-Cheryl- Posted March 23, 2004 Share Posted March 23, 2004 Hey Group, I met with a Dr. Senzer today, who is the Scientific Director at the Mary Crowley Research Center at Baylor Hospital in Dallas, Texas. I am not a candidate for GVAX as I suspected. Not because I don't have active cancer in my body, but because the FDA will no longer allow reseachers to take a tumor unless it is superficial (like a supraclavicular lymph node or fluid from a plueral efussion which contains cancer.) Dr. Senzer explained that in one study a participant had a nodule taken from their lung via a thoracotomy and the procedure caused hemorrhaging, resulting in that person's death. So, the research is allowed to continue, but is being heavily monitored. However, in three months those restaints may lesson. Dr. Senzer told me that because I had changes in not just one nodule, but all three, including two swollen lymph nodes in my medistinal area, that I appearred to be having a reoccurrence of the disease. However, the changes were minute. I have not had a CT done in three months since Jan., so I am due again. I will know more then. I plan on having it done on this coming Monday. I am aking for prayers please. Now, I did learn quite a bit about some promising trials though, which I am eligable for and want to share with you. The most promising is a trial called TGF Beta2- Transforming Growth Factor Beta2 created by Noverex. Get this- a vaccine is made by other people's cancerous tumors that are similar to yours! Immunological research is really kicking it up a notch!!! There is also Docetal taken with PT100 which is a new drug that turns on the body's immune function to assist in killing cancer. Then there are some other experimental chemos, traditional chemos, and of course Iressa. Now my delima....if I do TGF Beta2, then I can't do GVAX later in any studies, and in 3 months the FDA may lift some of these strict restrictions (like allowing only superficial nodes to be used.) You can't do TGF Beta2 if you have done Iressa. So I am scared to do anything. Any suggestions? I will know more after Mon. about progression of the disease, after my CT. I will also put a call into my onc's office for his advice. Cheryl Quote Link to comment Share on other sites More sharing options...
MO_Sugar Posted March 23, 2004 Share Posted March 23, 2004 If you did a traditional chemo regime would you be eligible? I think thats the way I would go if possible. The chemo may work or at least keep things stable until the trial opened up more??? Prayers of wisdom and healing being sent your way! God Bless, MO Quote Link to comment Share on other sites More sharing options...
Guest Billie Posted March 23, 2004 Share Posted March 23, 2004 Cheryl, I understand your disappointment, as I was not a current candidate for the GVAX either and for the same reason . I will be thinking of you and hoping that you have good CT Scan results. Billie Quote Link to comment Share on other sites More sharing options...
Elaine Posted March 23, 2004 Share Posted March 23, 2004 Cheryl Wow, how exciting about all the information you found out! Was he looking at old scans and saying you had reoccurance? That COULD JUST BE OLD NEWS since you have been doing other therapies the past couple months. Will pray for that to be true. One question some of us had was --why is the trial asking patients to pay for their own surgerY? Did he say? Cheryl and Jack--I continue to send good, good thoughts your way. Elaine Quote Link to comment Share on other sites More sharing options...
-Cheryl- Posted March 24, 2004 Author Share Posted March 24, 2004 Elaine, The scans are from Jan. and I do need to have new ones done. So, it would be nice for the glands and nodules to spontaneously disappear. I didn't think to ask about why participants would be charged out of pocket for a trial? I will try t think to ask that question next time. Mo, you are right about the chemo leaving the other options available, but geesh, chemo makes you sooooo sick, nauseated, tired, and did I mention bald, Ha! Been there done that and certainly got that t-shirt. Oh, and I forgot to mention that this doctor says that the new school of thought in research on BAC is that it could be caused from a VIRUS! Almost all of the BAC and BAC feature cancers respond best to the immunolgical gene therapies. Bille, hang in there, someting may later open up with the GVAX trial in a few months. Where is you cancer located, or what stage are you. Cheryl Quote Link to comment Share on other sites More sharing options...
Nushka Posted March 24, 2004 Share Posted March 24, 2004 Cheryl, We all are greatful for your sharing of information. My thoughts and prayers are with you. I hope everything works out well for you and will be looking for further posts to see what you decide. Nushka, aka Nina Quote Link to comment Share on other sites More sharing options...
Guest Billie Posted March 24, 2004 Share Posted March 24, 2004 Cheryl, I am stage 4, Non Small Cell. My lung tumor is in my upper right lobe, but is very small. However, it has spread to the lymph glands in my neck on left side, my stomach and adrenal glands. The lymph nodes on my neck were very prominant a few months ago, but since my chemo treatments (which ended 3 weeks ago), they can no longer be felt by me or the doctors. I will be having a CT scan in two weeks to see if the shrinkage has occured in the other areas. This actually is very good news for me even though I did not qualify for the trials because of it. So, you are right.... maybe at a later time. And again, best of luck to you with your decision on treatment. We all know how tough that is and will be praying for His guidance to help you with that. Billie Quote Link to comment Share on other sites More sharing options...
-Cheryl- Posted March 24, 2004 Author Share Posted March 24, 2004 Billie, I don't understand how come they couldn't take a node from your neck? Is it because yor neck nodes have almost disappearred? Initially, I showed uptake in a supraclavicular node that disappeared after chemo which would have been ideal for the GVAX trial. Glad it is gone though. I was actually diagnosed 3A-B because my doctor was usure. Cheryl Quote Link to comment Share on other sites More sharing options...
Melinda Posted March 24, 2004 Share Posted March 24, 2004 Cheryl, I am sorry you are not a candidate--but am most appraciative for all the information you posted. We have just started on this LC odyssey--and do not know where it may take us. Your information may help us ask just the right questions somewhere down the road. Thank you and best wishes, Melinda Quote Link to comment Share on other sites More sharing options...
karen335 Posted March 24, 2004 Share Posted March 24, 2004 Hi Cheryl, I don't have any answers, but as MO said, chemo sounds like the way to go for now. You and Jack are in my prayers each day. Thanks for all the information too... God Bless, prayers and gentle hugs from So. California, Karen Quote Link to comment Share on other sites More sharing options...
chloesmom Posted March 24, 2004 Share Posted March 24, 2004 BAC caused by a VIRUS! That is really stunning news. Quote Link to comment Share on other sites More sharing options...
teresag Posted March 24, 2004 Share Posted March 24, 2004 Cheryl, you are faced with a tough decision. I would ask myself, if I were in your shoes, which of the clinical trials is MOST likely to be successful for you? Consider whether there is a chance of being randomized to a control (or "usual treatment") group, and ask the researchers for any preliminary results. If all of the trials seem equal in these respects, choose the one you can enter the quickest. It's typical for one trial to exclude you from taking part in another trial simultaneously. Sometimes trial participation rules out receiving other therapies for a certain time period, e.g. six months. However, taking part in a trial now should not exclude Iressa later on, if needed. So I'd suggest 1) asking what other options might be excluded if you take part in the trial and 2) for how long. You might also consider the cost factor. I was wondering why the GVAX trial is not externally funded. By far, most clinical trials are funded either by the government (NCI) or a sponsoring company, such as a pharmaceutical firm. Private health insurance is unlikely to pay for trials, so you might find yourself with a very large bill. The trial administrators/researchers should be willing to explain the financial details to your satisfaction, including how they will help you to pay for it and why the trial is not funded. Hope these tips help in your decision-making. Best wishes to you, Teresa Quote Link to comment Share on other sites More sharing options...
Guest Billie Posted March 24, 2004 Share Posted March 24, 2004 Cheryl, I had the supraclavicular nodes also, but they have disappeared to the extent that you can't feel them anymore. I am having a new CT Scan in two weeks, but the oncologist says it is doubtful that I have enough cancer tissue (or any) in the lymph nodes to harvest a large enough specimen for the production of the vaccine. The hard part for me is that I am now in "wait and see" mode after my chemo treatments. I feel like I should be continuing to do something to fight this thing instead of just waiting and wondering if it is going to come back. I know you and everyone else here understands what I'm talking about. I think that most of us do want to just keep fighting until they say the cancer is gone. After your CT scan and consultation with your oncologist, you will be better prepared to make a decision about further treatment. Billie Quote Link to comment Share on other sites More sharing options...
Guest Billie Posted March 24, 2004 Share Posted March 24, 2004 Forgot to mention, in relation to cost of the GVAX trial, it is my understanding that the surgical procedure of removing the cancer tissue is the only part not covered by the drug company. This may be because of a liability issue, I don't know. The cost of the procedure could be $2000 or $3000. They did say that some of the tests, such as CT Scans, etc. would be billed to your insurance company. I really did not pay much attention to the financial part of the discussion, so I apologize for not having more information on that. Billie Quote Link to comment Share on other sites More sharing options...
Frank Lamb Posted March 24, 2004 Share Posted March 24, 2004 Cheryl,I'm sorry I can't give any insight but I want you to know that I'm praying for a clean scan for you when the time comes.I'm in the waiting game til mid April as well.Getting close to scan times is NERVE RACKING> GOOD LUCK and thanks for posting the other information Quote Link to comment Share on other sites More sharing options...
Guest phyllisb Posted March 24, 2004 Share Posted March 24, 2004 Hi, I don't know if any of my information helps, but I do go the University of Chicago Research facilty for my treatment. My docs have only had to wait 30 days between trials. They have to wait for the drugs to clear your system before I could start a new trial. They also told me that if I went to standard chemo treatment that may exclude me from any more clinical trials. I did not feel that I had a choice and chose to try carbo/taxol with Radiofrequency Ablation instead. I am now on my second round of chemo, with not really any bad side effects. I am losing my hair for the first time in two years. That is kind of rough. When I met with the traditional oncologist for the rfa, he said that I needed to be aware that the drugs (I can never think of the name) (angion?) that I had been using such as thalidomide, PTK, etc. were slow acting drugs. Luckily they were paired with a chemo drug. He also said and I should have asked him more about this that he believed that tumors needed the blood vessels in order for the chemo to reach them. I don't know if that is true since I had great success with PTK/Xeloda. Thanks for all of the info on the vaccines. I was thinking of trying them myself if all else fails. It is a tough decision to make unfortunately. Good luck. Quote Link to comment Share on other sites More sharing options...
Don Wood Posted March 24, 2004 Share Posted March 24, 2004 Cheryl, I pray that one of these trials is just what you need. Don Quote Link to comment Share on other sites More sharing options...
mhutch1366 Posted March 25, 2004 Share Posted March 25, 2004 Good luck, Cheryl. I am sure you will find the trial or treatment you feel will work best. God bless and Keep you, girl Quote Link to comment Share on other sites More sharing options...
Lisa O Posted March 29, 2004 Share Posted March 29, 2004 prayers are coming your way Cheryl. I'll be looking for word. Lisa Quote Link to comment Share on other sites More sharing options...
Connie B Posted March 29, 2004 Share Posted March 29, 2004 Wow Cheryl, all that information must seem a little overwhelming. So much to learn and understand. I admire your courage to fight with ever inch of your being. Scared YES! But DETERMIND! That's a GOOD THING! God has a plan for you. You have given so much to so many right here on the board. Your so KIND and GIVING! I wish only the best for you, and hope that all is clear on your next CT scan. Hope Jack is feeling better too. Best wishes to you both and good health. Quote Link to comment Share on other sites More sharing options...
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