Don M Posted September 19, 2007 Share Posted September 19, 2007 We saw my docs at Swedish Cancer Institute yesterday. There was a bad traffic jam and I consulted with my radiation onc by phone at her office since she was delayed in traffic. She asked me how I felt after I had been treated for pneumonia and radiation inflammation. I told her I had a 100% improvement. She took that as a good indication that the apparent tumor growth seen on the PET/CT scan was actually pneumonia radiation and inflammation. She said that if I had not responded to the treatment then it would be likely that I had tumor progression. I told her I had an appointment to see Dr. West later and she said to keep that appointment because he would want to see me clinically. She said that the likely next step is to rescan in a month or 2 and see what the tumor looks like without the pneumonia obscuring things. She also said that probably Dr. West would not recommend any chemo or targeting therapy until the pneumonia and pneumonitis is clearly gone. She said she would call Dr. West and talk to him. We went to see Dr. West. He had talked to my radiation onc. They agree that I should wait a month or 2 for the pneumonitis and pneumonia to clear up before I do any systemic treatment. He said that my 2 best choices would be tarceva or taxotere. I told him I was leaning towards tarceva. I have remote smoking history and I think I will just give tarceva a try. I am going to have a chest ct scan in a month to check on the progress of the pneumonitis and a month after that I will have a PET/CT scan mainly to see if the SUV is going down. Hopefully there will be tumor reduction too. Both docs think that it is more likely that the feature identified as new nodule next to my big tumor is actually a new malignancy rather than a pneumonia related feature. If I have no big tumor progression and the nodule continues to show uptake and increases in size, I can have it treated locally and kill it. My radiation onc says that RFA could be a good choice this time because the nodule is so close to the surface the lung. One nice thing about RFA is that it gives instant gratification. I would not have to wait for the tumor to die. Dr. West thinks I may have a very slow metastatic process occurring. He says my cancer could be indolent in terms of spread. It is hard to know if the cancer on my right side came from my left side or not. If I do have a metastatic nodule, it is the first in 2 years and that would be a slow spread indeed. In any case, it could still be treated locally if the big tumor is not progressing. I asked Dr. West if the cavitation occurring in my big tumor is the result of the tumor just naturally going hollow because of its size, or could it be the result of treatment. He said that the tumor often outgrows its blood supply and can be dying in the middle. We then talked about the problems of using Avastin with cavitating tumors and how it can cause bleeding. I told him I had been using 8 grams of curcumin a day and one of its properties may be that it also attacks the blood supply of the tumor. He said I could have the same problems as I would have using Avastin if it has anti-angiogenic properties so I said I would cut it down to 4 gm a day. I also am not going to take any blood thinners. Dr. West was not concerned about the small nodules in the rest of my lung, about the lesions in my liver or about the swollen lymph nodes found in the chest ct scan, because none of them showed uptake. His main concern is possible tumor progression and a possible new malignancy. So, I may not have tumor progression, I will have to wait and see. Also the next PET/CT scan should confirm whether or not I have a new malignant nodule. Although Dr. West thinks I am probably dealing with a progression scenario, I as usual, will consider the cancer on the way to being beat, eventually. It is still good, though to be cognizant of the other possibility of continued progression through the years, but I have a beat it attitude and don’t feel that I am in any way in dire straits. Whether or not I have progression, and if I don’t have a new nodule, I am going to do tarceva to chase after the big tumor in a couple of months. If it is clear I have progression of the big tumor, I will do tarceva in 2 months no matter whether I have a new nodule or not. I would have no local treatment. My most immediate threat would be the big tumor if I have progression. If I have no progression of the big tumor and I have a new malignancy, I will probably get it killed with RFA and then proceed to tarceva to go after the big tumor. I don’t think there would be any pneumonitis issue with RFA and I think I could begin tarceva immediately after RFA. I feel like I have a sort of a reprieve. I was not eager to start systemic treatment right away anyway. Don M P.S. I have had second thoughts about taking any more curcumin at all. If it has the potential to make my tumor bleed, I am going to stay away from it. Quote Link to comment Share on other sites More sharing options...
fight Posted September 19, 2007 Share Posted September 19, 2007 Don, I really admire how you always have all your options researched and you don't waffle on what treatment you want to happen next. You a real take charge kind of a guy. Good for you! As always it sounds like you have good plan in place and are ready to fight whatever might come next. I know that you will prevail! Take Care, Rachel Quote Link to comment Share on other sites More sharing options...
RandyW Posted September 19, 2007 Share Posted September 19, 2007 Don you could be my corner guy any day of the week. THats a boxing metaphor for thoise who may not get it and a compliment of high form. Glad things are in order and you have it all sorted out. DIE TUMOUR DIE!!! Quote Link to comment Share on other sites More sharing options...
recce101 Posted September 19, 2007 Share Posted September 19, 2007 Sounds good, Don! Aloha, Ned Quote Link to comment Share on other sites More sharing options...
Welthy Posted September 19, 2007 Share Posted September 19, 2007 Don -- the man with the plan! I love it. Best wishes for slow or no growth. Welthy Quote Link to comment Share on other sites More sharing options...
shineladysue Posted September 19, 2007 Share Posted September 19, 2007 Don, I want to wish you well on your current plan of action and thank you for sharing everything is such detail. Providing such detailed information is a real gift to many . I'm sure there are those who can relate to some of your findings and will be inspired to ask more questions of their own doctors. You seem to have left no stones unturned. I'm sending lots of prayers to help along the process. Keep up the good fight, Don. Sue Quote Link to comment Share on other sites More sharing options...
wendyr Posted September 19, 2007 Share Posted September 19, 2007 Don, sincere wishes that the tarceva miracle will work for you. Good Luck & God Bless wendyr Quote Link to comment Share on other sites More sharing options...
Heather_T Posted September 19, 2007 Share Posted September 19, 2007 Sounds like you have everything covered Don. Quote Link to comment Share on other sites More sharing options...
carolhg Posted September 19, 2007 Share Posted September 19, 2007 Don, I love the way that you research your options and know what all is available. Praying for you and chanting "DIE TUMOR DIE". Carol Quote Link to comment Share on other sites More sharing options...
dadstimeon Posted September 19, 2007 Share Posted September 19, 2007 Don, Glad to see you have a game plan, prayers for the best. Keep up it up, you are an inspiration to many! Rich Quote Link to comment Share on other sites More sharing options...
J.C. Posted September 19, 2007 Share Posted September 19, 2007 Don, Glad for the plan. Did you hear about the future Curecumin in a nasal delivery system that send the formula directly to the lungs....... (Steven M Schorr) They have hig hope that Curcumin used this way would save the body from side effects (not needed) from the pill. You always have so much research in all the plans you make that reading your posts is an education by itself. Good wishes Jackie Quote Link to comment Share on other sites More sharing options...
ztweb Posted September 19, 2007 Share Posted September 19, 2007 Wow Don. I am amazed at your diligence in your own health care. We all have much to learn from you! I, too, look at this as a reprieve...and continue to pray for more of that to come! Blessings Don! Jen Quote Link to comment Share on other sites More sharing options...
fillise Posted September 19, 2007 Share Posted September 19, 2007 Don, It sounds like, you Dr. West, and your radiaction onc. have a good plan. I'm glad you don't have to take systemic treatment and can try Tarceva and (perhaps) RFA. I draw a lot of inspiration from the methodical way you have successfully fought this diease. You know we will be here for you as you move through the next few months. ((((Hugs)))) Susan ps--DIE TUMOR, DIE! Quote Link to comment Share on other sites More sharing options...
trish2418 Posted September 19, 2007 Share Posted September 19, 2007 Sounds like good news to me! Good luck with Tarceva. Trish Quote Link to comment Share on other sites More sharing options...
nyka69 Posted September 20, 2007 Share Posted September 20, 2007 I love your beat it attitude! I am always amazed when I read your posts at how knowledgable you are about your condition and all the available treatments. Were you a doctor in a former life? Glad you are feeling better and wish you much success! Quote Link to comment Share on other sites More sharing options...
Kasey Posted September 21, 2007 Share Posted September 21, 2007 All the ducks lined up, Don, just as I expected !!! Sounds reasonable, doable, and WORKABLE!!! Best of luck with it. Kasey Quote Link to comment Share on other sites More sharing options...
alexan Posted September 23, 2007 Share Posted September 23, 2007 thinking about you. I admire you. You have all the knolewe & the strenght to survive for ever. hugs bucky Quote Link to comment Share on other sites More sharing options...
Maryanne Posted September 23, 2007 Share Posted September 23, 2007 Don it has been amazing everything you have been trough. You are the energizer bunny, nothig stops you, you just keep gong and going. You are an incredible individual. I admire you so much! I pray the the tarceva shrinks that tumor. So glad you have no new nodules. Maryanne Quote Link to comment Share on other sites More sharing options...
sharonjo Posted September 24, 2007 Share Posted September 24, 2007 Don, I wanna be like you when I grow up! You always have a game plan, and never let the cancer get you down. I love your winning attitude! Best of luck with your upcoming scans. Die Tumor Die! God Bless, Sharon Quote Link to comment Share on other sites More sharing options...
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