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john

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Everything posted by john

  1. Good luck with a 2nd opinion. It does seem encouraging that the lung came back as non-cancerous. From what I have read (I am not a Dr nor in the medical field), the TTF-1 is a good indicator. The Drs are treating it like it is stage IV because it is systemic. I don't necessarily know, but the prognosis seems like it might be better than IV. You might also want to check out clinical trials if you Mom is open to that idea Has a pet scan been done to look for Mets in other parts of the body?
  2. http://www.cancer.gov/cancertopics/fact ... ownprimary There is a marker called TTF-1 that is supposed to be accurate in determining if it is lung cancer. There are other markers described in the next link. They are supposed to be 88% accurate Ohio State also has a NCI designated center. James cancer center http://www3.interscience.wiley.com/cgi- ... 1&SRETRY=0 the armed forces of pathology is supposed to have some of the best pathologist http://www.afip.org/leadership.html This is a reach, but could the tissue samples been mixed up?
  3. UMPC is supposed to have a very good reputation. From the article below it does say LC will rarely go to the lymph nodes in the arm pit. It appears there are long term survivors when this happens so hopefully the surgery goes well. I imagine the Drs may suggest other treatment after the surgery http://www.ncbi.nlm.nih.gov/entrez/quer ... t=Abstract
  4. I think it probably is stage IIIB not Stage IV. There are some instances when stage IV is operable but not many (isolated brain met, single adrenal met). According to what you described it probably is not Stage IV. It is very common to either do neoadjuvant chemo (chemo before surgery) or to do adjuvant chemo (chemo after surgery) for Stage IIIa or IIIb Talk to the Doctors and also a 2nd opinion never hurts Take care
  5. I would go to Mass General and find out if HKI-272 is an option or not. It is in clinical trials and not always easy to meet the protocol Don't know if it is the right thing but can't hurt to find out
  6. Your body has a bunch of "good" bacteria that is necessary for the digestive system to function. That is all acidphodilis is. It is found in any yogurt with live cultures
  7. Selenium is in some clinical trials now for prevention of lung cancer. There is also research being done on Retinoids
  8. There is MEGACE. It is a prescription to boost appetite. Some people try the whey protein shakes that body builders use. In addition to the calories, the whey is theorized to help the radiation work better.
  9. Yes the pleural metastasis makes it M1, though from what I have read there are questions whether it should be a lower stage in some articles. Sometimes resections are done even when there is a chest wall invasion by the tumor. I would ask why you are not a candidate for surgery? Is it the lymph nodes? Nx seems strange to me since they opened you up. I guess once they saw the tumor, it was staged IV and there was no need to check the lymph nodes. Is it the malignant effusion? I believe multiple tumors in one lobe can be resected, though I am sure there are always exceptions The best bet is to make sure you are not a candidate for surgery before the chemo. Or is the chemo planned as neo-adjuvant and resection planned later? Ask some questions and get 2nd opinions if necessary. I think even if someone is going to Sloan-Kettering 2nd opinions are good. But overall, a PET is not necessary if there are multiple nodules in different lobes or plural effusion because it makes it M1 which is Stage IV and that means systemic treatment not local treatment I'm not a Dr not in the medical profression so don't rely on this info. Talk to your Drs. Hope you nickname does become NED
  10. PETs are pretty good for non-invasive staging. They are only about 85% accurate and can miss malignant lymph nodes Since you had the surgery to look for the cancer, there must have been cancer in different lobes to make you M1 or Stage VI. Staging is based on the TNM system. (Google "TMN staging") T = size N = lymph nodes M = metastasis Since I imagine the surgery was only around the lungs the only way you can be stage VI is if multiple lobes are involved or you have a malignant pleural effusion. So a PET is not necessary if you are have multiple lobes involved because that classifies you as Stage VI. One thing to find out for sure is that your are stage IV. Then the pet would not matter really except it would give the Drs more info about any other metastasis (if any exist). The treatment would not change and still be systemic. Another thing to ask is do you have pulmonary metastasis or multiple primary lung cancers (MPLC). They are different If you have multiple primaries then surgery might be possible (I think) I am sure there are a few PET scanners in Hawaii and there likely is a combined CT/PET scanner there.
  11. you can search google for "mplc synchronous metachronous" if you want more info I read the multiple primary lung cancers occur about .5% (1/200) Not extremely rare If there is no lymph nodes involved I think they can do surgery on multiple primaries if lung capacity is available and the nodules arent spread too much Low grade (slow growing) is a good word from the path. Though they usually do not respond to chemo too well. If it is BAC also then that is usually lower grade and as Gail pointed out it is often multi-follicular If it BAC then tarceva might be an option, though he had problems with Iressa. The Drs will know what to do You can ask if the new cancer is an atypical carcinoid. I am not sure if the "atypical" word means atypical carcinoid or not. There is a new drug that someone posted on here for carcinoids http://www.pharmalive.com/News/index.cf ... egoryid=15
  12. I have never heard of Tarceva being used on Squamous cell. I am not sure how well it would work. Erbitux is like tarveva. It targets EGFR but from the outside of the cell, not the inside. Actually there is new news out. June 6, 2006 http://www.nyba.org/news/member_news/jun062006_2.shtml Avastin (bevacizumab) is not recommended for squamous cell because of bleeding problems *maybe* photodynamic therapy is an option? http://jjco.oxfordjournals.org/cgi/content/full/29/1/45
  13. The laryngeal nerve or the phrenic nerve often gets compressed. These nerves run through the chest so it is caused by local growth, not distant metastasis
  14. I am not sure if this is an option or something that might work, but what about accupunture?
  15. One reason not to give another dose of chemo is that it may delay entry to a clinical trial. Usually there are protocols in clinic trials that have a certain number of days of no treatment before the clinical trial. This is to ensure that the trial drug was a the result of the response and not previous treatment From what I had read squamous cell usually has a better prognosis than some of the other lung cancer types
  16. Sorry you have to be here. In case you didn't know, clinical trials are one way to get very good treatment. It is not for everyone but something to look into. Also since you are a non-smoker there is a drug called Tarceva that is supposed to work best for non-smoking women. The only problem with Tarceva is that the cancer mutates and becomes resistent to the drug. There are newer drugs like HKI-272 that are supposed to work after Tarceva stops
  17. icbn, You made a lot of good points. Fortunately there is a big push for more transparency with data from clinical trials. I heard there is a push for results of the earlier phases to be more available. Of course, the drug comapanies are fighting this though There are alot of things on pubmed and other sites that do show some of the results. Also if you look at the science behind the drug. Are there signal pathways that have actually been identified or genes or proteins that have been figured out or is just this drug works on this cancer so lets try it on this cancer? My mom was offered a vaccine based on CEA and participated in the trial. I was a little concerned that as far as I know there was no testing to see if my mom had an elevated CEA or the cancer was checked for the antibody. I personally thought she should try another trial if there was not a check for CEA, but I think she may have been overwhelmed by everything.
  18. john

    Darn

    Maybe there is a way to find trials on irreversible EFGR inhibitors like HKI-272 This drug is supposed to work after Tarceva stops working. http://www.clinicaltrials.gov/ct/show/N ... 77?order=1 It looks like there is a trial of sns-595 at Duke that looks interesting. One reason chemo fails sometimes is because of a mutation in the P53 gene. It appears that sns-595 does not work through the p53 gene so it the cancer is less likely to be chemo-resistant to this drug. It is supposed to be pretty easy on the body. Good luck
  19. I wouldn't say anything unless it comes up on a form. As you said there is no reason to give any information out especially if it can hurt your career. I wouldn't tell any recruiter either. There are too many companies that unfortunately might use the previous condition against you and there is no reason to share it without explicitly being asked on an insurance form. It has happened to people on this board. It even happened to Lance Armstrong in a way. Once his French team Cofidis discovered his condition, they fired him and cut off his medical insurance. A little different situation than yours but it just shows a company will try to protect its bottom line (even if there really isnt a problem) Just my opinion Good luck.
  20. john

    WBC counts?

    Kelly, Debbie is right it is called Neulasta
  21. Teresa, Is it true though that hospitals that are NCI designated have to support clinical trials? My mom went to a hospital that was seeking NCI designated status and she had no problem as far as not getting into trials or being offered trials. Though she may have initiated the trial search. I am not sure. Or was it because the main Dr was a surgeon and not a medical oncologist? Just wondering. John
  22. Very good article and point. Unless the Doctors inform patients of clinical trials and patients ask about them and sign up for them there can not be any progress as far as drug development
  23. Often with non-smokers, the cancer they get is called BAC - bronchioloalveolar carcinoma It will sometimes present itself as a large number of tumors in the lung. Tarceva often works well for this type of cancer and in people are non-smokers, so I hope Tarceva helps. If there are multiple tumors sometimes that indicates the lung as a secondary cancer not primary. There is cancer of unknown origin also. I do not know, I am not a Dr, but this might give you a few questions to ask the Dr I am not sure how many cancer centers there are in Idaho. You might want to give the Ohio State University call before you leave to get a 2nd opinion It is called the James Cancer Center. As I said before though, the Tarceva often works well with non-smokers. There is also a drug called HKI-272 that is in clinical trials If the multiple tumors are in different lobes then it is M1 which means Stage VI. If the multiple tumors are in the same lobe it is T4, which means stage IIIB http://www.ncbi.nlm.nih.gov/entrez/quer ... t=Abstract There are certain exceptions to the don't do surgery for Stage VI. Certain solitary brain mets and unilateral adrenal mets. Yes surgery is usually the best option if it is possible. If there are two many tumors throughout the lungs then it is probably not possible.
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