 |
 | Home | Contact Us | FAQ | Search & Site Map | Link to Us |
 | Sign In | Join | Other 45 Sites in Network |
Medical Forum / Diseases and Disorders / Cancer / June 2004Whole brain radiation fear
I've been fighting BC with bone mets for 5+ years, and for the most part, have done okay on various treatments. I've lurked here and in the BC support area for quite awhile, but this is my first message. I have mets in the liver, both legs, both arms, all up my back, ribs, hand, skull, etc (many of them radiated over the years). Friday, I found out that I have a met in my brain, and they started whole brain radiation today. Needless to say, I'm terrified. If anyone up here has been through this, could you please tell me what I might expect (with the understanding, of course, that everyone is different in how they react to treatment)? How sick am I going to be? Is it going to change who I am? Is it going to be as bad as AC chemo brain? I guess all day the biggest question in my mind has been, is this finally the time to pack it in and give it up? Or is there still a reason to fight this thing? (I must be tired...giving up is usually so foreign to me!) Any advice would be truly appreciated. Thank you. Robin Dear Robin: There is always a _reason_ to fight it, but I think it was Steph who either found or composed a series of questions one should ask before embarking on a treatment. I'm sure someone will re-post that for you. From my perspective, if there is nothing but pain and agony then that might be the time to "pack it in". Sure, where there is life, there is hope --- sometimes the only reason to go on is the hope that maybe tomorrow they will find something to make it better. That is not enough for some people. For others, just seeing the sunrise is enough reason to fight through the darkness. It is all very personal. The issue about whole-brain radiation and the question of what it will do to you... Of course I cannot predict with certainty if or how much it will affect you. My mother in law sees her radiologist tomorrow. Some members of her family are vehemently opposed to her taking this treatment. Some are afraid it might make her blind, or stupid, or something else. My take is that it is her decision. So what if it eventually makes her blind? Blind people have valuable lives too, don't they? What if she is reduced to being "simple"? So what? I have seen downs syndrome folks take sheer unadulterated joy from a bowl of ice cream. I wish I could feel such pure emotion over something like that. Maybe re-learning some things will be amazingly fun. I wish you well. I wish you comfort. I wish you peace of mind. Ron >I've been fighting BC with bone mets for 5+ years, and for the most >part, have done okay on various treatments. I've lurked here and in [quoted text clipped - 20 lines] >Thank you. >Robin Thank you. You're right, of course, about the decision to stop fighting being very personal. I think the terror of the whole thing got to me for a couple of days (my brain's my only decent asset <g>!). But your message is very comforting, and has given me much to think about (in a good way). Thank you very much. And I wish your mother-in-law much good luck with her treatment! Robin > Dear Robin: > [quoted text clipped - 27 lines] > > Ron Hi Robin: How's it going for you? Regards, Ron >Dear Robin: > [quoted text clipped - 52 lines] >>Thank you. >>Robin > Hi Robin: > [quoted text clipped - 3 lines] > > Ron Going okay, thanks. Had a bit of a setback this week trying to get off the decadron (support drug for brain radiation). Ended up with some brain swelling that felt like really bad flu for a week. But finally figured out what was going on, and things are getting better. Otherwise, just soldiering on <g>. How are you these days? Robin > Had a bit of a setback this week trying to get > off the decadron (support drug for brain radiation). I had some trouble getting off the stuff too. They told me it was to prevent brain swelling. Had to go back on for a week while I moved. Then spent several days feeling miserable while I de-toxed. Decadron (dexamethasone) is some hard stuff to stop. Hope you made it off ok. My hair is still coming back after the whole brain radiation. Looks like it will be patchey. It took a couple of months, but it is slowly returning. Where are you in the reatment? You should be about through with the radiation by now  SignatureBob In Carmel, CA > I had some trouble getting off the stuff too. They told me it was to > prevent brain swelling. Had to go back on for a week while I moved. [quoted text clipped - 7 lines] > Where are you in the reatment? You should be about through with the > radiation by now The doctor said that brain swellng is why I'm having problems getting off the danged stuff. This was my third attempt to get off of it, so at this point, I don't know what I'm going to do. Stay on it, I guess, for now. But I do hate decadron, and would very much like to stop it comletely. Just don't know how to safely do that. The brain radiation is done, so is the arm radiation that followed. So no more radiation necessary at this point (that I'm aware of). Now I'm back to trying to heal up and get my blood counts high enough to go back on some kind of chemo. It's always something <g>. No sign of hair, yet, and I keep hoping it'll show up. A small patch is coming back that was gone after neck radiation I had done earlier, so I can see how slow and fine the new hair is going to be for awhile. It's a real good thing I collect baseball caps--going to need them for quite awhile <g>! Robin > The doctor said that brain swellng is why I'm having problems getting > off the danged stuff. This was my third attempt to get off of it, so > at this point, I don't know what I'm going to do. Stay on it, I > guess, for now. But I do hate decadron, and would very much like to > stop it comletely. Just don't know how to safely do that. My method: First week take 1/2 regular dose. The first few days were the hardest. Second week 1/2 dose every other day Third week off the stuff. You can extend as you need to. the idea is to taper off SignatureBob In Carmel, CA > > I had some trouble getting off the stuff too. They told me it was to > > prevent brain swelling. Had to go back on for a week while I moved. [quoted text clipped - 25 lines] > > Robin Take it slowly coming off the Dex., my understanding is that it should be done very very gradually. When we tried getting my husband off it (he had a GBM4) one less little tablet used to cause a headache. You can get tablets that come in 1/2 mg rather than the standard 2 mg. If you have problems my advice would be to leave it for a couple of weeks and then try again (do bear in mind that I am not a doctor, I was just a carer though). And the hair comes back just fine!! Keep up the battle boys. Hugs Alayne Bob and Alayne, Thanks--you've both given me some good ideas how to taper even more gradually than I was doing. I thought (and the doctor said) that 1mg was such a small dose that it shouldn't make any difference at all...but obviously, it did with me. So I'll try tapering the 1mg down to every other day when the doctor says it's safe to try again. BTW, I was tapering this stuff down much slower than the doctor thought necessary, just because I kept hitting these awful brick walls! Robin > Bob and Alayne, > [quoted text clipped - 9 lines] > > Robin I wouldn't reduce the dose any faster than every 3-4 days and if you are having trouble then only reduce by 0.5mg. It is usually quite quick and easy to get down to about 2-4mg/day of dex but then it can become more difficult. At least part of the reason is the adrenal glands produce about 2mg steroid /day and when you take dex in excess of this they just sto producing - part of the negative feed back mechanism. You need the 2mg to survive so until the adrenals kick in again you need the pills but as long as you take the pills they will not manufacture. The longer you have been on dex the harder it is to reduce the dose past this threshold. There are some people who never can get below of a particular dose because the symptoms return. For these people they have to learn to live with the side effects as long as the benefits outweigh them. MIKE MIKE > I wouldn't reduce the dose any faster than every 3-4 days and if you are > having trouble then only reduce by 0.5mg. [quoted text clipped - 10 lines] > side effects as long as the benefits outweigh them. > MIKE Actually, I've been reducing far slower than even that. I was down to 1mg/day (smaller than the doc recommended) before dropping it entirely, and after having been on that dose for a week, I still had this awful reaction when I went off it completely. It does sound from what you say that maybe I just have to give my adrenals more time to catch up, so hopefully they will actually do that. I'm back up to 2mg/day, per doctor's orders, and feeling barely human after 6 days at this dose. Not fun. I sure hope I'm not one of those people who can never get off this stuff! Hopefully the good suggestions up here about how to taper off even slower than I was doing will help. Thanks. Robin > BTW, I was tapering this stuff down much slower than the doctor > thought necessary, just because I kept hitting these awful brick > walls! The Dr. doesn't live in your skin. Get off at your own pace. You know what your body needs. The brick wall will get softer and softer. The first few days at a new level are the worst. SignatureBob In Carmel, CA > > BTW, I was tapering this stuff down much slower than the doctor > > thought necessary, just because I kept hitting these awful brick [quoted text clipped - 3 lines] > what your body needs. The brick wall will get softer and softer. The > first few days at a new level are the worst. The weird thing is that I can go down to 1mg/day and be fine. But stop that, and I become sick as a dog (completely non-functional, can't keep any food down at all) and it just doesn't ever get better...at least, not in the week and a half that I've given it to get better. The brick wall stays pretty danged hard. I understand detoxing and allowing myself to be sick for awhile to get off something. But this...this, I just don't understand. So anyway, since I do need to keep some food down to stay even reasonably healthy, I guess I'm trapped for the time being into staying on the low dose of the awful stuff. But it's going to take a lot to talk me into ever taking it again for any reason in the future! Thanks. Robin > > > BTW, I was tapering this stuff down much slower than the doctor > > > thought necessary, just because I kept hitting these awful brick [quoted text clipped - 18 lines] > Thanks. > Robin Just out of curiosity, what do you find so problematic with Dexamethasone?? I realise that each and everyone of us is completely different, but when my husband was taking it, the side affects were greatly outweighed by the benefits. Just curious. Hugs Alayne > > Bob Allison <bob@null.cam> wrote in message > news:<bob-67E671.20502422062004@news.sf.sbcglobal.net>... [quoted text clipped - 9 lines] > > Alayne I hate the hyped up feeling and the "fat face" effect. And those are just the things that I know are going on. I hate being on a medication that's causing who knows what behind the scenes. I know a few of the things that it does to your system and although most people would figure it's worth the trade, I don't like it. It's just a personal problem I have with being on drugs of any sort (yeah, I know, I sure picked the wrong disease to get, didn't I?). I guess at this point, I'd have to say that the benefits do far outweight the problems for me, too--I can function and have a life. But I'm hoping that doesn't last much longer that I have to take this stuff in order to have a life. Robin > > Just out of curiosity, what do you find so problematic with Dexamethasone?? > > I realise that each and everyone of us is completely different, but when my [quoted text clipped - 14 lines] > personal problem I have with being on drugs of any sort (yeah, I know, > I sure picked the wrong disease to get, didn't I?). I do understand how you feel about medication. At one point my Tony was taking about 37 pills a day, I will never understand how he managed to swallow them all (the chemo ones in particular), but you do what you need to do when it is your life that you are fighting for. > I guess at this point, I'd have to say that the benefits do far > outweight the problems for me, too--I can function and have a life. > But I'm hoping that doesn't last much longer that I have to take this > stuff in order to have a life. > > Robin Fingers crossed that things go well for you Robin and good luck weaning off the pills. Hugs Alayne > I've been fighting BC with bone mets for 5+ years, and for the most > part, have done okay on various treatments. I've lurked here and in [quoted text clipped - 20 lines] > Thank you. > Robin Whole brain radiation for mets generally has very few side effects, apart from hair loss. But you should ask these questions of your radiation oncologist............ > Whole brain radiation for mets generally has very few side effects, apart > from hair loss. > But you should ask these questions of your radiation oncologist............ Thank you. I did talk at length with my radiation oncologist (who is great) and a couple of the techs (also great), but I guess sometimes I'm afraid that people are telling me what they think I need to hear because they think I'll refuse treatment otherwise. I'm glad to see that I was probably over-panicking a bit there. Please tell me, is it true that the hair loss is permanent? I thought that was so, but then some people are saying it isn't (radiation onc included). If it's true, I guess I'll have to go spring for a decent wig (bald is just not my look) and learn how to pencil in eyebrows (yikes--I have zero talent for applying makeup!). Also, it was mentioned above that you have a list that helps people determine when it might be time to stop treatment. I looked through the messages, but didn't see it. Would you mind terribly reposting it for me? I think it would help a lot. Thank you so much. In lurking up here, I've really come to respect your opinions and advice. Robin > > Whole brain radiation for mets generally has very few side effects, apart > > from hair loss. [quoted text clipped - 16 lines] > the messages, but didn't see it. Would you mind terribly reposting it > for me? I think it would help a lot. Hello Robin, The breast cancer ladies may have tips on where to get wigs, types and fitting issues. I believe one said that her insurance paid for one. I've seen them mention up to a year to grow back but I don't know if that applies to radiation therapy also. They were talking about chemo if I recall. I saw one website where one woman said the radiation oncologist was able to avert affecting the inside part of the eyebrow so that all she had to do was pencil in the rest of the line. That may vary and you'd have to talk to the radiation oncologist about that. Stephs "Questions to ask" are archived from previous posts http://tinyurl.com/vh34 I usually suggest that posters print it up and take time to digest each question and think about it. It's your decision luv. One of the wig threads on the breast cancer newsgroup http://tinyurl.com/26tjh This newsgroup may be helpful but we're the target of much more spam than the breast cancer newsgroup. It's up to you, you can postto either/or/both newsgroups. If you want to access the other newsgroup, it's alt.support.cancer.breast Fine bunch of ladies and gents over there. Hugs Robin J Well, I've been through the hair-loss thing twice now with chemo, so not new to the hat/scarf/wig thing (not that it gets easier, mind). I'll recheck with the resources you list because it has been a couple of years since the last time...maybe there are some better hat sites now for us (I hope)! My hair grows back pretty fast from chemo...sounds like less fast from radiation <sigh>. Thanks for the link to Steph's questions. I'm going to definitely read them carefully and thoughtfully. Robin > Hello Robin, > [quoted text clipped - 21 lines] > Hugs Robin > J > > Whole brain radiation for mets generally has very few side effects, apart > > from hair loss. [quoted text clipped - 5 lines] > because they think I'll refuse treatment otherwise. I'm glad to see > that I was probably over-panicking a bit there. What possible reason could there be for an oncologist not be honest? > Please tell me, is it true that the hair loss is permanent? I thought > that was so, but then some people are saying it isn't (radiation onc > included). If it's true, I guess I'll have to go spring for a decent > wig (bald is just not my look) and learn how to pencil in eyebrows > (yikes--I have zero talent for applying makeup!). Hair regrows fairly well in most patients after brain RT. But it takes a long time... > Also, it was mentioned above that you have a list that helps people > determine when it might be time to stop treatment. I looked through > the messages, but didn't see it. Would you mind terribly reposting it > for me? I think it would help a lot. I think that's my "Reasons to take treatment" J Keeps it somewhere. > Thank you so much. In lurking up here, I've really come to respect > your opinions and advice. > Robin > What possible reason could there be for an oncologist not be honest? You're right, of course, and sometimes "us patients" must seem awfully suspicious and untrusting to our doctors. And my doctors have learned that I'm a bit more suspicious and questioning than most (always politely, of course) <g>. But I love my doctors (I'm very lucky with them) and and trust them. It's just that sometimes I need confirmation. Or maybe just a bit of comfort and reassurance. Not often, but this week, for sure, in humongous, massive amounts. I'll go back to being a rock next week (I have to because I've penned it into my calendar). > Hair regrows fairly well in most patients after brain RT. But it takes a > long time... At least it does come back, then. That, in itself, is good news. The rest is patience, which I was born without, but thank you--good news. > I think that's my "Reasons to take treatment" J Keeps it somewhere. Someone posted the link, so I'll get up there and check it out. Thank you. Robin >> Whole brain radiation for mets generally has very few side effects >> apart from hair loss. >> But you should ask these questions of your radiation oncologist............ > Please tell me, is it true that the hair loss is permanent? I thought > that was so, but then some people are saying it isn't (radiation onc > included). If it's true, I guess I'll have to go spring for a decent > wig (bald is just not my look) and learn how to pencil in eyebrows > (yikes--I have zero talent for applying makeup!). Ask around, you might find some help in this regards. I've seen notices of makeup lessons for cancer pts (at hospitals, maybe at Cancer Care) in the NYC area. I know how you feel about makeup, but a little practice might help. > Ask around, you might find some help in this regards. I've > seen notices of makeup lessons for cancer pts (at hospitals, > maybe at Cancer Care) in the NYC area. I know how you feel > about makeup, but a little practice might help. That's the plan (both practice and finding that class somewhere near here), but at 49, not having conquered that great mystery called makeup yet, let's just say it's going to be interesting. Wish me luck! Robin > I've been fighting BC with bone mets for 5+ years, and for the most > part, have done okay on various treatments. I've lurked here and in [quoted text clipped - 20 lines] > Thank you. > Robin Hello Robin and welcome to alt.support.cancer You've given it a good fight. I would say the time to pack it in is when the side effects of treatments outweigh the benefits of same. Given what Steph replied, I would think you'll continue the treatments. Hopefully you'll get lots of rest and lower expectations of yourself during the course of the treatments. If, at some point, you think you may be feeling depressed, do talk to your doctor about an antidepressant. As to the bones, you'll have to take your cue from the radiation oncologist as to whether more can be done without doing damage. If not and you are in pain, that would be the time to call in palliative care. After this whole brain radiation course of treatment, I would expect that you'll want to focus on quality of life issues and things you've always wanted to do. If you mean the breast cancer newsgroup, that does seem to be what Catharine H decided last Fall. Stay with us if you wish and keep us posted on how you are doing. ( ( ( Robin ) ) ) *hugs* J > Hello Robin and welcome to alt.support.cancer > [quoted text clipped - 16 lines] > ( ( ( Robin ) ) ) *hugs* > J Thank you, J. After getting so much positive input in the last couple of days, I did decide to go with the treatment and see where it leads. But I think you're right--lowered expectations may be the ticket (if I'm not too old to learn a new trick!). The bones don't worry me so much for some reason--breaks, pain, all of those have been addressed fine by my oncologist. It's just when the brain gets involved that I panic. Even when it went into my liver, I shrugged (well, kinda, after I swore some and kicked a tree...not recommended therapy). Now that I've broken the ice and posted, I think I'll stick around up here for awhile. This board has a very warm feeling! Thank you! Robin > If anyone up here has been through this, could you please tell me what > I might expect (with the understanding, of course, that everyone is > different in how they react to treatment)? How sick am I going to be? > Is it going to change who I am? Is it going to be as bad as AC chemo > brain? Robin, I had whole brain radiation last january. The side effects were minimal. Chemo brain would be a good comparison. I have a little less short term memory, but that's it. You shouldn't get sick from this one. My mets were in the ceribellum, and occasionally i will have a little balance problem, but the Doc assures me this too shall pass. In short the, main side effect is perminant loss of hair. Neet mask, huh? Bob > I had whole brain radiation last january. The side effects were > minimal. Chemo brain would be a good comparison. I have a little less [quoted text clipped - 9 lines] > > Bob Thank you so much! No matter how much the docs and techs swear that the damage is minimal, it's always so reassuring to hear the same from someone who has gone through it themselves. So the hair loss is permanent, huh? Guess I'd better find a wig, then <sigh>. Do you by any chance remember about how long it took after treatment to start losing the fatigue (in general terms, of course--weeks, months, not yet)? I already feel like it's making me tired and affecting my balance after 3 days. Only 17 days to go (gonna be crawling in at this rate!). Mask? You got a mask? They just tape my head down with masking tape! I think I'm getting gypped here...<g>. Robin > Do you by any chance remember about how long it took after treatment > to start losing the fatigue (in general terms, of course--weeks, > months, not yet)? I already feel like it's making me tired and > affecting my balance after 3 days. Only 17 days to go (gonna be > crawling in at this rate!). A long time. I still get tired very easily. I've been tired since last June. I was told that it would take months to go away from the first radiation and chemo treatments that ended in late Oct. I never got untired when they hit me again with the second radiation. > Mask? You got a mask? They just tape my head down with masking tape! > I think I'm getting gypped here...<g> Yep, it's a plastic mesh mask that fits over my face and bolts to the table. I couldn't get up if we had an earthquake. (I live in CA) Bob > A long time. I still get tired very easily. I've been tired since last > June. I was told that it would take months to go away from the first [quoted text clipped - 5 lines] > > Bob Not good news about the fatigue, but I'd rather know and be prepared. Guess I'll buy a lot of DVDs and be a couch potato for a few months. Haven't been on any strong chemos in a long time, but I have had multiple radiations and a surgery recently, so I'm sure that won't help (still haven't really recovered from the general anesthetic last month). <lol> I live in CA, too. If the big one hits, I'll be able to rip the masking tape away and bolt in no time (not that I haven't been tempted to do that anyway, the last three days...surprised they haven't put me in one just for fear of chasing my dust as I disappear into the horizon <g>!). Robin |
Reply to this Message |
 Sign In
 Join
 My Latest Posts My Monitored Threads My Blog My Photo Gallery My Profile My Homepage Start New Thread Enable EMail Alerts Rate this Thread
|
©2008 Advenet LLC Privacy Policy - Terms of Use
This website includes both content owned or controlled by Advenet as well as content owned or controlled by third parties.