Bill Posted December 16, 2005 Share Posted December 16, 2005 I don't plan on scheduling any doctor's appointments re: this matter. If symptoms get much worse I will bring her to ER with her latest brain MRI films and rad report. They can notify her doctors then maybe somebody will be forced to take action. Based on input from those of you familiar with postradiation ( wbr ) leukoencephalopathy it looks like I should be asking about HBOT. My wife can no longer walk without losing her balance. Two days ago she was fine, even walking around the house w/o her cane. Now, w/o her cane she starts stumbling and falls after a couple of steps. Also, her S/T memory ( information recall ) is almost totally gone. IMO Sundrop1964 is right re: tx attitude, not just with wbr adverse effects but generally speaking, about late stage cancer patients. Many of you have spoke about the stigma of lung cancer patients because of it's association with smoking. I've observed directly and indirectly throughout my wife's experience a stigma or attitude of indifference to tx with late stage cancer patients, also. A far too common ' throw in the towel and make 'em comfortable ' mentality. Quote Link to comment Share on other sites More sharing options...
Snowflake Posted December 16, 2005 Share Posted December 16, 2005 I'm sorry, Bill. In the Pollyanna part of my brain, I would like to think the loss of balance has to do with an inner ear disturbance... ...as for throwing in the towel, Bill, you are now her voice. Keep speaking up, maybe you can find a doctor who'll listen. My thoughts are with you, Becky Quote Link to comment Share on other sites More sharing options...
Treebywater Posted December 16, 2005 Share Posted December 16, 2005 Bill, I agree with you about the late-stage stigma. But I am so glad your wife has you to speak for her, and to get the doctor's to listen. Praying for you both. Quote Link to comment Share on other sites More sharing options...
TAnn Posted December 16, 2005 Share Posted December 16, 2005 Bill, Didn't you say your wife is NED? There should be no throwing in the towel now. All the fighting and suffering and finally getting NED only to have to face the damaging effects of treatment. I saw that Lori's mom may have surgery for her necrosis. I know you Bill, and I know your voice will be heard. Going through the ER may be the only way to get your doctors attention. Whatever it takes..... TAnn Quote Link to comment Share on other sites More sharing options...
Kasey Posted December 16, 2005 Share Posted December 16, 2005 (((Bill))), I DO hope you don't mind the hug I think you desperately need about now. I agree with the previous posts completely...each one. I am devastated too, by LC treatment mentality. Please keep speaking in your wife's behalf. We are there with you in spirit, you KNOW that. Kasey Quote Link to comment Share on other sites More sharing options...
nonni Posted December 16, 2005 Share Posted December 16, 2005 Geezz Bill...I don't know what to say except how sorry I am that you and your wife are going thru some hard times now...I think you have the right idea thou...if things haven't been going well anyway...why not wait for further symptoms and take her to the ER with her films and reports and MAKE someone listen....but please please...no 'throwing in the towel" thou...prayers for you and your wife... Quote Link to comment Share on other sites More sharing options...
carolhg Posted December 16, 2005 Share Posted December 16, 2005 Bill your love for your wife will give you the strength to fight for her as you know she would for you if the situation were reversed. Please know how sorry I am that this awful thing has happened to the two of you. There has got to be a doctor there who will listen and do something. Quote Link to comment Share on other sites More sharing options...
Sundrop1964 Posted December 17, 2005 Share Posted December 17, 2005 I don't think Bill is wanting to throw in the towel.. he is just deeply saddened and frustrated. He is watching the person he loves deteriorate before his very eyes.. and it is getting progressively worse very quickly. He is noticing mental and neurological regression on almost a daily basis. Oh, how I feel for him.. I've lived through it with my father and know how all too well exactly how he feels. My dad was also NED.. but at what price??? The doctors don't really want to listen or have anybody question their protocols. They quickly brush over the whole thing and change the subject. Seriously. And they certainly will rarely if ever question or comment on another medical professionals treatment plan. Hang in there Bill. Quote Link to comment Share on other sites More sharing options...
carolhg Posted December 17, 2005 Share Posted December 17, 2005 Thank you Sundrop. I am so very sorry. I will pay that God gives Bill strength for what he has to endure. Prayers Quote Link to comment Share on other sites More sharing options...
jcawork Posted December 17, 2005 Share Posted December 17, 2005 Bi,, Have her ears been checked? I was also very off balance well after it was over and the WBR had nuked my inner ears. Steroid drops and it cleared it up. They did not hurt. The WBR is shot through both ears. Jen Quote Link to comment Share on other sites More sharing options...
Jyoung20 Posted December 17, 2005 Share Posted December 17, 2005 Hang in there Bill and God Bless You Two!!! Jamie Quote Link to comment Share on other sites More sharing options...
Sundrop1964 Posted December 18, 2005 Share Posted December 18, 2005 The damage caused by WBR are delayed by 6 months - two years. You think everything is fine.. the WBR wasn't bad at all and everything is going to be all right.. then the symtoms begin and escalate rather quickly. Quote Link to comment Share on other sites More sharing options...
Bill Posted December 18, 2005 Author Share Posted December 18, 2005 The damage caused by WBR are delayed by 6 months - two years. You think everything is fine.. the WBR wasn't bad at all and everything is going to be all right.. then the symtoms begin and escalate rather quickly. This summarizes my message exactly. Add to that alot of foot dragging by some of the docs and HCPs ( late stage tx attitude ~ sort of reminds me of triage ). Situations like this can quickly turn into a meltdown. I'm currently watching and waiting. As previously stated, I most likely won't waste time scheduling appointments with any of her docs. When I've seen enough I will bring her directly to the ER and they can contact her docs and force them into immediate action. We had been looking towards her rad onc but given the fact that he performed the wbr and his surprisingly defensive attitude, and lack of concern, I'm thinking that I should insist that her neurosurgeon get involved. Once again, my poor wife is the proverbial hot potato. Nobody wants to get stuck with her. If I understand GDPawel and the rest of you folks that are knowledgeable about this terrible condition ( postradiation leukoencephalopathy ) HBOT is the tx of choice ? Please correct me if this isn't so or if there are other options. As some of you know, some of these docs don't know mud about some of these complications and we, the patient or caregiver, need to be ready to offer up tx recommendations, etc. Any additional input that can be offered to help me better prepare once I have seen enough and take action would be greatly appreciated. Thanks much. Quote Link to comment Share on other sites More sharing options...
Sundrop1964 Posted December 18, 2005 Share Posted December 18, 2005 Bill, Interesting about what you commented regarding nobody wanting to get stuck with your wife. it is so true. I kept getting the feeling the doctors simply wished my dad would disappear.. Quote Link to comment Share on other sites More sharing options...
Don M Posted December 18, 2005 Share Posted December 18, 2005 Bill: I am very sorry that you and your wife are going through this now. Ihope that some treatment can be found to help your wife. Don M Quote Link to comment Share on other sites More sharing options...
Don Wood Posted December 18, 2005 Share Posted December 18, 2005 Very sad indeed. My heart goes out to you two. Don Quote Link to comment Share on other sites More sharing options...
shineladysue Posted December 18, 2005 Share Posted December 18, 2005 Bill, I wish I had some words of wisdom or encouragement. I don't know anything about WBR etc., but one thing I do know... your wife is so blessed to have you. May God be with you both in the days ahead. Sue Quote Link to comment Share on other sites More sharing options...
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