bphyllis

I was also conerned about how he was doing. I am glad he had the feeding tube put in and hopefully it will come out soon. I was reading in a magazine about a new CT scan machine where you stand up during it and they include a television too. The whole machine is open. unfortunately, I don't remember the name of the machine. I hope you feel better Ry too. So of the people at work have had the flu which has lasted two weeks or more.

I agree with Connie B. that it is always enlightening to view other people's experiences in an open forum. That way everyone has the opportunity to learn.

I am kind of like J.C. since I was in a medically induced coma for about 3 weeks maybe more due to aspiration pneumonia and I had a g-tube for about months maybe more. It is hard to remember. My lungs needed time to heal according to the doctors. My cancer was in my throat and the food went straight to my lungs and not my stomach. Once that was fixed the stupid tube came out thank God. The tube wasn't that bad. Just being able to eat and build up your energy again helps you to deal better with all of this. Hope things get better.

Hi, I was on the thalidomide and cpt-11 trial and it did nothing for my cancer. Thalidomide also works very slowly. The PTK and Xeloda was very effective for me and that was an angiogenesis and low dose chemo. I also plan to ask my oncologist the next time I see him about the sensitivity testing.

Hi, I am 49 and have just started the carbo/taxol. I have not had too many side effects so far. This is the 10th day since my treatment and I do feel tired and my shoulder hurts which it always seems to do with chemo. I have always managed to work pretty much full time through everything except when I was first in the hospital for two months in 2001. I only worked part-time during the radiation. If I could live on social security disability at this point I would definitely take it. I just don't see how people afford to support themselves on it if they are single with a child. It is an individual thing. Good luck.

Sorry, I figured out that won't work. I have the list saved as a word document and if anybody can tell me how to post it I would be happy to. Good luck!

Hi, I have a list of the rfa lung centers I can give you. I am not that techy though so the only way I can think to send it to you is to pm you and forward the original e-mail. I think that would work. I know there is a better easier way, but I can try this. Good luck.

Hi, I had throat cancer so I had a lot of radiation that effected my esophagus. They kind of over radiated I guess and my throat surgeon had to do about 10 out patient surgeries where he would do in and stretch the esophagus and sand the scar tissue from the radiation. It was not a big deal and I was back at work in two days. He said I would probably need to do this once a year which I am overdue. It helps with the indigestion too. Of course yours may just get better on its own. Good luck.

The one person mentioned rfa, which I think would be an excellent idea to look into. However, my experience with that procedure so far is to move quickly in trying to get set up for it. I kept waiting on the lung procedure because the internet says that the tumors have to be between 2 cm. and 3 cms. and I don't think that is correct. When the rfa surgeon looked at my CT he was like he could take care of any tumors he could see. It can be a lengthy process and you can continue to do chemo while you pursue it I just want people to be aware they need to consider it early on due to waiting lists, referral paperwork, finding appropriate doctors, etc. Good luck.

The one thing my throat surgeon told me when I was first diagnosed with throat cancer was that it is one of the more curable cancers. Mine unfortunately was very advanced when found with 8 lymph nodes the larnyx the thyroid etc. and then spread to my lungs. So hopefully once the doc removed the tumor she will be ok. Even apparently if you have some reoccurence above the collar bone it is something that can be dealt with. Good luck.

Hi, I am 49 with a daughter about to graduate from high school with honors. So I can relate to the fact that she has so many special activities coming up in the next few months and I am sweating bullets hoping I will be healthy enough not to ruin this important time of her life. I have apparently 12 tumors in my lungs and have been fighting this disease for over two years. I live a perfectly normal life, and have been lucky not to be effected by the disease or treatment so far. I work every day, walk, do my own yard work and housekeeping, etc. I eat non-stop all day to keep up my weight and energy. I excercise a lot. I just had another CT scan on Friday and start carbo/taxol tomorrow. So I am a little stressed out now too. This board helps so that you can see what other people have experienced. I get lots of advice and that can be overwhelming. I tell people I can only deal with things one thing at a time. With the info on this board you can read the info and take what you thinks suits you. It definitely helps to be able to talk the lingo with the doctors. You can like your doctors but you need to be well informed too because they are not always right and rely sometimes too much on statistics. I also have found that my experimental doc does not think like my traditional doc. The surgeons don't think like the oncologists, etc. Good luck. It is doable just scary as hell.

I thought that was truly inspiring and you are amazingly talented! I would love to submit my picture also as soon as I figure out how to do it.

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.

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.

I was on a clinical trial of thalidomide. The thalidomide was a sedative that would cause confusion. Drug side effects, I have found, are things I have to look up on the internet because as good as my doctors are they don't always know I think of all of the side effects of drugs. If your mom has been doing a lot of chemo, it could a side effect of the drugs.