TBone Posted February 21, 2004 Share Posted February 21, 2004 Hi all, I just wanted to post my experience with whole brain radiation so as to compare it with those of others and hopefully provide some info for those that may be faced with it in the future. I completed 15 rounds of WBR on 2/3/04.I had no side effects whatsoever until the 10th treatment.On that day I lost all my hair.Within a couple of days I developed blisters on my ears and peeling on my forehead but controlled it with a cream and it was not bad.I felt fine.Approximately 7 days afer the last treatment I started feeling terrible.I lost appetite,developed what seems like a sinus problem but will not respond much to meds.Feels like I have fluid on my ears all the time.This causes headaches.I have no sense of taste.When I lean over it seems like a river is rushing to my head.None of these symptoms showed up until a full week after the last treatment.Up to that point I had felt fine. I think that these bad symptoms are slowly disappearing as some days I wake up feeling fine.Instead of good days and bad days,though,I have a good few hours and then can start to feel bad real quick.I will go sleep for a couple of hours and usually wake up feeling better.I never know from day to day what I will feel like when I wake up.I did not develop the fatique until a week after the last treatment either.Does anyone else have the good hours/bad hours syndrome? I went to radiation onc Thursday and he marked my chest to begin a series of 18 radiation treatments to my chest that will begin on Monday.The tumor there is interfering with my voice.After that I will begin some sort of chemo. I will get a scan to check on the effectiveness of the WBR on 3/1/04.I sure hope it did something.I am praying that it did a whole lot.Thanks for all your prayers and encouragement.Praying for us all I am.TBone Quote Link to comment Share on other sites More sharing options...
Snowflake Posted February 21, 2004 Share Posted February 21, 2004 TBone, Thanks for sharing your story with the "held over side effects". I had 35 sessions of chest radiation (not near my vocal cords, more like cleavage baking). About halfway through, there were some minor side effects, a little difficulty in swallowing and some fatigue - I just felt I might need a nap and sometimes even took one... The last week and a half I had some extreme trouble swallowing. I could swallow soft solids that had been chewed (Double Stuf Oreos) but the MILK chaser was a killer! Seems that liquid is a bigger swallow than the spit-soaked solids that I tried to take small bits of down my throat. My radiologist suggested a liquid aloe with the beginning irritation. I drank a shot about three times a day. (George's 100% Aloe Vera Fractionally Distilled Liquid from Aloe Vera Leaves) There is no taste to the aloe vera and it soothes the throat. When the irritation got worse, the radiologist wrote a prescription for Carafax (and boy, is THAT stuff NASTY!). With the Carafax, I took a shot of the aloe to soothe and then the Carafax to coat the throat. The swallowing pain continued after the treatment, getting better by a smidgeon a day.. There was fatigue with the radiation that carried on for some time...or from the depression...or from the surgery....or from... Well, you get the idea - EVERYTHING seems to lead to fatigue. So, sleep when you need to, makes up for all those sleepless nights experienced upon your diagnosis.... Take care, TBone! Becky Quote Link to comment Share on other sites More sharing options...
MO_Sugar Posted February 21, 2004 Share Posted February 21, 2004 Sounds a lot like the effects I had from the PCI treatments I received I still have a "full" feeling in my ears at times and I have JUST started to get hair back. The rest of the effects have mostly worn off but it took 3 months. Good Luck and God Bless MO Quote Link to comment Share on other sites More sharing options...
Carleen Posted February 22, 2004 Share Posted February 22, 2004 Tbone, I continue to pray that this WBR has terrific benefits to you. I hope these harsh side effects will lessen and go away soon. But I thank you for sharing your story. These treatments can be scary and people want to know what to expect to alleviate some of their anxiety. They need to know their symptoms are commonly shared. Take care and God bless you. Carleen Quote Link to comment Share on other sites More sharing options...
luvmydog2 Posted February 22, 2004 Share Posted February 22, 2004 TBone, My story on radiation is about the same as Becky's. I did not do the Aloe bit. I can relate to the nasty Carafax. I threw mine away. While in the hospital the doctor gave me a GI Coctail every 4 hours. Boy did it do the trick. Not sure what was in it tho. I have been off radiation now for 9 months and still have the fatique from radiation. Only occasionaly tho and it is going away. I do however still have burning in my back where I had radiation. Good Luck and take care. Bruce Quote Link to comment Share on other sites More sharing options...
Roseymac Posted February 22, 2004 Share Posted February 22, 2004 TBone, I agree with Carleen about posting everything to help someone going through the same thing. The last week of chest radiation my Husband started having trouble swallowing well actually it was after the swallow it seemed to hurt and feel like something was stuck there. The Dr.s said it wasn't from radiation or Chemo (LOL) they weren't near the esophagus and they never heard of that. He was starting to think something new was growing in the area. Dr.s were going to do another Bronc. Well low and behold we started asking here and seems a lot of folks had the same problem from radiation. But knowing this really eased his mind. It took a good 3 months to go away, they prescribed this stuff called Magic Mouthwash, well he said he would rather deal with the pain. Kept wanting me to taste it (Yick not me. ) We have learned more here and when something would pop up knowing that this is pretty common sure put our minds at ease. Rosemary Quote Link to comment Share on other sites More sharing options...
Z_Pacific Posted February 22, 2004 Share Posted February 22, 2004 HI Tbone, Sorry to hear about how you’re feeling. Take your hair loss as a good sign. I have not been burdened with the stuff for a number of years now and I can assure you that it is a blessing to be relieved of such unmanageable, unsightly and complex appendages. Not having to hear about “bad hair” days or how I look after walking out of a wind tunnel liberates oneself of any follicular self-conciseness. Personal grooming is improved by trading in that old comb for a good scrub brush and think how much electricity you will save when you hang up that blow-dryer. Think about the bright side of things! God Bless, Howard Quote Link to comment Share on other sites More sharing options...
paddy Posted February 23, 2004 Share Posted February 23, 2004 Hi Tbone, Just wanted you to know that you and your family are in my thoughts and prayers, it's such a tough thing you are going through but you seem to doing it with a wonderful attitude. I hope your radiation will be successful and you will soon start to feel better. Paddy Quote Link to comment Share on other sites More sharing options...
TBone Posted February 23, 2004 Author Share Posted February 23, 2004 Hi, Thanks for the replies.I feel that I know a little more of what to expect from the chest radiation now. Good to hear from you Howard.I know you were having a hard time the last time you posted.I hope things are better for you and pray that they stay better.I was never bothered by the hair loss.I have been mostly bald since I was 25 and it never phased me.I wasn't one of those to let the sides grow out and comb it all the way over my head.I have seen some doozies that tried that.I like the zero maintenance too.Take care.TBone Quote Link to comment Share on other sites More sharing options...
BeckyCW Posted February 23, 2004 Share Posted February 23, 2004 TBone, I do hope your symptoms improve daily and that you feel better soon. And Howard, it was great to hear from you! Neither of you seems to have lost your incredible attitude, and my hat is off to you both. (Yes, there's hair under MY hat... and for that we should all be thankful... I don't think my bare noggin would be nearly as attractive as both of yours.) Sending up prayers for both of you, and wishing you more comfortable hours, days, nights, weeks, months, years... BeckyCW Quote Link to comment Share on other sites More sharing options...
norme Posted February 24, 2004 Share Posted February 24, 2004 T-Bone, What you have just recorded is going to help others so much. My Buddy only had ten treatment of WHR and those really did him in for it took away his complete appetite for a good month as I recall. All the radiation treatments he had did this to him each time. He never spoke of anything else but I think it also took away some of his short term memory for awhile and maybe made his hearing a little worse. After his body got settled, he was okay except for the hearing. Even to the end, the three tumors he had in the brain never came back. I have a good feeling about WHR. I think it does wonders. YOu are going to beat this thing. Just hang in and let that lovely family help you through this. I sure would love to adopt a few of them right now. Family is a beautiful thing to have at a time like this and matter of fact, all the time. Quote Link to comment Share on other sites More sharing options...
bobmc Posted February 24, 2004 Share Posted February 24, 2004 Hi Tbone; Sorry I'm late on this!!, But I've been going through pretty much the same thing then some. , Was really happy to finish up the 20 th treatment and then hell broke lose. I got real sick to my stomach on that last day, and spent the next 4 days being sick and fatigued. Could hardly move at times and most of what I tried to eat came back up. I was told it would take 7 to 10 days to start feeling better. It 's now 12 days and yea feeling better but it's God auwful slow. Also, alot of problems staying focused on something, hav'nt been on the net as aresult, and I get a very sick feeling when I try to do things. I just started having some bleeding problems, I know not good, beginning yesterday I started spitting up a bit of blood. I see the doc on wed.but also could be digestive or sinus issue. I am now totally off the decadron but I do have liquid morphine which I use only occasionally now but it does help. Anyway T, it really does suck, but then for the grace of God we do carry on!! I keep tellin myself, 2 feet above the ground is a good thing and it''s good to be a SURVIVOR today!!!, Can get depressing at times. send me a PM if ya want details or have questions, but your not alone. God bless and be well! Bobmc- NSCLC- stageIIB- left pneumonectomy- 5/2/01 MRI's taken 12/18/03 - 2 brain mets found- named em Frick & Frack PET taken 1/5 - hot spot in mediastinum May be cancer?? "Absolutely insist on enjoying life today!" Quote Link to comment Share on other sites More sharing options...
Angie Daughter of Bill Posted February 24, 2004 Share Posted February 24, 2004 Wishing you all the best. I hope your symptoms continue to decrease each day. Good luck with the radiation! God bless! Quote Link to comment Share on other sites More sharing options...
kimblanchard Posted February 24, 2004 Share Posted February 24, 2004 I only had radiation to the lower lobe R lung and did fine dring the 31 treatments but about 10 days later lost all appetite and ws so tired I could hardly push myself to do anything. That lasted 2 or 3 weeks and then got better. Hope you are feeling better very soon. Prayers that the radiation did the trick. God bless Quote Link to comment Share on other sites More sharing options...
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