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Whole Brain RAD: Starting- Any Tips from ‘da Pros?

Forums General Melanoma Community Whole Brain RAD: Starting- Any Tips from ‘da Pros?

  • Post
    glewis923
    Participant

      Dear All:   Completed my 2 SRS (NovalisTS) sessions where hopefully 5 brain tumors are now simply compost.  Next Mon. I start a 2 week WBRad. as i have at least 7 more "meaurable" 3mm + tumors and God knows how many microscopic c-cells.   SO…..I have no choice but to WBR.

       

      Dear All:   Completed my 2 SRS (NovalisTS) sessions where hopefully 5 brain tumors are now simply compost.  Next Mon. I start a 2 week WBRad. as i have at least 7 more "meaurable" 3mm + tumors and God knows how many microscopic c-cells.   SO…..I have no choice but to WBR.

       

      Despite a lot of "scare stories", I ain't really skeered a lik, BUT,  I would like any advice on those of you who may be already an official ranking member of the exclusive WBR Club.  Like:  What should I eat,  what to realistically expect, and anything that may be from your 1st hand experience.   I'm pretty tough, triple chemo didn't hardly phase me.  The I-feron was a little rough (Mostly mental i think- it will cure smoking, eating, and anything you may enjoy!), but i perservered.  If i loose a few more brain cells, I'll just hav't to resign from Mensa !   ha…ho…weep.

      Thanks for any advice!   Love All,  Grady & Family.

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        NicOz
        Participant

          Oh I think you'll still be a MENSA member! :P

          I don't have any first hand experience with WBR that I have to offer advice with. I have just gone to the archives and done a search for "WBR" and from what I see there, fatigue, some nausea and sometimes sleep difficultty (from those much adored steroids- ugh! 3:30 am here, but I managed 6 hours so am chuffed!)

          Sharyn has undergone WBR, but I know she's been flat out getting things sorted for her latest treatments, so not sure if she's around at the moment.

          I used to be terrified at the thought of WBR, but no longer feel that way. It was the late-onset dementia possibility that used to scare me, but really? That's more of a concern for older patients. The younger ones such as yourself are not nearly so often affected by it. Mostly I remember Kathi telling me about the wig she got and that the hair still hadn't started growing back a month later :)

          I've been in email contact with some who have had it done, and mostly it was fatigue that they had the most issue with.

          I hope you'll get some firsthand responses soon that will put your mind at rest, and give you some hints and tips to help you along the way. The only experience I have of any relevance is numerous stints on decadron (which they will give you to minimise brain swelling from the radiation) and I'm in the process of weaning off that at the moment, so all you'll hear from me about that is much complaining and the odd expletive, which you can probably do without!

          Check out the archives and you'll find heaps there about it, but I have no doubt that you'll get out the other side and and think "Well that was better than I thought", then continue to get on here and stir me :P You may have to get that crown resized, though. To wig or not to wig- that is the question!

          Go get those suckers and fry them to a crisp! Are they giving you and radiation sensitising medication as well? (Showing my ignorance here) Meanwhile I have full journal article access to hundreds of journals, so if you need anything specifically looked up for you, drop me a line and I'll get on it for you asap.

          Much love, and thinking of you

          Nic

          xxx

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          NicOz
          Participant

            Oh I think you'll still be a MENSA member! :P

            I don't have any first hand experience with WBR that I have to offer advice with. I have just gone to the archives and done a search for "WBR" and from what I see there, fatigue, some nausea and sometimes sleep difficultty (from those much adored steroids- ugh! 3:30 am here, but I managed 6 hours so am chuffed!)

            Sharyn has undergone WBR, but I know she's been flat out getting things sorted for her latest treatments, so not sure if she's around at the moment.

            I used to be terrified at the thought of WBR, but no longer feel that way. It was the late-onset dementia possibility that used to scare me, but really? That's more of a concern for older patients. The younger ones such as yourself are not nearly so often affected by it. Mostly I remember Kathi telling me about the wig she got and that the hair still hadn't started growing back a month later :)

            I've been in email contact with some who have had it done, and mostly it was fatigue that they had the most issue with.

            I hope you'll get some firsthand responses soon that will put your mind at rest, and give you some hints and tips to help you along the way. The only experience I have of any relevance is numerous stints on decadron (which they will give you to minimise brain swelling from the radiation) and I'm in the process of weaning off that at the moment, so all you'll hear from me about that is much complaining and the odd expletive, which you can probably do without!

            Check out the archives and you'll find heaps there about it, but I have no doubt that you'll get out the other side and and think "Well that was better than I thought", then continue to get on here and stir me :P You may have to get that crown resized, though. To wig or not to wig- that is the question!

            Go get those suckers and fry them to a crisp! Are they giving you and radiation sensitising medication as well? (Showing my ignorance here) Meanwhile I have full journal article access to hundreds of journals, so if you need anything specifically looked up for you, drop me a line and I'll get on it for you asap.

            Much love, and thinking of you

            Nic

            xxx

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            Linda J
            Participant
              Hi
              I just finished 5 rounds of wbr a couple of weeks ago. My biggest issue was fatigue. The other issue I’m having is weening off the steroids. The steroids helped a lot during radiation but now I’m having nausea as I’m trying to get off of the – I’m also on carbo/taxel right now so that isn’t helping.
              Generally, the fatigue is the worst. I’m 31 so I’m hoping I don’t lose my marbles yet :-) I haven’t noticed any weird brain things but my husband might argue that!
              Best of luck to you – it is a little unnerving having the face mask bolted down to the table but the entire zapping takes less than 10 mins so hopefully you don’t find it too claustrophobic.
              Linda J

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              Linda J
              Participant
                Hi
                I just finished 5 rounds of wbr a couple of weeks ago. My biggest issue was fatigue. The other issue I’m having is weening off the steroids. The steroids helped a lot during radiation but now I’m having nausea as I’m trying to get off of the – I’m also on carbo/taxel right now so that isn’t helping.
                Generally, the fatigue is the worst. I’m 31 so I’m hoping I don’t lose my marbles yet :-) I haven’t noticed any weird brain things but my husband might argue that!
                Best of luck to you – it is a little unnerving having the face mask bolted down to the table but the entire zapping takes less than 10 mins so hopefully you don’t find it too claustrophobic.
                Linda J

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                  glewis923
                  Participant

                    Nic & Linda J:     Thanks.  Already on the Decadron 4mg x 4/day, but have already weened back to under 2 /day 'cause Dr. said initial swell fear is over.  He has put me on 2  500mg(i think) Kepra for possible ensueing seizures.  Not sure why he'd say OK to cut one, but must take other?     …..but, I'm happy not being as 'roided out for the last couple of daze.

                    Linda J:  Just wondering, I was due for another carbo/ Taxol round yesterday, but my local Onc. wouldn't do it since i had the WBR coming up and WBR next 2 weeks.  Does this make sense?  I should have demanded my poison I guess?!!!!!

                    I'm soooooooo  sick of Drs. afraid to sock it to me.   If i hear them say one more time "….this might be too toxic / might not be good idea /  etc…."   I might just go postal.   Sorry,  just had to say it.  I feel like Drs. are scared to YOUR death to actually give you proper, radical treatment on a disease that gonna kill you deader than a doornail in a matter of mths. if they don't.   So frustrating.   Damn trial lawyers. 

                    OK,….breath.   Linda:  You named a pet after me?  (Grady)  Is it a cute puppy-dog or an iguana lizard?  Ha ..ha   Really, what is it?         Nic:       Don't worry about MENSA, I turned 'em down 27 yrs ago;  it was all too puzzling and pretentious, and I would never wanna be accused of that !!

                     

                    Thanks for listening and enduring me and this F-ing MM thing,  but were having a little fun, I just need a little more faith perhaps.

                    Love,  Grady.

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                    glewis923
                    Participant

                      Nic & Linda J:     Thanks.  Already on the Decadron 4mg x 4/day, but have already weened back to under 2 /day 'cause Dr. said initial swell fear is over.  He has put me on 2  500mg(i think) Kepra for possible ensueing seizures.  Not sure why he'd say OK to cut one, but must take other?     …..but, I'm happy not being as 'roided out for the last couple of daze.

                      Linda J:  Just wondering, I was due for another carbo/ Taxol round yesterday, but my local Onc. wouldn't do it since i had the WBR coming up and WBR next 2 weeks.  Does this make sense?  I should have demanded my poison I guess?!!!!!

                      I'm soooooooo  sick of Drs. afraid to sock it to me.   If i hear them say one more time "….this might be too toxic / might not be good idea /  etc…."   I might just go postal.   Sorry,  just had to say it.  I feel like Drs. are scared to YOUR death to actually give you proper, radical treatment on a disease that gonna kill you deader than a doornail in a matter of mths. if they don't.   So frustrating.   Damn trial lawyers. 

                      OK,….breath.   Linda:  You named a pet after me?  (Grady)  Is it a cute puppy-dog or an iguana lizard?  Ha ..ha   Really, what is it?         Nic:       Don't worry about MENSA, I turned 'em down 27 yrs ago;  it was all too puzzling and pretentious, and I would never wanna be accused of that !!

                       

                      Thanks for listening and enduring me and this F-ing MM thing,  but were having a little fun, I just need a little more faith perhaps.

                      Love,  Grady.

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