tjrasMOM Posted July 14, 2009 Share Posted July 14, 2009 My mom just left my house. She drove straight over to my house after her oncologist called her. I went with her for an MRI last week because of constant headaches that had been going on about 3+weeks. It turns out there is something on her brain. From what I've read here, I'm assuming the treatment is radiation. I've also read about this quite a bit, and have gathered that brain mets are pretty common for lung cancer patients. My mom is really scared (who wouldn't be). If you have any experience or information that I could pass on to my mom, we would both greatly appreciate it. Thank you. Tova Quote Link to comment Share on other sites More sharing options...
jean44 Posted July 14, 2009 Share Posted July 14, 2009 Hi Tova, I understand your Mom being scared. Brain mets are scary. My husband (stage IV-nsclc) also just found out he has brain mets. Several small ones throughout his brain. He has started whole brain radiation having four treatments with 10 more to go. While it is common with lung cancer, it still really sucks. He was diagnosed in Sept. 2008 and went all this time with no issues to his brain. This was my greatest fear. So far, the radiation has been far worse than the chemo. He has had 15 chemo treatments with no side effects to speak of but after 3 radiation treatments, he is feeling really ill. We keep our fingers crossed and pray alot. Good luck to your Mom and remember that everyone is different. I know there has been folks that have been through radiation without the issues that Thom is having. We just keep hoping for the best. Jean Quote Link to comment Share on other sites More sharing options...
RandyW Posted July 14, 2009 Share Posted July 14, 2009 Cyberknife Maybe ???? Quote Link to comment Share on other sites More sharing options...
Patti B Posted July 14, 2009 Share Posted July 14, 2009 Tova- I just posted over on your other thread. I will be starting whole brain radiation probably next week. I am scared, too. Hugs - Patti B. Quote Link to comment Share on other sites More sharing options...
Katy66 Posted July 14, 2009 Share Posted July 14, 2009 Hi Tova and Patti, Hubby had brain mets as well but only one in the back of his brain near his optical nerve so cyberknife wasn't an opion. That is how we found out...his eyesight. They immediately stopped chemo after 3 treatments and did radiation to both lung and brain. Don't mean to scare you more than you are because everyone is different but it was TOUGH on him. He hadn't lost his hair with chemo but it all came out from the radiation. His head peeled like a bad sunburn but probably the worst was how it zapped any energy he might have had. I'm not sure if the side effects differ between locations of the brain being radiated. You would think but I'm certainly not an MD (although I think a nursing degree would be pretty easy for me at this point:) Rad stopped the end of May and so far because he is back on chemo we've not had an MRI to see how things are going. His eyesight is still doing better and he isn't having headaches so I'm taking all that as positive.... Good luck to your mother Tova and to you Patti. You have my thoughts and prayers. Quote Link to comment Share on other sites More sharing options...
trishnmiller Posted July 14, 2009 Share Posted July 14, 2009 My husband had 21 tumors removed from his brain by Gamma Knife back in 2005 (4 procedures). There have never been anymore. He will take seizure medication for the rest of his life because of the 21 "dead" spots in his head but this is an acceptable alternative to what might have happened. He also had tumors in his liver and right lung removed with Cyberknife. This is not ordinary protocol by any means and it is hard to convince the docs and insurance company that it is a viable complement to traditional chemotherepy in Stage IV NSLC patients. It is a statistical thing with them and they don't want to throw money out the window. The end result is that they did it our way, he is still cancer free 4 1/2 years out from his original diagnosis and he has not been on chemo of any kind in 3 years. Our path and results are atypical but you can't argue with success. I am praying for you as I do for all of us everyday of my life. Trish Quote Link to comment Share on other sites More sharing options...
jaminkw Posted July 14, 2009 Share Posted July 14, 2009 Tova, what a beautiful picture of you and your mom. I'm sorry I can't offer information but wanted to say I will keep warm healing thoughts in my heart for your mom. Sure, anyone would be scared but many have had success with eliminating brain mets with radiation. Keep us posted. Judy in Key West Quote Link to comment Share on other sites More sharing options...
jaminkw Posted July 14, 2009 Share Posted July 14, 2009 Tova, what a beautiful picture of you and your Mom. Sure anyone would be afraid. I don't have info to offer but do know that people on the site have had success in eliminating brain mets with radiation. Sending many healing thoughts your Mom's way. Keep us posted. Judy in Key West Quote Link to comment Share on other sites More sharing options...
recce101 Posted July 15, 2009 Share Posted July 15, 2009 Hi, Tova. Really sorry to hear about your mom's brain mets, but as you say, they're a rather common consequence of lung cancer. I haven't had any yet, but I know there's something like a 50-50 chance I'll have one or more eventually, and if that happens I'll try to keep in mind what I frequently tell others — that brain mets can be very effectively treated and that the side effects, while not a lot of fun, can be handled. Please keep us posted. Aloha, Ned Quote Link to comment Share on other sites More sharing options...
dchurchi Posted July 15, 2009 Share Posted July 15, 2009 Tova, My husband Alan had one large brain met that was too big for cyberknife so his radiation oncologist zapped it with IMRT. Alan then had WBR. Alan never had another issue with brain mets. All his MRIs were clear. Prayers coming to you and your mom. Quote Link to comment Share on other sites More sharing options...
Nick C Posted July 15, 2009 Share Posted July 15, 2009 My mom had a lot of mets, and so had no choice but to do whole brain radiation (WBR). However if it is A single met and it is small enough there are targetted therapies (Like cyber knife and gamma knife). Here is one thing to look out for. Often, hospitals will say a certain treatment is the best one BECAUSE IT IS THE EQUID THEY HAVE. You will have to be active on this. If the onc says only one therapy will work, ask about the other. If they say won't work, ask why AND ASK IF THEY HAVE THE EQUIP to do it if it was possible. It might mean finding a facility with the alternate equipment and having a consultation with one of their docs. Just a few thoughts. Good luck. Quote Link to comment Share on other sites More sharing options...
Carleen Posted July 15, 2009 Share Posted July 15, 2009 I'm sorry to hear about your mom's mets. Brain mets can be so scary. I know that when my husband was told he had them he freaked out. He said he had a hard time imagining something in there. It was his brain after all. But he did WBR (the doctor at that time recommended that because the mets were small and he said he feared there would be other smaller mets that don't show up on the films yet that if we did targetted therapy would be missed). I just wanted to put out there an alternate experience to what some of the other people have had, that maybe would alleviate some of your mom's fears, and stress the point that every person reacts differently. When Keith had his WBR, he experienced no negative side effects other than the loss of his hair, and a little fatigue. But the fatigue was not severe enough to make him miss any work (he'd go to work right after radiation treatments every day), and he still golfed 3 times a week. The WBR was effective in that the mets did not disappear, but from that point on they never grew or showed any activity or new mets. I will say prayers for you mom and hope that the radiation is gentle on her as well. Quote Link to comment Share on other sites More sharing options...
tjrasMOM Posted July 15, 2009 Author Share Posted July 15, 2009 Thank you everyone. We're still nervous. She has an appointment today with the radiologist at a different hospital than where we usually go. We're going to the first oncology office that she went to. But they're all part of the same oncology group. Thanks Nick for the questions. Our appointment is at 11am this morning. I'm picking Mom up in 45 minutes and I have these questions written down. We've heard from a good friend that his mom had done the Cyberknife locally and it was very effective. So, I'll update with what we find out. Thank you again everyone. Tova Quote Link to comment Share on other sites More sharing options...
Patti B Posted July 15, 2009 Share Posted July 15, 2009 Tova- You are probably home already as my appt was at 10 am. The radiology onc met with me for over an hour. Told me every little thing that will happen and all about side effects. I guess the biggest side effects are fatigue, hair loss, temporary hearing loss and some cognitive thinking loss, esp. short term memory, which hopefully will be temporary. I asked again about gamma knife since Cleveland Clinic offers it and I really am being a big, huge baby about losing my hair again. He explained to me that I have 3 mets, the biggest being only the size of the end of a ballpoint pen. Thats the biggest!!! Since my last MRI in October was clear, they are concerned that others could be starting that are too microscopic to show up yet on a MRI. So I HAVE to have WBR!!! They made my mask and I go for a dry run on Monday and start the actual radiation on Tuesday x 15 sessions!! Feel free to PM me if you have any questions that I may have the answers for. Hugs - Patti B. Quote Link to comment Share on other sites More sharing options...
tjrasMOM Posted July 15, 2009 Author Share Posted July 15, 2009 I'm posting this here as well... HI all, I am typing this out not only for others to read, but also because it's fresh in my mind, I need this reference to come back to in a few days when I forget everything we learned today.... Mom and I went to her appointment today and met her radiologist. What an amazing man. We liked him just as much as we like her oncologist. He explained everything in so much (clear, easy) detail, that we both walked away feeling powerful with our knowledge. He was so good at giving us the positive of treatment, that the "bad news" just slid right in, ever so gently. I mean, we both heard the bad news, but there was hardly time to get upset because of how he moved us to options, treatments, time frames, long-term and short-term side effects...and finally, what he felt was her best option. So, YEAH Dr. Sanha! MRI results: She has multiple brain mets, all over her brain. He does not think her headaches are 100% caused by the brain mets though. He (& her oncologist) believe that the jolts of pain in her head and mild to throbbing headaches are from Avastin. He gave her a prescription for a steroid (Decatron?) to relieve the fluid retention from her head which might be causing the jolts of pain. Treatment options: He discussed Gamma and Cyber knife radiation, explained that we have both machines, but that because of the multiple mets and the fact that it is her whole brain, he feels that we should start with a longer treatment of whole head radiation, have another MRI in a few months, and if anything is left, we then do the Cyberknife or Gamma radiation targeting the specific areas. He said that the whole head radiation will target the cancer cells that are not appearing yet but that could be there. It made perfect sense. Radiation and chemo together: Mom has had her final dose of Taxol and Carbo. But is continuing Avastin. She has had 3 total Avastin infusions. Avastin is not a "chemo" per say, so they are going to check about putting it on hold during the entire radiation treatment plan. Avastin kills the blood supply to the tumor, but it's not necessarily classified as a chemotherapy drug. (We learned so much in this appointment today). They will stop for a bit, but then MIGHT continue to give her Avastin while she is dong the radiation. Options of treatment time: They can give high doses of radiation in a shorter period of time, OR smaller doses over a longer period of time. Example, 10 days of intense radiation vs. 14 days at lower doses. Treatment will be every day, 5 days a week. Appointments last 15-20 minutes. Risks: Shorter treatment period w/ higher doses = Some short term memory loss and concentration problems. Doesn't always get ALL of the brain mets. Hair loss or no growth during radiation. Longer treatment period w/lower doses = Has to postpone chemo. Hair loss or no growth during radiation. Of course, doing the longer treatment time makes more sense, and after talking to her oncologist, Dr. Ranha and Dr. Sawney decided that they wanted her to go 22 days of treatment. So the time is even longer, but it reduces the risk of permanent long term side effects. He wanted to start ASAP. So, he asked if we could start today. I left Mom there while I ran to pick up my kids from my husband and she was fitted today for her whole-head radiation mask. Tomorrow she will receive her first radiation treatment. So, 22 treatments, every day, 5-days-week will take us into early-mid August. Just another part of this rollercoaster, huh? Now,.....we're off to the County Fair. Mom, my 96-year-old grandpa (who has NO health problems) and my 2 daughters. Time to have some fun. =) We will get through this, just as we have gotten through all the other bumps on this journey. Quote Link to comment Share on other sites More sharing options...
Nick C Posted July 16, 2009 Share Posted July 16, 2009 Glad you are comfy with what you heard...sounds like you can be confident that you and Mom are in good hands. Quote Link to comment Share on other sites More sharing options...
ts Posted July 16, 2009 Share Posted July 16, 2009 Wow, you (and Patti) are moving quick. Hope the radiation techs are as nice as the ones I had. Helped that I brought them cookies every week - and kept me from eating them all, while giving me an excuse to bake. Decadron - generic is dexamethasone. It is given to alleviate fluid retention (and help the appetite if I am not mistaken) - but beware - many of us get really hopped up on it - become house cleaning wizards, stay up late, etc, but then have the down side when we go off it. I was only on it for 3 days at a time, then day 4 and 5 were really low. If she is on it for awhile, make sure you have a plan for tapering if needed rather than going cold turkey. Best to all. Quote Link to comment Share on other sites More sharing options...
fillise Posted July 16, 2009 Share Posted July 16, 2009 It certainly is understandable that your mom is scared. There seem to be a lot of positive stories about WBR here, so I hope that brings some reassurance. In the meantime I will pray that it goes well for your mom. Susan Quote Link to comment Share on other sites More sharing options...
Katy66 Posted July 16, 2009 Share Posted July 16, 2009 Glad to hear your Mom is getting started soon with treatment and you too Patti! And I completely agree with the warning on the decadron. Gene kept me up all night while he was on it.....just wanted to talk. Quote Link to comment Share on other sites More sharing options...
fighting4mom Posted July 16, 2009 Share Posted July 16, 2009 Dear Tova, I feel such a connection to your relationship with you Mom - as my Mom and I share such a similar one. I am inpsired by your strength and tenacity and hope to immulate you ... as we begin our battle. I wish that I had more to offer than just my good wishes, virtual support and hugs. Please know that you are in my thoughts and I wish you and your Mom all the best. Blessings, Kimberly[/i] Quote Link to comment Share on other sites More sharing options...
tjrasMOM Posted July 16, 2009 Author Share Posted July 16, 2009 Patty- Your and my mom's treatment sounds very similar. Mom's first radiation appointment is today at 2:30pm. I'm going with her. We had a nice time last night at the county fair. Watched a wonderful hypnotist that had us laughing so hard it hurt. Even 96-yr-old grandpa was in stitches. It's always scary when you first find out something new. Someone once said to me when I first came here that once you have a plan, it gets easier. And that is so true with every obstacle of this course....it's always scary at the beginning of anything new.....but once you can look forward, plan for treatment and find the up side, "it" (fear, emotions, anxiety) is much more manageable. Thank you again for everyone who has been adding information. I've passed on the information about Decadron to Mom. It made so much sense to her because she had been on it before (I didn't realize this) and this is why she couldn't sleep. So, at least she feels a bit more powerful about what she's taking, why she's taking it and how to slowly come off it. Luckily she's only on 2mg right now / twice a day. A few months ago she was on 8mg a day. No wonder she had sleep problems. Tova Quote Link to comment Share on other sites More sharing options...
SandraL Posted July 16, 2009 Share Posted July 16, 2009 Hi Tova. I am so sorry to read the latest about your dear mom. Of course she is scared. You have received lots of good advice here. I haven't experienced brain mets yet (knock on wood) but am sending my well wishes and prayers for successful treatments for your mom. Sandra Quote Link to comment Share on other sites More sharing options...
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