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19 yr old with Stage IV lung cancer (mastatic)

cim1806
Posts: 4
Joined: Nov 2010

Hi I'm new here and desperately need some advice. In June my son had a tumor that he had been covering up on his arm almost the size of a softball removed and it was sarcoma. They removed it immediately and the Dr. mentioned he had 2 small nodules in his lungs that they would keep an eye on. He went through radiation just fine (6 weeks) and now his last CT was a week ago and after being very persistent about asking what stage he is I was told Wed. that he was stage four and they want him to start chemo this Tues. with Doxorubicin and some experimental drug that only 60 people in the entire U.S. have agreed to try. Other than having nuerfibromotosis he is extremely healthy and has never been on meds. Why do they want to have him in an experiment with very bad side effects and no proof of working at all? What are the other treatments and is surgery an option? He has one nodule in each lung. One is 12.4 x 12.8 mm in diameter and the other 3.9 mm in diameter. Am I even making any sense? My husband died last year and now this! My heart is bleeding for him. But 10 yrs ago I was told he had a huge inoperable tumor on his brain stem and cried for 3 days and then just prayed and it stopped growing and is still there and so is he. Thanks for listening.

hdbilly1's picture
hdbilly1
Posts: 24
Joined: Nov 2010

I have lung cancer and am in stage IIb. I was also asked to be part of a clinical trial. With these clinical trials, some patients are getting the real drug and others get a placebo. In each case, the patient always gets at least the regular chemo drug that they would normally be prescribed and a 50/50 chance they may get the trial drug. Yes in some cases, the side effects can be terrible. But in most cases the standard chemo drugs usually have side effects that are less than pleasant anyway. It's really up to you and you son if you want to take part in the trial. I personally opted not to take part as I didn't feel that I could physically handle it after having part of my right lung removed. The chemo drugs they used for me had some pretty nasty side effects as it was and I didn't really want to experience any more at that time. If I have to go through any more chemo treatments, now that I have healed from the surgery, I may choose to take part in a trial. I hope this helps and please know that my thoughts and prayers will be with you and your son. May God be with you, Bill

cim1806
Posts: 4
Joined: Nov 2010

Wow, thank you for your reply and may God be with you also! It means so much to have someone who is so informed as you are reply. It didn't even cross my mind about the placebo. I'm so sorry that you had to go through so much. I'm so scared and nervous for my son. There is so much that he hasn't done in life and he never even touched a cigarette. What really bothers me about this trial is that only 60 people in the entire United States have agreed to even try it. I have been told it can damage all his organs and can also cause congestive heart failure. I don't understand why they are pushing it so hard on him. He and I talked about it last night and we both feel real uneasy about it. No one has even talked with him about any other options. I've been dealing with the University of Chicago and last night talked with someone from the Cancer Treatment Centers of America and I submitted a form for them to accept him as a patient since Illinois Cancer Care has been treating him so cold. Not taking time to explain anything or even act like they care at all. Sure it is only 5 min away but I feel they just want to use him as a Guinea pig maybe since he only has medicare as his ins. Can anyone please recommend a good place for him? It is crazy how cancer just turns everything into chaos. Without having faith in God I wouldn't be able to handle watching all this happen to my son. My prayers will be with you also Bill....Cindy and Patrick

hdbilly1's picture
hdbilly1
Posts: 24
Joined: Nov 2010

Hi Cindy & Patrick,
I went to Akron General Medical Center in Akron, Ohio. They treated me like I was royalty. I too only had medicare but to them, I was a human being that was sick and needed good care. The team I had was absolutely amazing and I would recommend them to anyone. I can give you more information on my Doctors like phone numbers etc. if you would like. Just let me know if there is anything I can do to help. Again you will be in my prayers, Bill

cim1806
Posts: 4
Joined: Nov 2010

I will keep you updated and hopefully you will stay well!!!

Cindy

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