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I saw the docs 9-17


Don M

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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.

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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

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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!!!

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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

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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

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wow Don what a great plan! I love this news and conitnue to pray for your total success in the coming months. I'm also glad to know the pneumonia and radiation inflammation are getting better.

(((hugs and more hugs)) this is GOOD news!!

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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!

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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 :wink:

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