Alyse Posted January 31, 2003 Share Posted January 31, 2003 We have just come back from the oncologist office and are trying to process the news we just recieved. My husband has stage IV lung cancer with brain mets. We had exceptional results over the last 7 months. Two of the 3 brain tumors are no longer appearing on the MRI. The tumurs on his midumstinum has shrunk 50 to 95%. Now 5 weeks between MRI's and CT Scans, we are informed that the tumor in his brain has grown 50% and 2 tumors in his chest have grown 50%. We were reallyl taken by surprise. The have always told us that surguy was not an option on his brain but now that are talking about using a gamma knife. Please let me know what you know about them and how they work. Thank you guys for always being there. Alyse Quote Link to comment Share on other sites More sharing options...
Guest Posted January 31, 2003 Share Posted January 31, 2003 Hi Alyse, Not sure if you found this already....but, check out in Forum Family Members/Caregivers- under topic Mom is falling, Renee and Debraoo are discussing Gamma Knives in the first two posts and Debraoo seems to know alot about it because her father had it done. She told Renee to email her for more questions. I hope this helps you!!! Praying for you and your family Laurie Quote Link to comment Share on other sites More sharing options...
Debaroo Posted January 31, 2003 Share Posted January 31, 2003 Alyse, Let me start by saying that I am sorry that you and your husband are going through this. My dad had gamma knife on January 9th of this year. He had 3 mets to the brain (NSCLC). When my sister and I researched lung cancer upon Dad's diagnosis (Jan 2002) we had decided long ago that if/when it metastisized to the brain, we wanted to get him Gamma Knife if he were a candidate for it. We met with the neurologist on December 31st, we brought the MRI films so that he could see them. From what he told us our dad was a definate candidate because: he didn't have more than 5 tumors-they had done GK on as many as four, but more than that would require possible surgery or another procedure, and also the three mets were less than the maximum of 4cm. (one was 2.5cm one was 2.0 and the other was almost 1.0cm). That being said, we were also aware that (and expected) by the time dad went in for the GK there may be more mets, and the ones he had would probably be larger. Thankfully, the three stayed the same size and there were no other mets. Gamma Knife has been around for a couple of decades and has really been perfected and is becoming more available. The two hospitals on Long Island (where we live) just opened their centers in June of 2002, so we lucked out. It has a 98% success rate, and, unlike whole brain radiation, kills the tumors-which are then re-absorbed by the body. The re-absorbtion happens at the same rate that it took the tumors to grow in the first place-since Dads were slow growing, they are re-absorbing slowly. A steroid is perscribed before, during and after GK is done, as the brain swells more after GK, but than goes down. Gamma Knife is radiation at high and precise doses. Dads procedure went as follows: 1. met with neuro sergion 2. the next week met with radiologist and had GK explained and scheduled GK procedure 3. Dad went to hospital (only required a one night stay!) early in the AM and had a double grain MRI done which is than read on a special computer that showed his brain in 3D- this allows the neurologist, radiologist and nuclear physisist to see if there are any sprouting tumors they need to address and also for them each to calabrate what they thought the dosage and route should be taken. the calculating can take several hours, and is really the longest part of the procedure. Each doctor had to come up with the same exact calculations. In the meantime, after the MRI, there is a piece of headgear that the patient has to wear that gets screwed to the head (the screws do not penetrate the skin, but do leave a mark and can get sore after all is done-my dad had no problem with this. At this hospital the neurologist is the one who puts the headgear on, because if it is wrongly applied it can cause damage to the skull, so a neurologist should be the one who puts on the headgear. the headgear is like a frame and then when the dosages are set another collandar like helmet gets attatched to the headgear, which weighs six pounds. It has holes in it and specially fitted "corks" that close holes not needed, and then the ones needed for the procedure are left opened. There may be alot of getting up and down, depending on the number of mets being treated. Dad was very tired, due to all the up and down and the long day. I know there are different computer programs, the most advanced one allows for almost zero error for any under or over dosing of the radiation. All the dosages of radiation are entered all at once, which makes it more accurate and timely. The only reason for the getting up and down is that the "collandar" that I mentioned may need to be changed to one with different sized holes and calabrations (since dad had 3 tumors it took a couple of different "collanders". The whole thing is very HIGH TECH and very accurate. The nurse in charge of the GK where my dad had it done showed us the machine (it looks like an MRI) and the collandars and explained every detail of how the day would pretty much go. Since dads tumors didn't grow and there were no changes, it made the calculating of the dosages, etc. faster. There are virtually no side effects, some people experience some of the side effects that regular whole brain can cause, but the side effects are much less. I read an article in a medical magazine about a woman that went from California to PA to get GK, she was diagnosed with melanoma, she was an avid runner, but hadn't been able to run due to the symptoms of the brain mets, the DAY AFTER gamma, she ran 5 miles. The GK nurse told my sister about a woman that went to their hospital, she had been bed ridden for weeks, the day after GK she walked out with a cane. I hope this was of some help to you. There are websites online that even show the GK procedure, but I can't get the "film" to run on them, my sister ended up doing it on her computer adn telling me about it. I just would ask if the facility that you use has the latest computer programs for the GK, a private company owns the rights to the technology and the hospital pays for it. And also ask who puts the headgear on, since it gets screwed to the skull and it is a delicate thing-it can cause injury if not applied correctly and is screwed on the wrong spot. Our experience was a very positive one, everyone explained the technique very well, and my dad was facinated by the technology-which helped. He was even told to bring in his favorite music CD, as they play it during the GK in the machine, he didn't have one, so they picked one for him. He slept during the whole procedure! the only anasthetic is a topical one for where the headgear is attatched. If you have any other questions, let me know. I hope I hit all the areas you were looking for. Good luck, I will keep you and your husband in my prayers. Keep us posted. Take care, Deb Quote Link to comment Share on other sites More sharing options...
Guest Barbara T Posted February 4, 2003 Share Posted February 4, 2003 Dear Alyse: I am new on the board. My dx 4/02 was stage 4 NSCLC right lung with brain mets (4). My oc on my first visit immediately sent me the same day to start receiving whole brain radiations ( 14 total) due to extreme edema - I am only 44. He aggressively went after my cancer and in May I had the gamma knife performed at NYU. Went in at 6:30 am, had the gamma knife done and was home by 6:00 pm. Felt so well, I attended 2 meetings that night. Returned to work the following day. So far - 70% reduction on my brain mets and I am going for my next MRI on Monday. On my third chemo-First tried Carbo/Taxol - gave me extreme joint pain and did not reduce the tumor. Second - Taxotere - shrunk tumor slightly but still had back pain due to tumor. In 11/02 was switched to Gemzar and my back pain disappeared, tumor count going down and awaiting my next cat scan. I am currently working f/t, have 3 boys, youngest is 4 and look forward to many more years. Your attitude plays a big part and my motto is "too busy to be sick". We are all in God's hands. Babs Quote Link to comment Share on other sites More sharing options...
mirrell Posted February 5, 2003 Share Posted February 5, 2003 i love it, too busy to be sick!!!!!!!!!!!!!! keep up the good fight babs Quote Link to comment Share on other sites More sharing options...
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