lisaRN

LOL Lisa

hi becky, i applaud md anderson.... we have been to 5 major cancer centers and not one has requested the info that you so bravely participated in.... i think it is great that they are doing that.... good too that it is voluntary b/c while we would have gladly taken the 2 hrs to fill the form.... i respect that not everyone has the endurance or ability to do so.... i dont know how happy my husband would have been if i volunteered his blood though LOL .... no, seriously i am sure he would have given it too but like you there would have been a 1 stick rule applied.... as for the word "blame", yes you are absolutely right... in my original post i did mention this....but in retrospect, perhaps my point became clearer to myself b/c of the posts here, i realized that to say "blame DID infact distract from the REAL question.... so i went back and edited my original post to try to make my point better and to try to stay focused... thanks for the info about md anderson....wish others would follow suit.... Lisa

Hi Kim.... Welcome!!! Sounds like you have such a wonderful mother..... sounds like she is also lucky to have a daughter who loves and admires her so much.... i wish you and your mom all the best in fighting this disease.... this is a great place to come when you need people to talk with, compare notes, etc.... Many prayers and warm wishes Lisa

dear minpin, i am so sorry to hear about your mom....my prayers are with you in such a difficult time.... i can relate to you when you say "...my mom....my best friend..." my mom is only 55 and I 36.... around the same age as you and your mom.... but in my case it is my husband ( my other best friend) who has the cancer.... the issue of prognosis always seems to lurk around us although we have NEVER invited it..... it crossed my mind in the beginning to ask the docs.... but i was always afraid.... i guess i didnt want any answers.... i figure only God truly knows the "WHEN" question....and for now i will be grateful for ANY time we have.... of course, sometimes when i am researching the disease, new meds, new symptoms, etc... i trip accross some statistics... at first they really bothered me, seeing the #'s i mean.... but although i am sure they are based on scientific data, i remind myself that individually #'s dont fit neatly into our scenario.... as far as the internet goes there is a ton of info out there re: statistics and prognosis if you are ready for that and are actively seeking the info...just be careful to visit legitimate sites for correct info.... the National Cancer Institute site is often helpful to me: http://www.nci.nih.gov/ the statistics for my husband dont look good at all.... but for me personally i am trying to stay positive and focus on the "here and now".... after all we never know.... there could be major break-throughs in lungcancer tommorrow.... i have to hold to my belief in miracles and that "it's not over 'till it's over" Regarding your question of online support groups, i am only using this one right now.... this is really a good forum for support.... i dont know of any others off hand but you might find some if you go to the: American Cancer Society: http://www.cancer.org/docroot/home/index.asp American Lung Associtation: http://www.lungusa.org/site/pp.asp?c=dvLUK9O0E&b=22542 or ALCASE websites: http://alcase.org/ I hope this helps.... please feel free to pm me if you just need to vent or something.... i can even send you my email address... I am sure others will post here soon and will probably be able to offer you more resources as well.... Many prayers and warm wishes... Lisa

Kris, Extremely loud applause coming from Connecticut ...... may your efforts be rewarded....Please keep us updated as to the interview.... and perhaps you could post a link to an article or something, that would be great.... Good luck!!!!! Lisa

Dear Charlotte, I am extremely saddened to hear of the turn of events.... my prayers are with you and your family.... Lisa

thank you elaine, no nothing you wrote was percieved in anything but a postive way.... i hear you and truly understand where you and everyone else are coming from.... your'e right... the emotional upheaval is still prominent in each of my days.... perhaps that is why i feel so passionate about this.... i would NEVER be offended by ANYONEs point of view..... and now that i am here, i doubt there is anything that anyone would ever say that would prevent me from saying what i have to say too... i try to live by the philosophy that "We have to agree to disagree" and although it is important to have as many people as possible on the same page...... it is also vital to the same extent to have these types of discussions b/c no one side is ever completely right.... this is going to be a team effort if we will defeat this cancer on a global scale.... sometimes, as hard as it is to admit when wrong, we need to hear the other point of view.... it gives us clearer perspective.... i for one invite all sides of any issue up for discussion... i think it is so awesome that we have this board to be able to come to the table so to speak on issues that are important to us individually.... THANK YOU to the founders of LCSC! my updates here are not to invalidate anything anyone has written but simply an attempt to make my point clearer than originally stated... Lisa

Hi Elaine, i agree with you the poll is extremely limited (it wouldn't let me add anything else LOL ) .... and looking at it now... i wish i could figure out how to delete that part of my post.... i know the poll part seems silly.... but i truly intended it to be in a light, informal way.... i think that in retrospect i realize that it TOTALLY distracted from what i intended to get accross in the first place.... the questions i am asking here were purely seeking an informal point of view.... i guess there is a part of me that will never be able to walk away from these questions.... and while i dont know what the future holds exactly... i hope to someday address this issue with people who have the power to implement change and possibly help to rid the world of the need to ask such questions.... b/c after all i agree with many of the posters here that perhaps patients and familes dont have the energy to address these questions.... i hope we can make changes from within the medical community itself, regarding funding and research abilities etc... nothing but good intentions..... Lisa

I am especially saddened that so many absolutely missed the point of my post.... if you read back, i clearly stated that i accept that God has a knowledge greater than I as to the WHY question.... i also firmly believe that scientists ARE asking these questions.... thank God for those who DO ask HOW???? ..... if we don't find the various HOW's of ALL types of cancer or ANY DISEASE for that matter we will never be able to perfect the meds we have or find cures for these diseases that: "OF COURSE, NOBODY DESREVES" What disturbs me the most about the "bad luck" comment is that it seems as the the possible casues are being set aside by the medical community in general of which i too am a part ... i went to each doc prepared to answer a million questions re: possible exposures.... in reality the only question ever asked is "Did you smoke" In asking these questions in does not automatically place blame, the intention instead is to trigger some solutions... I am a home care nurse and Medicare requires us to answer questions on a 28 page form when admitting a new patient to our care... you should see this form.... it is crazy, it asks all kinds of questions from what illness is the REASON for admission to how many steps are at the patients front door? ..... this info is data entried by our agency and uploaded to medicare's data base.... although most home care nurses are driven crazy by the AMOUNT of the paper work..... the rationale for the need to keep track of the specific info it asks is CLEARLY UNDERSTOOD.... also it gives Medicare and JHACHO ( a regulating agency) the ability to see what our statistics are.... how many diabetic patients, how many cancer pts, how many hip fractures, etc... it also helps to answer questions about the performance of our agency.... did we make our pts better, worse or without change.... such as did that pt with the hip fracture fall and break that hip while in our care with her home health aid present.... these types of questions, although they might be annoying and time consuming are relevent and vital to set the standards and expectations of care when a nurse or an aid is coming into YOUR home to care for YOUR loved one..... i wish that the docs in the major cancer research centers utilized a similar type of data base ( maybe not as long but with all vital questions answered ) with ALL patients not just those enrolled in studies..... yes this takes time.... but if nurses are being mandated to do it and are able to make it work.... well........ Now, i agree with every single one of you who has replied that this disease has a horrible stigma attached to it re: "being a smoker's disease" and that in and of itself ANGERs me because as we can all see, that is DEFINATELY NOT ALWAYS THE CASE....more and more people are being dx without a definitive cause..... that scares me .... I don't understand so many comments referring to the "blame game"... First of all, dont we see that if some scientist didn't answer these questions to diseases like measles, mumps, rubella, small pox, polio, etc... then today our children might still be adversely affected by those horrible, AVOIDABLE diseases.... If we don't answer these questions today, what is our hope for tommorrow? how do we know that cancers are curable or not.... look how far we have come with treatments for many kinds of cancer.... breast cancer used to be significantly fatal, but today with prevention and treatment programs we can cure or at least turn it into a "chronic disease".... those patients dont have to simply accept a "death sentence"... and even with that said, i am sure we still have a long way to go so that someday hopefully ALL of these cancers will be virtually unheard of..... AND YES, I believe there is a catalyst for EVERYTHING , and i would ABSOLUTELY look to find a cause if this were breast, pancreatic, colon, whatever.... i am sorry if anyone misunderstood why i did not mention other types of cancer previously, but this is the LCSC and i am only one person and i felt the need to stick to what i know.... Perhaps to not seek a cause is to not determine a solution..... If you reread my post and sincerely think about what i am saying, you will hopefully see that by asking these questions i think that hopefully we can remove stigmas.... these stigmas, after all are probably part in partial what is determining funding for research and development of better drugs for lung cancer in particularly.... Finally, I just keep thinking if we had not asked what was causing my husband to cough up the blood in the first place.... we would never have known, until it was too late, that he had this disease.... Thank God we finally found a doctor who DID ask these questions, perform the appropriate tests.... and ultimately perform the bronch to remove the tumor from his airway.... if not for being able to ask those questions, we might have lost him in April.....and I thank GOD for every single additional second GOD has given us..... Again, i apolgize if i have offended anyone or if this issue is inappropriate for this board.... clearly everyone is passionate about their own approach to cancer... Please understand though, that ASKING QUESTIONS re: HOW or WHAT CAUSED THIS? absolutely IN NO WAY puts blame on ANY patient... to do that would never be fair or even be helpful in any way.... Warm wishes and sincere prayers for all.... Lisa

Dear Donaf, I am so, so sorry to hear this.... My prayers are with you in this difficult time... Lisa

Thanks Joe, WOW What a story.... that is exactly what I needed to hear right now.... Lisa

Hello, i hope i am not offending anyone by initaiting this poll. if i do, i appologize in advance. i don't know whether it is the nurse or the student or the desperate wife part of me that keeps looking for a possible reason or cause of this disease. although we had a very good experience with the many docs we have sought out 2nd opinions....something they said has bothered my son and me since our 2 visits there.... my son is usually active in the question asking dept and asked the docs, how could this happen? ( my husbands type of cancer <> ) anyway, the docs answered him by saying " it is probably just bad luck " not only did my son feel angry that from his perspective they dismissed his need to know but it prevented both of us from understanding the nature of this cancer and thier approach to finding a cure if they do not probe us for a cause.... maybe not everyone thinks about this....but i just cant understand it.... my family faithfully prays and believes in God and i believe that everything happens for a reason... i trust in God that HE knows WHY this happened ....... but what is gnawing at me is the question HOW???? even if this is from smoking or second hand smoke what do these patients have in common that triggers the onset of this disease? and what do the smokers and second hand smokers who remain healthy their entire lives have in common that help them to avoid it? from our onc and all the docs we have sought other opinions from as well as from my own research... i have come up with some possible environmental exposures for us.... i believe they will never find a cure that will treat all unless they can pinpoint causes....i realize that scientists are looking at genetic makeup and why some pepeople are more susceptible as well, but i still wonder about the environmental factors..... i am curious to know what types of things that the cancer patients on this board have in common. As for us, we are suspicious about a few possible causes.... they are the following: 1) the 2 auto body places under our apt window...we've smelled paint and breathed their dust for 6 years...throughout the years i have had a lot more headaches and was dizzy a few times....my son has been seeing a pulmonolgist for a chronic cough for the last 3 years....an i developed a cough/scratchiness a month ago that i cant shake ( i know i am getting a bit paranoid here, it happens occasionally, please excuse me) 2) second hand smoke (my husbands dad smoked when he was young) 3) Radon exposure???? not sure....but we did live in a basement apt for about 3 years when we were first married 17 years ago 4) I-95 is about 200 yards from our apt window also 5) 9/11- when 9/11 occurred, my husband was commuting to new york, everyone at the time thought about all the smoke, dust and debris they were breathing in the city and that fire burned for a very long time.... 6) industrial cooking.... one md asked if he had ever cooked in a restaurant ...and yes he had.... again when we were first married... he cooked using fry-o-lators, charcoal grills etc... all known carcinogens... i guess i could go on and on.... anyway i am, of course, asking this question INFORMALLY i am just curious to see what everyone else has come up with... if i didnt include what you want to say in the poll, please elaborate in a reply..... many thanks and prayers to all.... Lisa [list=]

as i scrolled down through all the posts i realized that everyone else had already said what i wanted to say....very hard to be original here.... but i agree, WELCOME! and THANK YOU for taking your time to be here!!!!!! Lisa

ahmed was the 24/7 internet guy before he got sick.....i have always done my research on the net careful to use legitimate sites for info.... since his dx, i am the one who does ALL the research, i have encourage him to read stuff for himself but he leaves it all to me.... unfortunately i have seen my brave, strong husband go from being outspoken and proactive to quiet, somewhat withdrawn even when we go to the doctor's office....he defers all questions and comments to me....this sort of wears me out, sometimes i wish he would share some of this responsibilty with me.... can be very frustrating.... Lisa

i am sorry to hear this paddy, my prayers are with you... Lisa

i am so sorry to hear this sad news.... my prayers are with you in this difficult time.... Lisa

My husband started Iressa 3 weeks ago tommorrow.... his onc told us that he will see us on monday 9/20 to evaluate whether or not it is working..... he gave Taxotere 6 weeks and did a repeat CT to find progression of disease..... thats when he changed him to Iressa... the thing that puzzles me is that in Florida, when we went to Mayo Clinic, the docs there said they would give Iressa about 5 months to work...they said it takes time.... i cannot find any info on Iressa's website and since the oncologists are more like artists than scientists in the sense that they each have their own goals and methods of obtaining them, it makes it extremely difficult to sort through the differrences like this.... whose right? whose wrong? i know it is really anybody's guess with these drugs and it is different for everyone.... my question is, does anyone have any experiences with how long it takes Ireesa to kick in and show whether it is controlling the disease or not? thanks in advance for any helpful words.... Lisa

my heart is braking for you.... i am so sorry, donaf.... my prayers are with you and your family.... Lisa

Hi Bill, I am as surprised as you to see how many people have been fortunate enough to avoid this symptom.... as for my husband, coughing up blood was what ultimately led us into the ER.... after his right lung collapsed and his initial diagnosis he had a bronchoscopy with a laser ablation of a mass inside his right main bronchus.... within about 3 days after the bronch the coughing up of blood ceased..... all through radiation to the chest, he was pretty much without this complaint .... however, a few weeks after radiation finished it returned.... and with a vengence...now he not only coughs up blood, but dark reddish black and green mucous.... ( sorry if this is offensive to anyone...but i guess there isnt anything about lung cancer that isnt offensive).... much of the time he coughs up mucous so thick and "meaty" that if i didnt know better i would think that it was pieces of his tumor he was bringing up... all sputum cultures are always negative but the productive coughing wont let up....recently it even began to have an odor....covering med onc Rx'd Levoquin x 10 days but with no relief.... and this sputum cx was also negative.... i feel for you and your wife, i am watching my husband go through this each and everyday, i just keep praying for God to give him a break from it.... it has made it difficult for him to go anywhere, b/c he gets embarrassed, ..... and it just absoultely exhausts him....everytime he has complained to the onc about it, the doc gives us the impression that there is nothing, short of another bronchoscopy, that will help it.... he has asked us to hold off on another bronch for now b/c he is afraid that the bronch could cause other problems and prevent him from tolerating any more chemo.... i hope this helps and i wish you and your all wife the best Lisa

Hi Beth, My husband has not tolerated any of the chemo or radiation treatments well and it has been so difficult each time the docs suggest a new tx... he will ask me " what do you think?" and i tell him what i think i would do if it were me or what i think he should consider given his particular situation... regarding what you said about others not getting the extra doses of chemo, i am not sure about why that is for everyone but for Ahmed, it was two fold, #1- the first two doses didn't work and # 2 he tolerated poorly... I have seen him going through what you are describing re: the pain and fatigue.... While you have to take into consideration how you feel and listen to what your body is telling you, you also have to take into consideration the question of why the docs want to give you more of the same....is it b/c you initial doses worked and they just want to back that up for "good measure"? when we were at Dana Farber questioning why the medical onc we had initially was stopping chemo.... Dana Farber told us that they would NEVER stop after 2 doses....that they would always back up a successful round of chemo w/ at least 2 additional doses... that said, you do have to go back to how you tolerated it.... for my husband, i am constantly telling him to hang in there.... maybe for selfish reasons... i remind him that he has a lot to fight for especially our 14 yo and me....like i said that is selfish thinking, and it is very easy to think like that when you are not the one taking the chemo.. you have to remember that these choices are YOURS ALONE.... you WILL make the BEST decision for YOU.... prayers and good thoughts..... Lisa

My 14yo son , who began his first semester of college last week, took English 101 in a college summer course.... he had to write many essays. Two that will stand out in my mind forever are his essays on What is a Hero? and another on the NRA. At 14 (he just turned 14 on 6/26) he spoke of heroes as being those who fight against diseases such as Cancer. He went into great detail of genetics and immunology and how those who give the most seem to benefit the least but they don't even notice it because they are so focused on their mission. When he had to write an essay about the NRA (National Rifle Association) he took a postion that surprised me. He said that although criminals with guns are a threat to society, far too much money and attention is spent on this cause. He said the thing we should be afraid of in this country is CANCER! While approximately 11,000 people die each year from gun shots, Lung Cancer alone kills more than 190,000 per year. He made me think of all the things I have been afraid of all my life.... -->afraid of flying because the plane might crash -->afraid of driving in the rain or snow becuase the car might crash -->afraid of gangs with guns -->afraid of carjackings, hijackings and terrorism -->afraid of burlars, muggers, rapists and murderers I NEVER thought of CANCER.... I am a nurse and I NEVER though of CANCER until it hit.... and although I am not the one with the cancer, I may as well have been.... this disease hits you and your family worse than any gun shot or plane crash.... It took my 14 year old son to make me ask "What am I afraid of?" "What are we afraid of?" The answer..... I am afraid of CANCER! Don't get me wrong, this realization is not to bring me or anyone else down, in fact it has done the opposite for me.... It has made me focus....rather than wasting my time being afraid of everything, I can focus on doing something about this..... letting everyone know that CANCER is out there... it is lurking.... and somehow, someway it WILL affect your life or someone you know.... We have to try to stop it now.... We have to try. 14 y/o's are so wise..... We have to try.

Excellent points, Cheryl. I completely understand what you are saying about keeping your profession quiet. When we were at Yale, Ahmed kept telling everyone "please talk to my wife, she's a nurse". At first I thought it might help to get things done, you know, maybe someone would show a little "professional courtesy". Not only did we not receive much professional courtesy but in fact the opposite happened. Many of the docs and nurses blew us off when it came to explaining the diagnosis, patient education, etc... Everyone kept saying " well, your wife is a nurse, she understands" I had to keep shaking my head and begging for information from docs who had one hand on the doorknob. I realized that we should probably try to keep it quiet for a couple of reasons. First of all, I am a new nurse. I graduated from an RN program in MAY 2003. Secondly, I was not a cancer nurse and new little of the specialty until this Dx. (I am a home care nurse but haven't worked since Dx in April). When we changed docs and hospitals, I told Ahmed to try to play the nurse thing down a little. At our first consult with Dr. Coscia, he already knew I was an RN from our family doc but I thoroughly explained my experiences and my need for details and to be treated like any patient without a medical background. Thank God, he totally understood. Afterall, nurses like doctors do not know EVERTHING and in fact look at all the specialties we have. There is a reason medical professionals choose specialties, so they can be great at one and not be labeled as Jack of all trades, master of none. On another note, I completely agree about the activism thing. I am told that nurses in general are notorius for not being activist.... I for one do not intend to follow that stereotype. When my husband was first Dx'd, I thought to myself, "someday I will speak out against this ugly disease but right now I have to focus on us". I guess I am finally at a point where I realize that you cant wait for someday... somehow I will find the energy and time to do both, NOW. We don't have time to say someday with lung cancer. This disease doesn't afford it's victims the luxury of TIME! I have read some of the threads on activism and see some great ideas pertaining to the media, walks, etc... Now don't laugh but can't we sue congress or the US government or something to get more money into research.... what about organizing marches on Washington or speakers, etc...... class action law suits usually get attention.... so do major protests.... I am thoroughly disgusted when I read things that give me the impression that somehow lung cancer gets ignored because people might think that "it was the patient's fault for smoking". First of all, even if only smokers got this disease, why the wouldn't you blame everyone who gets heart disease for eating to many cheeseburgers ( I wont go on and on, I am sure you get the point) Secondly, people in this country need to WAKE UP! THIS IS NOT A SMOKER'S DISEASE!!!!! What on earth is going on with the volume of patients getting lung cancer who had "no obvious exposure or family history". There is so much we need to look at here. I agree with the other replies also Cheryl. Although I am new here and am not at all familiar with your husbands posts or positions. But I am sure of one thing, WE ALL NEED TO AGREE TO DISSAGREE sometimes and bear in mind that the most important thing here is banding together to FIGHT THIS DISEASE! We need people like your husband who have the dedication and desire to fight regardless of the method or style of his approach.. Again, I have no idea of his style but in my experiences sometimes the 'odd one out' gets the most attention... in this case, is that a BAD thing???? Okay sorry for the rant, my fingers are tired now, so I'll be back later..... Keep up your spirits everyone... it's not over 'till it's over, and even then... Lisa

Thank you everyone for your responses. I was so surprised to see how many people are actively reading this board.... I agree with all of you I am grateful I found this site but wish I never had to. I actually discovered this forum in April, a couple of days after we were diagnosed but after reading a couple of entries regarding the changes in personality etc, that occur with brain mets, I found I couldn't handle it. It was so difficult for me to read about the changes everyone is going through, I was very depressed and shocked. After beating myself up for a couple of days for not seeing this coming , after all "I'm the nurse"...I decided that I needed to focus on the positive and getting to Tx everyday and looking for more options, etc...gave me an avenue for what little energy I had left. I started reading this site again about a month ago and discovered another side to it.... It truly is wonderful how everyone can come together in such horrible circumstances and share information, experiences and even offer support to each other... Everytime we start something new I get my hopes up but for some reason we always end up with bad news....I keep saying we just need one break here. My son has been very active in all aspects of my husbands care, especially knowing the right questions to ask the docs when I forget. He has been an amazing strength to me... we have always been a close knit family.... I know it is so difficult for him now.... My son has been asking me if he can post here as well.... I encouraged him to do so... i was wondering though, are there any other teens posting here? Which is the best thread or forum to post in on a regular basis? Does it matter? Also does anyone have any feedback re: the vaccine trial at Mary Crowley Medical Center/ Baylor University in Dallas.... tommorrow I will call to make the appt for a consult with Dr. Nemunaitis Again thank you all so much, glad to know you're all here.

Hello, I am fairly new here. My husband was dx'd with Non Small Squamous Cell Lung Cancer with mets to lymph nodes in April.... He now has mets to liver and adrenal gland.... just started Iressa. We are praying for a miracle....it's a good thing we believe in them! I am 36 and a registered nurse. My husband is 41, NEVER SMOKED, and an accountant. We have a 14 year old son that we have homeschooled since kidergarten and he just began his first semester of college. The following is our timeline: 3/04 My husband, Ahmed, came down with a cough, doctor said he saw small spots of pneumonia on xray 4/05/04 Ahmed was not getting better, took him to ER at Yale New Haven hospital, he was amitted w/ collapsed lung and to rule out TB 4/07/04 TB ruled out, doctor concerned with abnormal CT scan, Mass appeared on right main bronchus 4/12/04 Bronchoscopy to biopsy mass in airway samples not sufficient, will need further testing 4/14/04 Esophogoscopy to obtain fine needle biopsies of lynph nodes, results = all were positive for Non Small Squamous Cell Lung Cancer w/ mets to lynph nodes on right side of chest and in the AP window (left side) 4/15/04 Surgeon refuses to remove right lung due to AP window lynph node involvement 4/15/04 Bronchoscopy with laser ablation of mass in right airway, lung subsequently reinflated 4/16/04 doctors say they want to be aggressive w/ treatment b/c Ahmed has always been very healthy, never smoked and is only 41 y/o 4/16/04 Brain MRI showed no mets 4/19/04 PET scan, docs say "nothing that we dont allready know about" -- no mets outside of right chest 4/21/04 Began six weeks of RT 1st dose of chemo (expect chemo to be 6 months) Chemo = Mitomycin, carboplatin, navelbine 4/25/04 Rehospitalized with fevers up to 103.5 5/09/04 still no known cause of fevers, docs assume they are tumor related and D/C him with Rx for Alleve 2x per day....oh and they pulled his porta cath "just in case" Porta Cath was clean and free of infection. Portacath replaced 1 week later. 5/18/04 chemo Tx #2...Mitomycin, Navelbine and Carboplatin 6/8/04 last radiation TX...appt with RT doc and Oncologist.... chemo Tx #3 scheduled for next week (6/15/04) 6/12/04 got call from chemo nurse...."congratulations, your dad is done with chemo" ALL DONE???!!!??? he hardly began!!!! WHAT HAPPENED???? WHY STOP NOW????? Oncologist said she re-read the article citing the protocol and it said stop after 2 Tx's 6/13/04 took Ahmed to Fox Chase Cancer Institute in Philadelphia for another opinion.... They said "NO WAY....DO NOT STOP CHEMO..." 6/15/04 took Ahmed to Dana Farber in Boston....they said the same and they called the oncologist at Yale. They called us back and said he could complete chemo at Dana Farber if we didn't mind travel to Boston because when they called Yale the oncologist said "I am not going to give any more chemo just to make them happy." Dan Farber also disagreed with original staging and the involvement of the lymph nodes in the AP window....they said there was no evidence of disease outside of the right chest and that the pathology slides from the esophogoscopy "must have been mislabeled" SCARY.... could he have had the surgery then??? After much research regarding our onc at Yale we discovered she is 78 years old and still PRACTICING !!!! Several docs said that the chemo she gave my dad was a much older regimen (about 15-25 years old) and much more toxic to the patient. 7/13/04 Dana Farber repeated PET and CT scan...showed progression of disease and now has mets to lumbar spine (L2 and L3) 7/15/04 found new oncologist closer to home that wants to be aggressive....gave us 2 choices .... "you can start chemo today or you can start chemo tommorrow." He started the same day with Taxotere 30mg/m2 every week. 8/18/04 Took Ahmed to Mayo Clinic in Florida... they said prognosis is extremely poor...less than one year.... they said Iressa was worth a try and told us of a clinical trial at Baylor University in Dallas for a vaccine for NSCLC 8/25/04 after 6 Tx's with Taxotere, repeat CT scan showed significant progression of disease ... now in left lung with mets to liver and left adrenal gland. 8/26/04 started Iressa...now we are praying for a miracle...we have also called for info regarding the vaccine clinical trial....we are praying he gets accepted.