JonathanS

Hi Oncodoc, It sounded like in your response to the "limited: is it curable or not?" you were discouraged about having been fired for the folks at Mayo or Sloan and Kettering. You have every right to be discouraged, but please remember- it is not you they are lashing out at- it's the cancer. All they know is they are dying, and for some patients they feel if what they are currently doing is not working, so therefore they must switch and try something else. That something else is often a new oncologist. Many times patients simply begin grabbing at straws and firing oncologists. But please do not get discouraged- you are very intellegent and I think you do the best you can emotionally and medically for your patients. We are human and unfortunatley we have limited control over this beast and over who wil be cured and who will not, you and I know this because we are in the field, but patients sometimes just think..."If I only go here" or "He must not know what he is talking about..." This is one of Kubler Rosses stages called "denial." That is not to say that anyone who switched oncologists is totally wrong, but still, I see the compassion you have for this field and the patients in it, and as a nurse, I feel that you are right for this job. Keep going- don't get burned. Sometimes people go the "Sloan and Kettering" and "MD Anderson" because they are so publicized by the media, and they feel that these places hold the key to survival. Just please don't take it personal.... Your best is all you can do Jonathan

Dr. Joe, Thank you very much for replying so well to my questions and for giving me all those intersting links. It looks like there is some rationale for maybe alterbating cpt-11 and cisplatin with cisplatin and etoposide in the future, seeing as topotecan alternated with it showed a small, but real advantage. I have 1 more question if you don't mind... If someone is resistant to topotecan, is CPT-11 still an option??? Iknow they are in the same family so i thought I'd ask. Thanks again!!! We need you here, and frankly have needed you here for some time...You are one of the most concerned, caring and compassionate oncoogists I have ever spoken to... Sincerely, Jonathan

Hi everyone, For those of you who do not know me, my name is Jonathan and I am into oncology research, and currently in my 4th year of nursing school. My area will be oncology research nursing hopfully here at the University of Chicago Hospitals. Anyway, as I research for better treatments I must wonder a few things about sclc... 1.) What is the best first line therapy? A.) cisplatin/carboplatin with etoposide B.) cisplatin/carboplatin with CPT-11 Studies have shown a benefit in survival and long trem remissions with choice "B" in extensive staged patients, however, shouldn't that also carry over to limited staged automatically?? I mean if regimen "B" is better for late staged disease, wouldn't it automatically be better for early staged patients as well? 2.) Are there any studies looking at combining all three agents in first line therapy (cisplatin/carboplatin with etoposide and CPT-11)?? 3.) Drug resistance is the biggest problem with sclc, so why not alternate drugs before it is necessary. Like this example... cycle 1: give cisplatin with cpt-11 cycle 2: give cisplatin with etoposide cycle 3: give taxol with cisplatin this way the cancer cannot build up an immunity to the drugs as it being hit roughly at the same time with different agents. It will nto know what hit it or what to expect next in other words. Has there ever been a study like this? Is there a rationale here? 4.) Does gemzar play a role in sclc, and if so what role? 5.) After a pt goes into remission, why not resect the area of the lung the tumor began in --either the lobe or the wegde resection to eliminate the source of the disease. I know that surgery has been reseached way back, but not recentley with sclc, and we really do have better drugs and techniques today-so why not explore surgery again -either before or after remission?? Thanks for any answers you can give me....I know these are had questions, and I am honored to have an oncologist such as yourself help me answer them....Thnaks Dr. Joe we need you here!!! Jonathan

Hi everyone, I have been researching options for my uncles' resistant cancer. (He has had carbo/taxol/etoposide and then gemcitabine when that failed). I wanted his onc. to give him CPT-11, but he thought that this trial by Ariad would help him more. I just wanted to put this out there for anyone who may be in the same situation. By the way, he is being treated at the University of Chicago Hospitals' Center for Advanced Medicine by Dr. Ezra Cohen and Dr. Everett Vokes. U.of C was ranked in the top ten cancer hospitals in the nation for those that are close by. Also, another oncologist that I have a lot of respect for is Dr. Charles M. Rudin who used to be at U.of C, but now is heading thoracic onology at Johns Hopkins in Baltimore. (just thought I'd throw that tidbit of info out there). Jonathan (4th yr. oncology nursing student) U. of Chicago

What about being put on your husbands insurance as well just for a back up plan to make you feel better, plus it will help incase you need it. Otherwise, GOD forbid something happens with your job, you will have to cobra it and pay it on your own unfortunaely. People can be so rude, incompassionate and inconsiderate today-just for a few extra dollars. SAD! You are not the one with the problem they are, and i would get in contact with my attorney and ask him how best to document this. Maybe file a grievence??? Praying for you and your recovery!!! Jonathan

The standard treatment protocols for SCLC are as follows.... Usually first line therapy is cisplatin and etoposide or cisplatin and CPT-11. (Note: a cousin of cisplatin can be used it is called carboplatin, but they are the same drug in that if the cancer becomes resistant to one, it will also be resistant to the other.) second, thrid or fourth line therapies can be any of the following.... usually they will try to go with taxol, CPT-11, or topotecan. If these then fail, and the patient is still in a condition to undergo chemotherapy and wishes to they can try gemzar or an older regimen of drugs called CAV. CAV stands for cytoxin, vincristine, and adriamycin. These drugs do work for some patients when all the above have failed. These are the standard oncology protocols that are ethically used all over the United States by oncologists, however, let it also be understood that an oncologist may for whatever reason decide to try a drug off of the protocol list and is authorized to do so, but this practice is largely uncommon and highly discouraged, unless of course it is a clinical trial for that cancer, in this case SCLC. Sincerely, Jonathan R.N. (On my way to being chemo certified)

Have they discussed any of these drugs with you???? etoposide cytoxin adriamycin vincristine Let me know........Jonathan

Havent heard from you in a while and was wondering how you are???????Jonathan

Hi Bess, Just wondering how everything is going and if you spoke with your oncologist about the options and the pill form of vp-16? Let me know... Here's hoping all is well....Jonathan

Hi Jamie, If his surgeon is Dr. Marc Furgeson at Univeristy of Chicago, GET RID OF HIM NOW!!!! My mom had him and he sucks! His bed side manner is dispicable! He was so cold and rude! The rest of the oncologists there were wonderful, and up to date, but the surgical oncologist (Fergeson) was awful to her. I know you were taking dad there, so I just wondered. Try Northwestern and then Rush or vice versa as far as surgery for lung cancer goes. Just my experienced opinion. Good Luck...let me know...Jonathan

Hi Addie, This sounds wonderful! Currently, the two most aggressive ways to treat sclc in a conventional manner are chemo using cpt-11 and cisplatin...some oncologists are using the old cisplain or carbopltin with vp-16, but studies have shown that cpt-11 and cisplatin have better long term remissions and survival/cure rates. ALSO- as far as cure goes or even long term remission, there have been a number of studies world wide that have shown twice daily radiation to be better than the traditional once dailt- so do the research on these two. I go to www.google.com and type in what I am looking for. You can put in "small cell lung cancer twice daily radiation" and see what comes up. talk to your oncologist about this and make sure he's up to date as well. However your case is more rare in that it is limited stage and small in size- so if I were you I would look into surgery removing that lobe. Do what you feel is best and act fast...sclc can grow and spread in days... your gonna be ok...let us know what happens! Jonathan (In school, 1 year away from becoming an oncology nurse).

Hi BessB, I am sorry to hear your dilemma, and your worry/fear. Well, I would say that it all depends on what you want to do. If the cytoxin, vincristine, and adriamycin are working, it may be worth the side effects of the chemo to you. If the drugs are no longer benefiting you there are some other options that I can think of. From reading your signiture (disease history), it seems that the cisplatin and vp-16 gave you no response according to what you have there, so my rationale is -what makes them think you will now? I have researched this disease for three years, and I have yet to see anyone who was resistant to a particular chemo go back on it again with a response (In fact I have yet to find an oncologist that would put a client back on the same drug that did not work before.) However, it seems that what worked best for you was CPT-11 (irrinotecan) and taxol, with the first round of chemo. So you may want to try CPT-11 with a drug you have not had yet like gemzar (gemcitibine) which has shown some activity against SCLC. Or maybe do the CPT-11 and taxol all over again and see what happens -- maybe it will shrink 60% again?? Maybe adding CPT-11 to the etoposide will help to fight the cancer. Sometimes when you combine 2 or more drugs together you get a synnergistic effect that really works well, and SCLC has shown before that when you combine drugs together you get better responses. I know someone who has had almost all the chemo's possible for SCLC, but when they recombined them together in a new way he almost went into remission to their astonishment!!! He is currently on carboplatin taxol and etoposide (vp-16). So that would be another option. You can DO alot of things , and get better. You may want to write some of these ideas down and discuss them with her (your onc.). There are options, and I believe in you and your power to get well. let me know what happens..... I'll be prsying for you. Jonathan

Jenny are you out there? Please check in if you are.... Does anyone remember jenny G. She was a young SCLC patient on here who, the last we heard from her was doing great. She was young, had a teenage son, had long black/brown hair...All the sudeen she was jsut gone, and I have wondered about her ever since....Jonathan

Hi MO Sugar- Yeah, I agree that it is probably a side effect of the chemo, but if I were you, knowing this damn disease, I would demand a haed CT and pronto! Just to be sure. When are you next scans to see if the carboplatin and taxol are working? Jonathan

Does anybody know where Jenny G. is??? Last we heard from her was a long time ago! At that time as I recall the last we heard from her she was doing rather well and in remission. Fopr those of you who may not recall, Jenny G. was the young woman with SCLC. She had shoulder length black hair, and a teenage son. Jenny if you are out there please let us know you are alright. Anyone who has any information on her whereabouts, or on how she is please let us know....I did go to her profile and sent her a email in the email option... that will go to her private email address right?? Lets pray that she is well and has no need for the message baords anymore!!! Thanks everyone, Jonathan

Oh my God you are too damn young, we have got to find a way to get you well!! Under go a review at MD anderson, and saty with them, they are one of the top ten cancer centers in the country...if anyone can save you they can! They have so much there! Ask about a drug called CPT-11 when you go. Let me know what happens...and pray.... Hopeful, Jonathan

Oh my God you are too damn young, we have got to find a way to get you well!! Under go a review at MD anderson, and saty with them, they are one of the top ten cancer centers in the country...if anyone can save you they can! They have so much there! Ask about a drug called CPT-11 when you go. Let me know what happens...and pray.... Hopeful, Jonathan

Hi Norme, So sorry to hear that is id that stinkin lung cancer again. What is their plan of action, more chemotherapy when he feels better I assume. The CPT-11 sounds like a good choice based on what he has been on, you may want to ask about that. You also may want to call the chemo oncologist to decide what he will go on next, so that you guys at least know whatv the plans are and have them set up for when he is feeling better. Let me know whats up.. hopful, Jonathan

Hi, Here is some drugs that I know are used to combat NSCLC.... they are... carboplatin taxol gemzar VP-16 taxotere -not the same as taxol CPT-11 topotecan cytoxin with adriamycin and vincristine iressa (last resort many times)

Hi Jenny, How are you? I am just wondering what is up with you and if you finished PCI??? Let me know.... Jonathan

From my personal research, CPT-11 is a better choice for a relapsed SCLC. Sometimes it can be given with cisplatin and other times they are using it with gemzar (gemcitibine)....I will list all the drugs that are effective against SCLC... cisplatin with either CPT-11 or etoposide (VP-16) CPT-11 alone or with gemzar or cisplatin taxol cytoxin with adriamycin and vincristine topotecan taxotere (rare, but can be used)

Hi Sam, Just posting to see how ou are doing at this point?? How many cycles have you had thus far and ho were /are the scans?? How are you feeling? Have not heard from you in a while, and I a concerned, but I am sure you are just out enjoying yourself for the end of summer.... Jonathan

My mom was given a liquid solution with malox, tylenol III, and a mix of other drugs to numb her throat during radiation, maybe you could ask your oncologist for this as well. Jonathan

Hi Jack, That is great, and I am sure she will heal up just fine!!! Are they going to do chemo after the surgery is all done with?? Jonathan

ask them and tell them to make sure that it is not infected. If it is not, tell them that he is in pain and that they must do something about it period end of story! he should not be in pain no matter what. Also, I have heard that twice daily radiation produces longer termed remissions and better cure rates than once daily, so you may want to inquire about that. Jonathan