Don M Posted June 8, 2007 Share Posted June 8, 2007 I finished my ck treatment Thursday. I did not have my consultation to discuss the plan and what not until the first day of treatment. I went in there assuming that I was going to be treated with a cure being the objective, but they told me that if I received a dose high enough to kill the tumor there was too much risk that I would get pneumonia from radiation induced pneumonia. The problem was that I had the IGRT a year ago and the center of the tumor already had received significant radiation and so they did not want to deliver another super dose. They think that the dose I got will be sufficient to shrink the tumor and to keep it inactive for a few years. They are buying me time until something else comes along. I was surprised and disappointed, but I went along with it. I have to trust their assessment of the risk. Maybe it will die anyway. I am going to start taking some curcumin in two weeks. I hope the curcumin in combination with the cyberknife kills it anyway. One of the radiation oncologists said he would not rule out doing ck a second time if the tumor starts growing again. I am very reluctant to do chemo as a follow-up. It has resisted 2 previous chemos. I may try tarceva if I don’t get much response in 3 to 6 moths or maybe avastin-tarceva combo. It looks like I may have this unwanted cancerous entity for some time. The docs consider me rather an odd duck in that my tumor has not metastasized and I have had no new disease in almost 2 years. They still won’t go for the cure though. Once you have only one lung, the fight becomes more difficult because you have to balance every thing with retaining the ability to breathe in that one lung since you don’t have a backup lung. I had thought that radiation caused fibrosis only occurred in healthy lung tissue that got overexposed, but apparently, you can get it if a tumor is over zapped. I suppose the tumor turns into scar tissue or fibrosis and you lose some capacity to breathe and get pneumonia a lot more easily. I think I will ask the docs on the ck message board about the fibrosis process in the tumor. Don M Quote Link to comment Share on other sites More sharing options...
barbara5452 Posted June 8, 2007 Share Posted June 8, 2007 Don, I too am disappointed, but sounds like there is hope there also. You are a fighter and you have beaten the odds before and you will again. As for the fibrosis I was told that also, I now have a bit of pneumonia and scheduled a ct on Mon. apparently from what they told me it is radiation induced, hoping the antibiotics work as I have felt awful and am ready to start feeling better. Best of luck. Keep us informed. Quote Link to comment Share on other sites More sharing options...
Maryanne Posted June 8, 2007 Share Posted June 8, 2007 Hi Don, I am sorry to hear about your dilemma, expecially everything you went through to get to where you were. I could only imagine your dissapointment when they told you they could not give you the right dosage. I pray this will work and like you said at least it should buy you time until something else will come along. Then again, you never know maybe this will work. Everything crossed here that it does. I really am sorry for the dissapoinment you are feeling. Let's just pray this work. If not then something will come along. I am confident of that. Let us know what the Docs tell you on the CK message board. Maryanne Quote Link to comment Share on other sites More sharing options...
recce101 Posted June 8, 2007 Share Posted June 8, 2007 Don, my kahuna friend out here says not to worry -- all those multilingual chants were more than enough to make up for the smaller dose of radiation. Let us know whenever you're ready for another treatment! Aloha, Ned Quote Link to comment Share on other sites More sharing options...
fillise Posted June 8, 2007 Share Posted June 8, 2007 It always seems like it is such a mixed bag with this desease doesn't it? I'm sorry it wasn't what you thought it was going to be, but this treatment combined with the earlier radiation may indeed be enough to make the tumor die out for good. Just glad you came through the procedure safely and you are back with us. Susan Die Tumor, Die! Quote Link to comment Share on other sites More sharing options...
Shelley (MLC) Posted June 8, 2007 Share Posted June 8, 2007 Wishing you the best....That tumor doesn't stand a chance with your positive attitude. Shelley Quote Link to comment Share on other sites More sharing options...
Heather_T Posted June 9, 2007 Share Posted June 9, 2007 Don, I am sorry you did not get the news that you deserved. I am with you though maybe it will just kill it anyways. Quote Link to comment Share on other sites More sharing options...
rvillella Posted June 9, 2007 Share Posted June 9, 2007 Sorry that the news wasn't better Don. I believe that the ck along with what you had earlier will do the trick. As a fellow one lunger I know just how they see us. They tell me that I can only get so much radiation and then they will just wait and see what happens. Hang in there. You're a fighter and a survivor. Ralph Quote Link to comment Share on other sites More sharing options...
carolhg Posted June 9, 2007 Share Posted June 9, 2007 Don I still think that tumor will die. It has not metastasized after all of this time, ck may be the very kick it needed to die. Carol Quote Link to comment Share on other sites More sharing options...
Wendy Posted June 9, 2007 Share Posted June 9, 2007 Don, Maybe since your cancer is an odd duck - you may surprise all of the doc's and get better results than they expect. Hang in there, you are a fighter. You know you have everyone here behind you! Wendy Quote Link to comment Share on other sites More sharing options...
Don M Posted June 9, 2007 Author Share Posted June 9, 2007 so yeah.. thanks for the support and good wishes everyone. I especially liked the chant. don m Quote Link to comment Share on other sites More sharing options...
alexan Posted June 9, 2007 Share Posted June 9, 2007 Don, the tumor will died, is deadd. Thinking of you hugs bucky Quote Link to comment Share on other sites More sharing options...
lc46 Posted June 9, 2007 Share Posted June 9, 2007 Don Just wanted to say I'm thinking about you and wishing you the best with follow up treatments Dar Quote Link to comment Share on other sites More sharing options...
trish2418 Posted June 11, 2007 Share Posted June 11, 2007 Don, sorry about the mixed results, but so glad you came through ck ok. I'm just going to believe that the tumor will be kaput in a few months. Hang in there. Trish Quote Link to comment Share on other sites More sharing options...
Nushka Posted June 12, 2007 Share Posted June 12, 2007 Don, I know this is not what you expected and I am sorry but who knows...this sucker may die with very little treatment at this point. Keeping you in my prayers. Nina Quote Link to comment Share on other sites More sharing options...
spicysashimi Posted June 12, 2007 Share Posted June 12, 2007 Don, I am a big fan of curcumin, but the problem is that it has like zero bioavailabiltiy. You just poop it out. I read an artile that an adjuvant supplement named BIOPERINE enhances curcumin in blood by about 2000%. Look at the research on this site: http://www.bioperine.com/ But buy this product: http://www.evitamins.com/product.asp?pid=3951 And for those of you on gemzar, it greatly enhances the apoptotic effects of when taken with gemzar (curcumin and bioperine). good luck, aaron Quote Link to comment Share on other sites More sharing options...
J.C. Posted June 12, 2007 Share Posted June 12, 2007 Don, Sorry that the plan was changed and that you have more to think about future treatment. But the chances could be that the cancer will give up by itself, knowing that you will always fight it. Take care Jackie Quote Link to comment Share on other sites More sharing options...
Don M Posted June 12, 2007 Author Share Posted June 12, 2007 Aaron: I get my curcumin from a site that claims to use the same formulation as that used for MD Anderson research…they say they use the same supplier as MD Anderson, the Sabinsa Corp… and they say bioperine is included in the product at the rate of 5 mg for a 1000 mg pill. The study shows a ratio of 10 mg of bioperine for each 1000 mg of bioperine. They seem to be legitimate. I talked to them on the phone just to see how forthcoming they are in conversation. The bottle and the website use curcumin C3 Complex and Bioperine as part of the label and they are acknowledged as registered trademarks of the Sabinsa Corp. https://www.agelesscures.com/index.php? ... YAod1hLArw Here is an article that Sabinsa released that says MD Anderson uses their curcumin formulation. http://www.npicenter.com/anm/templates/ ... zoneid=176 The bioperine pills look like they would be useful for other antioxidants which I have been taking. I will get some. P.S. I found a page on the Sabinsa Corp website that identifies its buyers. Ageless cures is one of them. http://www.curcuminoids.com/users.htm Don M Quote Link to comment Share on other sites More sharing options...
Kasey Posted June 12, 2007 Share Posted June 12, 2007 Once again, Don, you have not ceased to amaze me. I just believe with all the tx and rebounds that you will prevail in the end. You are always prepared with your research and next step. I'm glad you are so proactive.......helps ALL of us. Good luck ~ and that tumor is just gonna have to give up pretty darn soon. Kasey Quote Link to comment Share on other sites More sharing options...
daddyslittlegirl Posted June 16, 2007 Share Posted June 16, 2007 Hang in there. Remember a lot can change in a few years. They are coming out with new treatments everyday. you are a fighter. Many prayers for great results from the ck! Quote Link to comment Share on other sites More sharing options...
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