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cjvrooman

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  1. I read the original report posted with Dr. Chevalier's comments regarding the clinical trial. The one thing I find most interesting is that most sites posting the results have failed to post the last paragraph. Dr. Chevalier concluded that the study was promising, but because of the toxicity of the chemotheraphy drugs he suggested that a new clinical trial should be done using non-cytoxic drugs. Additionally, further research on this clinical trial suggests that it was funded by Bristol Myers who coincidentally also manufacture the two chemotheraphy drugs that are being recommended for use. I checked the FDA site and found that these drugs were approved for treatment of "advanced" cancer. I'm still not convinced that this is the best course of treatment for someone who is early stage and post operatively cancer free and looking to just treat any "possible" remaining cells that might have been missed. It still seems that the negatives far outweigh the positives. I'm still researching....
  2. My continuous search for a cancer center to provide treatment with low dose chemotherapy only resulted in finding locations out of my insurance network. In absolute frustration, I contacted my insurance carrier and advised them that since they would not approve treatment out of network, they had to find somewhere my husband could go for this treatment. They have been working on this for 3 days now with no success yet. Just had a CT chest scan yesterday and waiting for results.
  3. Thank all of you for your suggestions and words of encourgement. I still haven't given up hope and even called the Cancer Treatment Center of America and if accepted this would require us traveling from Florida to Oklahoma just for 3 days of tests to see what they would recommend. I too read to results presented at the Oncology meeting regarding chemo for Stage I and II and the final paragraph indicates that because of the high toxicity of the drugs perhaps a clinical trial with non-cytoxic drugs should be attempted. All my research has indicated that high dose chemo "may not be helpful" and could do more harm than good post-surgical resection for Stage I and II. The present oncologist suggested a clinical trial with Iressa which I thought was absurd since the website for Iressa clearly notes that this drug was intended for advance inoperable tumors (which is not our case). It also seemed absurd to put my husband in a clinical trial for 2 years and then find out he was only getting a plecebo. This would be a waste of 2 years. It appears that there is no clear resolution or answers since they don't have one yet and suggest these clinical trials because they are "fishing" for answers. I have received some information for other NSCLC Stage II survivors who have provided their present followup treatment course and it seems I am going in the right direction. I just have to find a doctor who will think "outside of the box" without blinders. I want to leave the extreme treatment as a last resort when we have no other options. Right now, he is cancer free and I just went to give him a chance to stay that way without killing him with the treatment. Keep the faith and God Bless all of you.
  4. My husband just had an right upper lobectomy in March 2003 which was diagnosed at Stage IIB, T2,N1,M0. We are on our second oncologist with no one making any definitive suggestion for followup care except for "high dose" chemo and radiation which the surgeon says is too dangerous and too extreme and not required since he is cancer free at this time. I agreed with this conclusion as soon as the treatment was suggested and that oncologist basically told us to find someone else to take care of my husband. The second oncologist is not much better and wants to do basically the same treatment but without the radiation. After I suggested "low dose" chemo (as suggested by the surgeon) and followup with an "AMAS" blood test periodically, he indicated he had no knowledge of either and left it up to us to take all the necessary steps and he would be "happy" to followup based on our results. Obviously there will be no assistance here. I'm running out of options and would gladly like to hear from others who have been in our situation. It appears that I have still not found a Cancer Center interested in treating and not just making money. It appears that as soon as we do not agree with their suggestion, they don't want to know us and suggest we go elsewhere. HELP!!! I'm at my wits end and getting very exhausted fighting with the so called "experts".
  5. After posting questions on the ACS Message Boards, a helpful lady provided me a link to this sight and indicated that perhaps the members of this forum could help. I'm going to definitely bookmark this site. My husband had a right upper lobectomy in March 2003 after 6 months of fighting with physicians to obtain a diagnosis for a mass found on a chest xray (diagnosis confirmed the day after Christmas-some present). He has a hard time dealing with his condition and has left all the research up to me - my life has become a living hell. The surgeon suggested a "low-dose" palliative chemo just as a precautionary treatment since he is presently cancer free, especially after confirming my opinion that a treatment with high dose chemo and radiation was too dangerous and extreme and not required (this was suggested by the first oncologist). The second oncologist again suggested the same basic treatment but without the radiation based on a recently completed clinical study that was presented at the yearly Oncology meeting. I have done extensive research on all the cancer drugs and the two suggested are noted as highly toxic and recommeded for advance cancer patients who cannot have surgery. Not our case. I requested "low dose" chemo and was looked at as if I was speaking a foreign language and informed that he had no idea what I was talking about. Extensive research about the "AMAS" blood test also seemed to be a good source for follow-up and possible early detection in the event of recurrence, but this request too was brushed off because of no knowledge of such a test. I am so exhausted fighting the so called "experts" and dealing with Cancer Centers who appear only interested in dollars and not treatment. We have been left to obtain all the information and obtain the blood test on our own, but the oncologist will be "happy" to followup based on the results that we provide him. I have researched every site I can find on the internet trying to find a low dose chemo regimen but without success. Does anyone know of a link or have personal knowledge of same? I'm at my wits end. The stress is getting unbearable. We are planning a four day trip to California the end of August to celebrate the 30th wedding anniversary of some friends. Damn the cost - I opted for the ocean front room at a 4 star hotel and will be making an appointment at the spa for a nice massage. I need it bad!! Sorry to go on for so long, but I could sure use some help in finding the information about low dose chemo regimens. Any help would be greatly appreciated. My husband has a network of male friends who are also cancer survivors that he can talk to, but I'm on my own and dealing with this solo.
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