LovesLife Posted July 16, 2009 Share Posted July 16, 2009 I hate reading this update Patti - I am so sorry you keep getting bad news. I hope that the rad onc was able to answer all your questions yesterday and set a plan in motion. You continue to be in my prayers. (((Patti)))) Many hugs, Linda Quote Link to comment Share on other sites More sharing options...
Patti B Posted July 16, 2009 Author Share Posted July 16, 2009 Hi everyone- Met with the radiation onc yesterday and I was there for almost 4 hours!!! Met with him for over an hour and I have to tell you, I think I now know everything there is to know about brain radiation. He was so thorough and kind. Would you believe - LC and breast cancer are the two biggest cancers that love to sneak into your cranium. I knew that already but he told me that the mets from LC and BC together account each year for more brain radiation than brain cancer itself. Interesting, huh??? So everyone, PLEASE MAKE SURE YOU GET MRIS PERIODICALLY!!! I have three mets, the largest being only the size of the hole on the end of a pen!!! I made my case again for gamma knife but as he said, my October MRI was clear and now these so there may be some microscopic mets that are too small to show up yet. So WBR it is, I just have to suck it up that I will be bald again!! He told me all the side effects, etc. They fitted me for my mask (wow, what a creepy feeling) and I do a dry run on Monday and start the actual radiation of Tuesday. Need 15 treatments in total. They tell me I get to keep the mask when I am done so I called up my best friends husband last night who is doing 6 weeks of radiation for vocal chord cancer and told him to keep his and we have a date to go treat-or-tricking with them this Halloween!!! I am also participating in a clinical trial now. Doc said they have been doing radiation for 50 years but noone has ever really done studies as to the cognitive thinking effects of brain radiation - why do some people have them, some for a short time, some longer, etc. So the study is two-fold. I did all these cognitive thinking tests which they will repeat every 8 weeks and then I will also be taking a pill every day. Maybe a placebo or maybe Memantine, which is a FDA approved drug used to help Alzheimers patients. They are hoping that this drug may help with the cognitive dysfunctions in patients receiving radiation treatment to the brain. So.......thats my story and I'm sticking to it. Thanks for all the well wishes - I intend to get through this as well as possible, a little battered, a little beaten down, and a LOT bald!!!! But - won't let the damn cancer win!!!! NEVER!!!!!!! Hugs - Patti B. Quote Link to comment Share on other sites More sharing options...
hopeful? Posted July 16, 2009 Share Posted July 16, 2009 HI Patti, I read your posts all the time and you are always so consistently giving others such positive advice and encouragement that i HOPE i can do the same for you. I am 2 yrs from stage IV diagnosis and about at the same point as you in my treatmnet. On weekly gemczar with some mixed results so far. Though my Onc has not asked me yet I can see it in his eyes. I know their are not many options left and that is difficult to face especially since outside of my severe sob I feel so healthy. I have 3 kids and that is definitely the hardest part of this. Though last year I was able to see my son graduate from high school and just a month ago my daughter graduated from college! I am so grateful that I was able to share in these memories of my children. My youngest has another year before even getting into high school but if I could be here for that it would be another precious moment that I did not anticipate when first diagnosed. In between these events of my children there have been several others that I hoped I could make it through and truly believe that will is what has kept me going so far. My family agrees 100% with this as they know how much I place my children first and the limits I would go for them. So hang in there friend and I hopefully as you watch your son graduate I will be sharing in my daughters completion of here freshman year! April Quote Link to comment Share on other sites More sharing options...
michellep Posted July 16, 2009 Share Posted July 16, 2009 Patti....You are such a strong wonderful woman and I am so very proud of you. I know your going to beat this thing and have many many years of NED in front of you. I could give you advice and say never give up....but then...we all know your a fighter! Keep us updated dear friend and know that your in my thoughts and prayers! Michelle Quote Link to comment Share on other sites More sharing options...
hopeful? Posted July 16, 2009 Share Posted July 16, 2009 HI Patti, I read your posts all the time and you are always so consistently giving others such positive advice and encouragement that i HOPE i can do the same for you. I am 2 yrs from stage IV diagnosis and about at the same point as you in my treatmnet. On weekly gemczar with some mixed results so far. Though my Onc has not asked me yet I can see it in his eyes. I know their are not many options left and that is difficult to face especially since outside of my severe sob I feel so healthy. I have 3 kids and that is definitely the hardest part of this. Though last year I was able to see my son graduate from high school and just a month ago my daughter graduated from college! I am so grateful that I was able to share in these memories of my children. My youngest has another year before even getting into high school but if I could be here for that it would be another precious moment that I did not anticipate when first diagnosed. In between these events of my children there have been several others that I hoped I could make it through and truly believe that will is what has kept me going so far. My family agrees 100% with this as they know how much I place my children first and the limits I would go for them. So hang in there friend and I hopefully as you watch your son graduate I will be sharing in my daughters completion of here freshman year! April Quote Link to comment Share on other sites More sharing options...
SandraL Posted July 16, 2009 Share Posted July 16, 2009 Oh my dear friend Patti. I am so so sorry. Losing my hair again would be freaking me out too. Once is quite enough. I really don't know what else to say right now other than you are always in my prayers. I know you will go into this radiation in the right frame of mind although we all wish you didn't have to go through it. Lots and lots of love and prayers Sandra Quote Link to comment Share on other sites More sharing options...
Maryanne Posted July 17, 2009 Share Posted July 17, 2009 Hi Patti, Here it is a little late but sincere... so sorry for the delay but I did not have computer access until a couple of days ago and trying to catch up. I am so sorry for the results of your scans. It broke my heart to read your post as you were doing so good. I hate the way this monster hides then shows it ugly face. You are an amazing woman with an incredible attitude and determination and I know that is what is helping you to get through this along with the love and support of family and friends. Please know that Iam thinking of you and sending you meditation healing vibes. I know you will keep us updated. Good luck with the WBR and the trial drug. If the drug is also for Alzeimers I could use a dose of that. Take care you lovely lady. Maryanne Quote Link to comment Share on other sites More sharing options...
LovesLife Posted July 17, 2009 Share Posted July 17, 2009 Patti - it sounds as though you are in full battle mode once again - fierce and strong (with some humor added in - definitely was picturing you and your friend at Halloween!). The clinical trial sounds great - they will be keeping an ever watchful eye on you and that's always a good thing. You are young and strong and that is a definite plus. Like the others, I wish you didn't have to go through this. You are such a fighter and an inspiration to so many and now we are here for you dear lady. Good luck on Tuesday Patti. Many hugs, Linda Quote Link to comment Share on other sites More sharing options...
gail Posted July 18, 2009 Share Posted July 18, 2009 Can I say this? Kick *ss! gail Quote Link to comment Share on other sites More sharing options...
jaminkw Posted July 18, 2009 Share Posted July 18, 2009 Damn, damn, damn Patti. I've been off-site due to computer malfunction and had to go through a host of well wishers to find your latest news. Keep your chin up and give those mets a large dose of your attitude. It and your love for your son has gotten you this far. Let it take you through this next battle. I will keep you in my heart and thoughts. Judy in Key West Quote Link to comment Share on other sites More sharing options...
Barbb Posted July 19, 2009 Share Posted July 19, 2009 Patti, This news was a kick in the stomach to me. I am so ANGRY at cancer. My heart is with you and Nick and the rest of your family. I am going to get a pretty plant tomorrow and put it in my "Rod Garden" for you. I think of you when I go out there. Love you friend, Barbb Quote Link to comment Share on other sites More sharing options...
fillise Posted July 20, 2009 Share Posted July 20, 2009 Patti--Carry my prayers with you as you start WBR this week. I know you will handle it beautifully. And haven't you heard?? BALD is BEAUTIFUL! Ok--lame attempt, but think of it as your warrior princess helmet! Susan Quote Link to comment Share on other sites More sharing options...
luvmydad Posted July 21, 2009 Share Posted July 21, 2009 ((((((Patti)))))) Hugs and tons of prayers for you, Nick and hubby!!! Teresa Quote Link to comment Share on other sites More sharing options...
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