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radiation concerns, help


natalie

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My mom is starting radiation tomorrow. She had an appointment with the radiologist today and he said that he is going to radiate her head for three weeks and is going to do it 5 days a week, once a day (My mom has about 4 lesions in her brain to radiate). He provided my mom with a book about radiation and in the book my mom read that with people that are terminal, they do a three week radiation just to ease. First of all, she was never told she was terminal, nor have I seen that people with a brain radiation only get three weeks. Isn't is usually a six week radiation? What about twice a day? Do you think he's perceiving my mom as a lost cause or is this a way they actually do treat radiation? Do any of you have experience in this? I'm going to call the doctor tomorrow to ask further and we are going to get a second opinion but I thought someone could give me insight. Also, we have been told by two doctors that they don't do radiation the same time as chemo...that its too hard on the patient. Is this true? In reading some of your postings, it seems that a lot of you are getting both radiation and chemo treatments at the same time. I'd appreciate anyones insight. Thank you!

Natalie

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Natalie -

I understand your concern(s), but you're overlapping two different scenarios here. From my experience and what I've been told:

Radiation to body parts (chest, etc.) are usually for 6 weeks, or can be done twice a day, but usually radiation to the brain is for a shorter period.

Chemo and radiation IS usually combined when it is radiation to body parts other than the brain. Recent studies show that chemo combined with radiation to the brain can lead to more, or more serious side effects, i.e. memory loss, decreased mental capacity.

By all means talk to the doc and get a second opinion too - just wanted to share a little bit to help calm you down until you can reach one of them!

Sincerely,

Sandy

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Natalie, you mentioned that your mom has 4 leisions to the brain..do you happen to know their sizes? Have you looked into Gamma Knife? It is a procedure that has been around for decades, but until recently was only available in Penn. and, MD. It is a very non-invasive procedure, done in 1 treatment for all mets at once. I have posted more detailed explanations of it in the Late Stage NSCLC forum, look for an orig. post by Alyssa re:gamma knife, and I posted a reply to it.

My dad had Gamma Knife in January 2003, and experienced no side effects. The gamma knife is a high dose of radiation that is pinpointed, using 3D MRI, with dosages calculated for each individual tumor. The tumors are killed in that treatment and then reabsorbed by the body at the same rate as their orig. growth rate. Its pretty amazing stuff. If you'd like to ask me any questions, feel free to message me, or e-mail me. My dads oncologist immediatly scheduled radiation for the brain mets, but I called him and told him to cancel, because I got a nerologist that does Gamma knife, and he saw my dad and said he was a candidate for the procedure-so we are going with that. He was very pleased at our research. The hospital that offers the procedure had just purchased the equpment 6 months before my dad needed it!!! As I understand it, most doctors don't even know that the procedure is becoming more available. The neurologist that did my dads gets patients from all over the country. He has been doing the procedure for years, traveling to PA and MD to learn how to do it, and then implement it himself.

Keep us posted on how your mom is doing. I'm really not sure about what dosages, or how many would be done with regular radiation. I would ask your moms onc. ALL of the questions that you have, so that you're not left in such a confusing place. Take care, Deb

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Natalie-

My husband had 22 whole brain radiation treatments after diagnosis. He subsequently had stereotactic radiosurgery to 3 of his 5 lesions. He has not been told he is terminal...we have been told that if a reoccurance occurs he can have stereotactic again.

When someone asks me if my husband is terminal...I say "We are ALL terminal!!"

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Natalie

My sister had her whole left lung removed in April of 2002. She then developed a brain tumour in December of 2002. The tumor was surgically removed in January of 2003. She then underwent whole brain radiation for two weeks. She went every day for 2 weeks for a total of 10 sessions. Just a little info on how my sister was treated.

Kelly

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Natalie, I can't speak for brain radiation, but Lucie had three different tumors on bones (mets) that were irradiated for 1 1/2 weeks or 2 weeks, five days a week. She is not terminal any time soon. The radiation was done because those tumors were threatening the integrity of the bone sites. She has two other bone mets that have not received radiation because they were not threatening the bone, and chemo was done, is being done, to take care of the rest. Don

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You guys are sincerely the best! I live 2 hours away and yesterday I made the decision to leave work and drive down there to talk to her radiologist. While I drove down there, it dawned on me what I have to do. I have to have my parents move in with me for a while so I can help with everything. There is a great facility here in Sacramento. My parents don't have the energy to ask questions find out about it, etc so I've been their advocate. After meeting with their radiologist yesterday I realized how important it is to know what they are doing. Right of the bat, he told me that he didn't have time to answer my questions. He said that if I had questions about the radiation that he would have to cancel her appointment and reschedule in three weeks. I said I had just one question regarding the radiation that would take about a minute and that if he could just answer that one question before. I then said I had a lot of questions not pertaining to the radiation but about the next steps, what she should be eating, supplements (the doctor did not like that at all). I didn't like him, my mom didn't like him and my dad didn't like him. I hope I'm not making a mistake here, but for the next few days, he's going to treat her and then they are going to transfer her treatment here in Sacramento. He profusely told me I was making a mistake. He also said that he wasn't going to refer me a second opinion and that I was too late for a second opinion! I then said, well if you are okay with what you've prescribed, then you shouldn't have a problem...the doctor in Sac can continue on the same schedule. He said then he was going to discontinue her treatment. I said to absolutely not to discontinue it...time is of the essence here. I reminded him that we were speaking of my mother, who is the world to me and that I would do everything possible for her. I reminded him that I wasn't challenging him, I just want to be informed. I told him that I was confident that he was extremely qualified and a good doctor but that I don't go into things blindly. I asked him, if this was your mother, wouldn't you be the same way. I FINALLY saw some humanity from this guy at this point and he calmed down, Kaiser contracted with this guy, so I'm wondering if it's a "contract" issue. I know its not the best thing to transfer during this, but I do think it's best for my mom to be around her family and with someone that is going to be an advocate for her. My parents said okay and we are transferring her over to Sacramento to get treated. Am I crazy here? I could sense relief in my mom that I was there and it reiterated that it would be best for me to be with her through this every day. I've told her oncologist that through the transfer I wanted to make sure she would miss one day of radiation in the whole three weeks, so it shouldn't be a problem.

I do have another question...he said once they do radiation, they can't go back and do it again (reason for my insanity with the doctor yesterday). Is stereotactic radiosurgery a different procedure? Gamma Knife is definitely something we are considering if this doesn't do the trick.

This website is great! It has helped so much! Thank you everyone! Once I get a grip on all of this and gather all my information, I will be there to offer all of you support and answer questions too. Thank you, thank you!

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Natalie,

I know others here will have the answers to those specific questions, but I wanted to give you a HIGH-FIVE and tell you that you ABSOLUTELY did the right thing and you are a FABULOUS daughter! Keep at it and on top of those doctors! Your parents must be so proud to have you in their corner! God Bless you all.

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Natalie,

I loathed my sister's radiation oncologist. He had zero compassion and a huge Napoleonic complex. He told my sister basically the same type of thing. What he didn't tell her was that they do Gamma Knife on up to 7 lessions and you can have it more than once. There are some variables such as size of lessions and locations, etc. I specifically asked her radiologist that question and he said, "Oh, we don't treat brain mets that way" Well her nero consult at UVA disagreed and stressed that she should of had only Gamma Knife at that point. There are some side effects to whole brain radiation. Good Luck to you and your mom,

Mary

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Natalie, I agree that you did the right thing. Any doctor who gets defensive about a second opinion is suspect in my book. I had a few choice wourds also with Lucie's radiation oncologist -- it must be something in their training that they lack people skills. Anyway, it is my understanding that once an area is irradiated, it cannot be irradiated again because of damage to the area. Keep up the good work as the advocate and loving daughter. Don

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