. It was 1.5 hours away from LA, and 105 degrees that day. And dry. But that service was SOGGY, if you know what I mean. The lesson that Marc taught me is to not get caught up in the small stuff. Live your life like it's your last day on earth. Leave no message unsaid. Take pleasure in the mundane and the regular. Revel in the unexpected. Give. Laugh. Love. Feel. I miss him so much! I feel like such an inadequate person in his shadow. He was so honest, loving, funny, giving, and hard working, even up until his death. The one thing that I can offer right now is that I thought of creating a formal summer music internship program ( in Marc's memory) with his University - the Berklee College of Music in Boston. HUM ( my music company) would arrange to take on 2 just- graduated interns per summer and train them to work in the "music for advertising and television" realm. That was Marc's passion. He was on the Board of DIrectors at Berklee, and a huge advocate for them. It's the least we can do, giving other graduates chance in a field that is very competitive and hard to break into. Marc would be smiling! Sorry for the rant. trying to cope. Debbi

It is with immense sadness that I communicate that my dear friend, Marc, passed away last night after a long and courageous battle with NSCLC. 37 y/o nonsmoker. He was an amazing soul, and constantly defied statistics and "probably will"'s. He was diagnosed just over 3 years ago with stage IIIB/IV NSCLC. He lived life to the fullest and had a pretty amazing quality of life for someone who was deemed so "sick" He hiked, biked, vacationed, worked full time, surfed and spent time with his beloved bride until just before the end. No oxygen, no nothing. Marc fought the good fight. With spirit. With amazing courage. And with dignity. He was a newlywed, and his wife gifted him with a love that, although short, was more than most people know in a lifetime. And he, in turn, gifted his wife, and all who loved him, with the remarkable human being that he was. He f-ing raised the bar in terms of how to make the most of your time on earth. He was such an inspiration to me. He will be so missed. [/i]

Hi everyone. My friend Marc has been on Navelbine for the last 5-6 months (NSCLC Stage 1V). He has had good results and has remained stable. Just got his latest test results yesterday and is still STABLE!! Yay!!!! He has been fighting this beast for 3 years and is doing fantastic (as far as I'm concerned). He has been through a gazillion different chemos and is just holding steady. He is 35 y/o and just came back from a vacation with his wife in utah, where he went on canyon hikes everyday!!!!!! He has not needed oxygen at all yet (thank god). He has a great quality of life and I am so grateful to this board as I have found out so much info on different treatments for him that have literally saved his life. (I am the little LC research angel on his shoulder.) THanks.

Interesting topic. My Dad smoked True Menthols like a chimney and had terrible coughing and emphysema symptoms since i was a kid. Ironically died of liver cancer, not lung. My Mom smoked those aweful Eve 120's! The cigarette with the weird flowers around the filter that were SUPER LONG! My Mom stopped cold turkey 8 years ago after chain smoking for 50 years. YAY!!!!! Way to go Mom!!! I totally understand the pull and the addiction, just wish that more people could quit.

Hi. My aunt, although she didn't have lung cancer, had breast cancer and a gnarly!!!! case of chemo brain that lasted about 6 mos. and still has very minor residual effects. However, my aunt is a civil rights trial lawyer in Chicago, and although when she had chemo brain (and took a leave of absence from her practice) I would not have hired her as my attorney NOW, I would NOT mess with her!! She is back on her game! occasionally forgets directions, but that's about it. So keep the faith. It comes back. Debbi

Thanks, guys! I am on ichat with Marc right now, and he is blown away that people have already responded to my post.

Hi all. Need your help. My friend Marc has had progression again (NSCLC Stage IIIB). Small nodules in both lungs, 1 mediastinal lymph node involved, now one abdominal node involved. No spread to other organs. His onc is now going to put him on Navelbine by itself as 4th line therapy. I know that Navelbine is often prescribed along with a platinum drug, but I've never heard of it used alone. Has anyone had good results with this?? Thanks. Debbi

Hi. I'm writing on behalf of my friend Marc. He has NSCLC IIIB (now probably upstaged to IV due to tiny nodules in both lungs). He had GREAT results with a combo of Avastin & Gemzar and has had no treatment for over a year However, his scan last week showed slight progression of the nodules - his onc- Dr. Natale at Cedars Sinai in LA is doing a clinical trial that he would like to enroll Marc in in July. It is for high dose Iressa. I'm confused because I thought Iressa was pulled from clinical trials. Has anyone heard of this high dose clinical trial?? Your thoughts are greatly appreciated. Debbi

Hi Don! Your support and strenght to this board is unbelievalbe. I am one of your and Lucie's biggest fans. In terms of AVASTIN, as I've mentioned in other posts, my friend Marc had no success whatsoever with Chemo and Rad until they tried Avastin. (He heard about it from me and my knowledge of people on this board!) He is and has been totally stable since July( on one treatment) on Avastin, and hasn't even had to take avastin since July. His cancer (Adenocarcinoma stage IIIB) is totally stable/dormant!!!!! So, I am a HUGE fan of Avastin! My thoughts are with you. Also - no side effects! Please reply with any questions/concerns you may have. His doc is Dr. Natale at Cedars-Sinai, Los ANgeles. Good Luck!!!!

Tracy, has anyone mentioned Avastin? My friend, male, also non-smoker 36 y/o was diagnosed in August of '05 with NSCLC IIIB. Nothing worked until he tried the Gemzar/Avastin combo. He is now totally stable and has been since July, and is living a totally full, active, athletic life. His next scan is in July. Right now, everything looks shrunk/dormant!!! He did have radiation, but was not a candidate for surgery. My thoughts are with you. You have a wonderful, caring and protective auntie. She will keep you strong through this. Welcome.

Hi all. I rarely post here, but my mom sent me this and I think you guys will get a kick out of it. The picture on the nightstand After a long night of making love, he notices a photo of another man on her nightstand by the bed, he begins to worry. "Is this your husband?" he nervously asks. "No, silly," she replies, snuggling up to him. "Your boyfriend, then?" he continues. "No, not at all," she says, nibbling away at his ear. "Is it your dad or your brother?" he inquires, hoping to be reassured. "No, no, no!!!" she answers. "Well, who in the hell is he, then?" he demands. "That's me before the surgery."

I will say that cancer sucks!!!!! My father was an extremely heavy smoker all my life, and never quit entirely until the day he died. He actually died from colon cancer that metastasized to the liver , but it was always lung cancer that i feared because of his respiratory problems and constant coughing. DConstant I left the proverbial family nest prior to realizing that it may be an emotional issue for all./

Hi Trish. I'm glad you "came out" and are no longer lurking. I have found so much support and great knowledge form the people on this site. I'm replying just to let you know that my friend Marc, also diagnosed with IIIb, and also, after mediastinoscopy, was deemed inorperable (at the time) due to lymph node involvement, has had great success with a combo of Gemzar, Alimta, and Avastin. I know each person is different, and each case unique, but it may be worth asking your doc about. Marc had been on "traditional" chemos without much result, but is really responding to this new cocktail. I wish you the best of luck and remission. Take care.

Too funny. and irreverant. If you watch "Curb your Enthusiasm", you'll find a tie in. Your attitiude is awesome

You are awesome in your strength and attitude. I reply b/cmy friend Marc is also a patient of Dr. Natale's! He (as I wrote in the forum) the first patient to be approved for Avastin @ Cedars, but I've heard that Natale is UNBELIEVAAABLE!!!! These types of stories make my heart soar! I believe wholly in Marc, who was given 9-16 mos (if you go by stats) and is working on his 17th month, skateboarding, hikeing and living life to the fullest. He doesn'r have to have any treatment until at least Feb '06!!!!! YAY!!!! YAY DR. NATALE!!!! DEBBI

Hi, Ohiokat! I can only imagine the stress that you go through wondering if your cancer is stable. I am not a medical expert, however, I had upper right abdominal pain for 1.5 years before being diagnosed with a (quite lagre) BENIGN! ovarian cyst in August '05 ( I just had it surgically removed.) I, of course was worried about everything from gallstones (something you should definitely be tested for, especially if your discomfort comes after eating a fatty or rich meal,) to liver or pancreas cancer, but I found out the following. Generally, your liver would not cause pain if it is compromised (until end stage liver disease) but would cause fatigue and jaundice. Liver tissue does not hurt unless severly damaged. or atrophied/calcified. I would go to your onc or a good physician, and have him do some scans and bloodwork. BUT , please try to remain calm. There can be so many things that cause upper abdomen discomfort. My thoughts aqr ewith you. Debbi

Marie, Although I am not a LC patient, my friend is, and he was diagnosed with NSCLC 111b (inoperable due to mediastinal lymph involvement.) He has the greatest, most positive attitude ever!! and though I know it's been hard for him at times, in my opinion, his fighting spirit has been crucial in getting him this far along the journey. He is 16 months out from diagnosis, and feeling great. He skateboards, hikes, rides his bike (makes me tired just thinking about it) and is such an inspiration to me to stop whining about stuff that doesn't matter in my life and take life by the horns. I hope that you are able to gather some positive energy and start kicking some ***. My good thoughts and prayers are with you.

My friend who has NSCLC, the reason that I am on this board altogether, was approved for Avastin back in July '05. His previous chemos - first, traditional platinum based, and next, Tarceva, did not work. His latest - the "triple threat" Alimta, Gemzar and Avastin has kept evertyhing at bay - in fac, he got to have his first "chemo break". He was so happy! He's feeling great and is very active- hiking, skateboarding, traveling, working and all this with stage 111c NSCLC!!! I am so hopeful about his new treatment. His next scan is mid Nov. I wish you and your husband the best of luck and good health in the future.

I'm keeping my fingers crossed! You have a beautiful family. Best wishes for full remission - you seem like a scrapper that will not take "no" for an answer. You go, girl! Debbi

I'm keeping my fingers crossed! You have a beautiful family. Best wishes for full remission - you seem like a scrapper that will not take "no" for an answer. You go, girl! Debbi

Sick. I think sometimes docs don't think there's a person attached to the case. They can just dispense statistics etc. without thinking of the emotional repercussions on the patient and the family. My father died of liver cancer, but had emphesema as well, and I remember when he got a letter ( of all impersonal things) from his insurance co. stating that he had "terminal" liver cancer. My mom freaked, but my dad wisely said "well., we're all terminal. I'm not going anywhere." He didn't let it stop his fight. Be strong, and contact that doc's superior. He, or she, needs to know that they could be effecting patients' morale etc. by their callous and imprecise way of reviewing charts. So sorry to hear you're going through this pain on top of having an ill parent Debbi

Hi, everyone. This is my first post, although I've been "lurking" on the board for over a year. Here's why. In Aug. '04, a very good friend of mine was diagnosed with NSCLC stage 3b. In his 30's, non-smoker, HUGE shock to all! I knew next to nothing about LC, but he explained that he had adenocarcinoma and could not have surgery. I immediately thought, "Oh no! No Way! There must be some new information out there!" I immediately googled every term he told me and found this site. Thank God! Although I don't post because I want him to have a "clean slate" if and when he wants to use the board as support, I started doing as much research as I could about new, experimental, and promising treatments. This board is so unique, well run, supportive, and valuable! My friend was put on conventional carbo/taxol,(yucky side FX) and then Tarceva. Stable-ish with slight growth, but nothing to write home about. He recently switched Dr's and is now at Cedars Sinai in L.A. O.k. - long story - but it gets better!!! Through some of you great people, I learned of a few people on the board being approved by their insurance for Avastin. I let him know as he was just going to begin a new therapy with Gemzar and Alimta, that MAYBE, he could get his onc to get him approved for Avastin. He immediately contacted his onc, and he is the FIRST LC patient at Cedars to be approved for Avastin by his insurance!!! Even better, he went to Cedars for his final treatment of Alimta/Gemzar/Avastin on Tuesday of this week, and his onc said that he did not need to have the treatment -that he could take a much needed break because he had SHRINKAGE!!! and STABILITY!!!!! His onc was STOKED! My friend was doing backflips, as he has had s rough road. I wanted to post this info because I would never have known about Avastin if it weren't for this board, and I'm SO thankful to you all! I asked him if it was OK to post this info because maybe some of you other folks, maybe at Cedars, even, can push your onc to get Avastin aproved by your insurance. Thank you all again so much, and I will post new developments, or maybe my friend will even post himself. You guys are awesome! [/i]