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Posted

Hi, I haven't posted in a while because I have been busy working and trying to arrange for rfa on my lung tumors which has been extremely frustrating. The last clinical trial of thalidomide and cpt-11 did not work, and I am having a terrible time getting over the side effects of thalidomide while being off of it for at least a month. The insomnia, constipation, irritability, mood swings, and facial edema get better and then seem to come back for a few days not to mention the fatique.

I had an initial appointment with the surgeon who would do the rfa. I have three approx. 2cm tumors in my right upper lobe, my right lower lobe, and my left lower lobe. The problem is I have 5 tiny sattelite tumors in my right lobe and 4 in my left lobe. At first he said I wasn't a candidate, but because of my good health and being just 49 with the cancer being confined to the lungs he was willing to do 3 procedures and remove the tumors with rfa if I could get a head and neck oncologist to go along with this. I had an appointment with an oncologist at the hospital, who at first was totalling against the procedure. Said it would burn holes in my lungs and/or possibly make the cancer worse, but then he decided too that I was really healthy and relatively young. However, he wanted me to do 3 rounds of carbo/taxol first to try to shrink all of the tumors for less trauma to the lungs which made sense to me and he would write to my oncologist up North to set this all up. He also wanted me to do a second line chemo for two rounds also before the rfa, but if I got sick or had problems he promised to put me in the hospital himself for the procedure.

Went to see my doctors up here that are mostly experimental docs. These docs too don't like rfa and I had to go through the whole thing again. Plus, they felt that standard chemo would only have a 30% chance of shrinkage, but really didn't have another experimental drug to try plus I felt that I should try standard chemo. He said that cancer cells become resistant to chemo after a while, but the only chemo I have had was two rounds of cisplatin in 2001, 5 rounds of Xeloda, and 5 rounds of cpt-11 with good response from the Xeloda. He also told me how he saw rfa for me as only a pallitative measure as opposed to the surgeon's opinion that it could eliminate the present tumors and extend my life. I now have everything in place, but am physically and mentally exhausted along with being angry and frustrated. If they keep telling me I am dying more or less then what difference does it make if I try a cutting edge technology with what I think is a logical procedure of chemo. Any thoughts of loop holes in my reasoning would be appreciated.

Posted

I have gotten sort of the same response from doctors about RFA to the lungs. I haven't pursaued it as thoroughly yet as you have--the RFA doctor here lost my scans before he had a chance to look at them, so he hasn't even determined if I am a candidate. But I have had oncologists tell me it's not a good idea because it is only for tumors that can be seen, while chemo is systemic. But the RFA surgeon I have been talking to sees chemo and RFA as working together--each supplementing the other. And so far, chemo hasn't done much for me--I don't know why I wouldn't want to consider everything that could help at this point. It is very frustrating! I hope your search for answers improves.

Becky

Posted

I was just a caregiver but from what I have seen and learned from lc is that whatever is there, go for it when possible. Like one dr said to my Buddy regarding a treatment, "what have you got to loose". Doing nothing is not the answer if you want to try and beat this lc.

Posted

Thank you for the respones. I was starting to feel like an idiot for even pursuing other options. I spoke to at least 3 oncologists with the same negative attitude toward rfa. However, the rfa surgeon did not see the procedure as a huge problem. Also, I have been e-mailing with another lady on this board who has had the procedure twice and despite some complications she was only in the hospital 4 days and is doing great now and is cancer free. I think oncologist only believe in chemo treatment. They just don't want to accept rfa as another treatment option. I do now have a plan that I will do standard carbo/taxol to hopefully shrink the tumors and then do rfa to eliminate whatever is left. The rfa surgeons also believe that if a reoccurance happens then they will treat that tumor/s also. Life is just one big old challenge.

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