Maria

I don't mean to sound unsupportive of a letter-writing campaign - because I am all for it. However, after reading the sample letter, it is not clear to me what you are asking for from those that you want to send the letters to? financial support? awareness? etc? I would recommend being more direct with what the group's goal is and why you are contacting them. Just a suggestion/crtique -take it, or leave it.

Anne, I am so sorry to hear about your mom and all that you are going through. Your post echoed so much everything that my family and I went through with my dad's passing. Everything happened so quickly and it is as if you are on auto-pilot because you just can't believe or deal with what is actually happening. You have never experienced this before - nor had I - but you must have faith that you are doing the right thing. Do not second guess your decision to keep her at home and without a feeding tube - you would only be prolonging her pain. (nor should you worry about ensure and gleevec, etc.) I took a lot of comfort that my dad was at home and surrounded by all of us. I know an earlier post encouraged you to let your extended family know what is going on. You and your father are the best judges of that but if you think that your mother would want to see them, let them know and have them make the decision. You don't ever want to let this time go without saying all the things that you want to say. As difficult as it was seeing my beloved dad the way he was the last 3 days of his life, I consider myself so fortunate to have been with this incredible person when he needed me (and my family) most. that is a gift - a lot of people lose their loved ones in accidents or suddenly and aren't able to be there to hold their hands. I am blessed, as are you, to be there. Continue to hold your mom's hand and tell her all the things you want to say - she can hear you. It is so clear from all of your posts what a wonderful mom she is and how devoted a daughter you are. You, your mom and entire family are in my prayers.

Anne, I was happy to read your post that you mom can take Gleevac (the gene that they have detected in her is likely the c-kit gene). I did a lot of research (what is out there) on Gleevac and was so hopeful and excited about it for my dad. Unfortunately, he did not have the c-kit gene present in his SCLC so Gleevac ended up not being an option. It has been amazing with CML and gasto-intestinal cancers so hopefully it will show some success with SCLC (especially because there is just nothing out there to treat recurrent SCLC effectively). I lost my remarkable father in April -- You, your mom and family will be in my thoughts and prayers. I hope that Gleevac will prove to be a blessing to you all! Please keep posting with updates. take care, Maria p.s. I posted last Spring (probably in Feb and March) with links to articles re: Gleevac -- you might want to do a search to see if they are still on the message board.

Angie, I came upon your post and could competely relate to exactly what you are feeling. I spent most of last year spending time with my wonderful dad as he bravely fought his battle with SCLC. On special days like anniversarys, birthdays and holidays or even just any ordinary day that I spent with him - those awful thoughts of "is this the last day like this?" would overwhelm me. I am sad to say that there is no way of getting around that except to remind yourself what you already are telling yourself -- that there are no guarantees for any of us that we will be here tomorrow -- young or old, healthy or sick. That can be pretty darn depressing to think about but at the same time I do try to take some comfort out of it and pray that there is a rhyme and reason for things that happen that really seem to have no reason. The picture of you and your parents is great - they look like a very happy couple! There is no reason why your dad and your family should be going through this -- just as there was no reason my family did either. But, it has happened and (as it sounds like you are doing) spend all the time you can with him and cherish every moment. One of the worst parts of cancer is that it is a constant reminder of our's or our loved one's mortality -- making those special moments somewhat anxiety filled when we think that this might be the last. But, if there is a glimmer of anything good in cancer is that you don't take a damn thing for granted anymore. I don't write this to upset you, but my father passed away this past April. I don't think I will ever truly get over the loss that I feel -- I was blessed to have such an extraordinary person my life, let alone have him as my father. My dad passed away 6 days after my sister delivered twin girls (and they were 6 weeks premature). My dad was thrilled and got to see them. It seemed as if he was waiting for their arrival. One of the hospice nurses said something to me that has stayed with me (and might help you) -- we always seem to think that everything should go by our schedule, the way we think things should happen, but that sometimes nature has other ideas - that there is a time to be born and a time to die. Just as we expected my neices 6 weeks later, there was another plan. Just as I would have given anything to have my dad here for another 20 years - there was another plan. Angie, sorry that I have rambled. Take care of yourself, let yourself grieve this difficult time, spend all the time with your dad and other loved ones you can, and finally -- don't give up hope! You dad's time may not be for a very long time. I will keep you all in my prayers.

Christina, I am so sorry about your husband -- he was too young! I can't imagine the shock you must be in especially in light of how quickly his passing came after his diagnosis. I lost my amazing dad (age 68 .. and also too young!) in April and he had been diagnosed 10 months before. I have a hard time with how quickly it all happened, so I can only imagine your feelings are multiplied. I wanted to reply to your message because I hadn't heard about "run for lungs" -- but I am doing the same kind of thing ...check out my post for Team Lungevity. I would like to watch this thing grow and make it a national thing (either through Lungevity Foundation or some other avenue). I will check out ALCASE. It is a way for me to focus my energies to a cause that has become so important to me. When you feel up to it, let me know what you think. take care of yourself, and again, I am so sorry for the loss of your husband.

I am posting this to let you all know about Team LUNGevity and the LUNGevity foundation. I am going to post here and a few other spots on the site to make sure that the word gets out...any help, support, or advice you can lend will be greatly appreciated. My apologies if you have read the same post more than once! First off, as some of you may know I visited and sometimes posted on this site during the 10 months of my father's brave against SCLC. As you can all relate, my family and I were devastated by this insidious disease and our lives will never be the same. After my father's diagnosis, I was shocked to learn just how many people are afflicted by lung cancer and the inadequate amount of funding that goes to researching new treatments and raising awareness. I have my theories on this (stigma of smoking as the main one) but I won't get into that here...what I will tell you about is my determination an effort to make a difference and change the reality of lung cancer today. I am working with the LUNGevity Foundation (some of you may know of this organization) to help raise funds for research. The Lungevity Foundation is the only organization in the U.S. that is dedicated solely to raising funds for lung cancer research. My first undertaking has been to organize a team of marathon runners (myself included) to run the Chicago marathon this Oct. 12th to raise money and awareness for lung cancer research. I modeled this project after many other non-for-profits that ask people to raise money while at the same time reaching a personal goal (i.e., running a marathon, long distance biking, etc.) The Lukemia Society has been very successful with their "team in training" programs and as have numerous breast cancer foundations -- i.e., the Y me races and Avon 3-day walks. I wanted to do the same for lung cancer -- especially because I think that such events not only help raise money and awareness but also can play a secondary purpose of dispelling the view/myth that people with lung cancer live unhealthy lifestyles. The basic idea is to get as many runners as possible and have their family and friends donate money to Lungevity Foundation to support them and their commitment to raise funds for the organization while achieving a major goal - like completing a marathon. This is our first year doing this -- so we need all the help we can get. And, at this point I should say, that I by no means expect anyone to take any focus away from what is really important in their lives -- their own battle against this disease or caring for someone who is. Believe me, I know that that is the most important thing. I am putting this out there to get as much exposure for our endeavor and to see if anyone would be interested in helping out -- nothing more. HOW TO HELP: 1.) If you know of anyone who is running the Chicago Marathon who would be interested in joining our team ask them to visit www.lungevity.org/events.htm to learn more ...or you can give them my email address -- mariahmoran@hotmail.com and/or 2.) are you in the chicagoland area? if so, would you want to come out and cheer on our runners the day of the marathon ... we'll give you a t-shirt to help bring more exposure to the cause! and/or 3.) make a donation in support of a runner or to the Team in general. You can learn more about TEAM LUNGevity by logging onto www.lungevity.org/events.htm I believe that we can make a difference and hopefully this effort will only grow! thank you so much for reading this long post. And, again, I do not post thinking that this effort by any means takes precedent over what you are all going through. take care and God bless, Mariah

Kay, My father suffered from a collapsed lung due to the immense build up of plueral effusion (fluid that is a product of the tumor growth that builds up between the lining (pluera) of the lungs. He had a plueral catheter inserted to drain the fluid. It called for a 3 day hospital stay for him, although some patients can do it on an outpatient basis. He has so much fluid (nearly 6 liters) that they had to draw it out in small/measured increments. Thankfully his lung re-expanded and he was able to have some relief for a while. I hope that this helps.

Anne, My father had the same chemo "cocktail" that your mom is on -- VP16 (etoposide) and Carboplatin. He would be on a week (infusions 3 times that week) and then off two weeks. He did a total of six rounds. He experienced great results -- 75-80% skrinkage of his tumors. He was also part of a clinical trial for his first line of treatment -- in addition to the VP16/carboplatin he received infusions of a genesense. I have not checked the clinical trials for quite a while now, but I believe that it would still be open. My dad was treated at UofChicago. What is involved with genesense is a "pump" that infuses the medication to the patient 24/7 for a week's time. It is delivered through a port-a-cath (what your mom probably has in order to get her chemo delivered) and the patient can go about their daily routines. The medicine is in a medium-size packet and is stored in a "fanny-pack" like bag. My dad would keep under his shirt and no one even noticed it. It isn't a chemo agent so there are little to no side effects and definitely worth looking into. My dad's docs believed it helped him with his first line of therapy. ALSO...(in case you hadn't read my other posts)...ask your mom's oncologist to do a c-kit test on whatever tissue they used to diagnosis and stage your mom to see if Gleevec would be a possibility. One last thing...and this is just a tip ... you sound like me and my sisters in that we had a millon and one questions for my dad's doctors. And, damn straight you should!! You have to be your mom's and your own advocate no matter how great the doctor. So, if you feel rushed or that the doctor isn't able/willing to give you enough face-to-face time in the office to answer your questions -- ask/tell him you will email him your questions to him. that way, you have time to think through your questions without feeling rushed and you will have his/her answers on paper so that you can refer back to them. You have to be a little pushy but it is well worth it!! take care and I hoping for the best for your mom and your family!

Thank you for the information. My father was treated at UofC by Drs. Hoffman and Rudin -although neither of them suggested gleevec as an option. We learned about it through Rush. Unfortunately (as my last post under the Gleevec post stated) my father passed away in April before he could take advantage of any potential benefit from Gleevec.

Just a note following up on Jonathan's post -- Gleevec is not a chemotherapy agent. It does appear to be a promising treatment as it has made a huge difference in leukemia and gastro-intestinal cancer patients. However, you have to ask that you are tested for the c-kit gene -- they should be able to do this test with the cell block that they used to diagnosis and stage you. Fran, I don't know what suburb you are in of Chicago, but if you haven't already sought out the advice/opinion of Dr. Bonomi at Rush Hospital, I strongly advise you to do so. My father was treated at UofC and received excellent care although they missed a huge thing (i.e, his lung was collapsed!) and were not as agressive/forward thinking as we would have liked. We were referrred by so many people to Dr. Bonomi and he is wonderful. He is on top of what the latest information is regarding treatment for SCLC and is willing to try it. He also has a great manner about him and the way he treats the patient. Good luck to you. I am sorry that you have to go through this, it is a hideous disease and I pray that you are one that beats it!

After reading your posts re: Revlon and feeling as frustrated and angry as all of you -- I looked at the website for the run/walk and its list of beneficiaries. They are selected by by the Entertainment Industry Foundation founded by Lily Tartikoff (Brendan Tartikoff's widow -- he was the former head of NBC and died of hodgkins disease as relatively young man). Here is their website (See the end of this post) -- they discuss the need for funding for breast, ovarian, cervical cancers -- but not lung. While I definitely know of the need for research for these cancers -- it is time to focus on lung cancer too. I think that is very important to contact Revlon and have our voices heard -- but I also think that it will be more effective to continue to put the heat on after these races are finished. I suggest that we blanket EIC, the national news and radio stations, and other celebrities as well. It is hard when faced with the astounding numbers and the lack of research to argue that there isn't a great need for lung cancer research (male or female!) Here is the contact at EIC: Merrily Newton Entertainment Industry Foundation 11132 Venture Blvd. Studio City, CA 91604 (877) 876-9672 (give her a call too ) Here is the site: http://www.eifoundation.org/national/nwcra/index.html

Dave, Here is the link to the clinical trial at Mayo re: gleevec. They are not currently recruiting patients, but should be by the end of this month or early next. Also, I believe that there is one Sloan Kettering which is a lot closer to NJ than Rochester, MN http://www.clinicaltrials.gov/ct/gui/sh ... 3E?order=3

There is also a phase II trial being done at Mayo (starting in April) and one being conducted at Sloan Kettering for recurrent extensive small cell lung cancer. My father is currently being tested for the c-kit gene and we are hoping that is present so that we will have Gleevec as an option. I will keep you all posted. Any other information or thoughts that people have -- please share them! thanks!

I posted earlier in the month about Gleevec (in a response to a thread about chemo drugs) and didn't hear anything from anyone. Has anyone else heard anything about GLEEVEC? We learned about it from my dad's onc who said that it is a "maybe" for treatment. In short, it a drug that was developed to "shut off" the c-kit gene in chronic myeloid lukemeia and had great success. Researchers located this same gene in a rare form of gastro-intestinal cancer for which there was no treatment -- and had great success. They have located this same gene in SCLC -- although not every SCLC patient has the c-kit gene present. Currently they think about 35-40% of SCLC has the c-kit gene although that number could be lower. They are now in the process of trying it out on SCLC patients. They haven't yet determined whether my dad's SCLC has the gene present. In the meantime, I am doing research and seeing if anyone else has discussed this with their doctors. There are currently 2 clinical trials going on for first-line SCLC patients (Sloane Kettering is one location) and there is supposed to be one starting in conjunction with Mayo clinic for treating patients with recurrent SCLC. Do a search on clinicaltrials.gov or the NCI website -- it is also known as "imatinib mesylate" ALSO, here is an article you should read about it too... http://www.news.harvard.edu/gazette/200 ... eevec.html It could be very promising -- ask your oncologist about this!