bcbcbc Posted October 17, 2005 Share Posted October 17, 2005 Hi again-- Happy to report I'm feeling better each day the farther I get from Alimta. That stuff really hammered me. I tolerated Gemzar/Carboplatin much better. Different strokes for different folks. Or maybe my immune system was stronger back then. Nobody seems to understand how any of this stuff really works. Why should I? I started Tarceva last Tuesday--one 150MG pill daily. So far the only reaction is dry skin and dry mouth. If all this entails is drinking water and using hand cream I'll be a carefree tourist. Tomorrow I have a follow-up appointment with a radiation oncologist I first saw six weeks ago just prior to my Alimta/pneumonia episode. At that time my health was robust. This guy was struck by the fact that it was then a year since diagnosis and I appeared to be in great shape--just a little SOB. So after examination and review of my records, etc. the guy asks me if I ever heard of Prophylactic Irradiation of the Brain. I hadn't. So he explains the course of treatment--8-10 daily treatments on successive days as I recall. Maybe it was 14. Frankly I was more amused than interested in having this dude zap my brain, which seems to be working about as well as it ever did, thank you. Arguably that may not be saying much. So this guy said if I was interested he would talk to my medical onc/treatment team/tumor board to see if this should go forward. I told him to go ahead and check it out--mostly curiosity. BTW since then I have had an MRI of the brain because of headaches I had with the pneumonia. Clear. Nothing there. Before I decide to let this guy or anybody else beam my bean I'm gonna have to see/hear a very persuasive argument with lots of supporting evidence. Have any of you folks out there heard of this treatment or had experience with it? Thanks as always for feedback and support. Quote Link to comment Share on other sites More sharing options...
Kasey Posted October 17, 2005 Share Posted October 17, 2005 Cannot address you question, but so glad you are feeling better!!!! Kasey Quote Link to comment Share on other sites More sharing options...
mamasbabygirl Posted October 17, 2005 Share Posted October 17, 2005 I have not even heard of it, is it the same thing as PCI? I would post something in ask the expert. I am glad to hear you are feeling better. Quote Link to comment Share on other sites More sharing options...
SDianneB Posted October 17, 2005 Share Posted October 17, 2005 Several of us with SCLC had PCI (prophylactic cranial irradiation). I wrote about mine every day in the SCLC forum last December. It wasn't bad, except for the bleepin' mask I had to wear - I am WAY claustrophobic! I learned a lot about it getting articles searching on Goggle. Some choose to have it, some don't. Having brain radiation when there is nothing there is a strange concept, I must admit. Whatever you decide, my best to you. Di Quote Link to comment Share on other sites More sharing options...
Connie B Posted October 17, 2005 Share Posted October 17, 2005 It's pretty common for SCLC patients to have this. I have a couple in my Support Group that did there's 4 and 5 years back and they are doing just fine! It's a low dose of radiation. Just an IN CASE if spreads offer to you! Good luck. Oh, you'll see a LOT of PCI information on the board. It's been talked about a lot! Quote Link to comment Share on other sites More sharing options...
mayos Posted October 17, 2005 Share Posted October 17, 2005 I went through Whole Brain Radiation recently and I'm clearly suffering memory problems from it. I think PCI may be a good concept...since lung cancer will likely wind up in a patient's brain anyway. But deciding on having the procedure warrants alot of research and some deep personal thought. Quote Link to comment Share on other sites More sharing options...
marym Posted October 17, 2005 Share Posted October 17, 2005 I had the stereotactic and at the time this option was presented, they also offered the whole brain. The side effects made me reject the whole brain. I have an brain MRI scheduled for tomorrow and I am so hoping the stereotactic worked and no new mets have developed. I have already decided that whole brain is something I do not want and it will take a lot to convince me otherwise. With no mets - I wouldn't even consider it. Mary Quote Link to comment Share on other sites More sharing options...
bcbcbc Posted October 17, 2005 Author Share Posted October 17, 2005 Thanks for all the feedback. PCI--till now I thought was a circuit board you stuck in the slots of your computer--Peripheral something or other. More research. The amount of time spent checking this stuff out--then still it's a coin toss. Mayos--I gather whole brain radiation is distinct from PCI? Quote Link to comment Share on other sites More sharing options...
Connie B Posted October 17, 2005 Share Posted October 17, 2005 FYI, PCI is NOT the same as Whole Brain Radiation. BIG DIFFERENCE! PCI is mostly PREVENTATIVE radiation. They say it's for JUST IN CASE, because Small Cell LC has a tendency to trail to the brain so they offer PCI to help it not to spread to the brain. Like anything it's not 100% but does work in most cases. My LC Members taht had it, have had no long term problems with there PCI. They did have some short term memory loss, but it all came back for them. They are both still cancer free and one of them is a 6 year survivor and the other is a 5 year survivor. Quote Link to comment Share on other sites More sharing options...
pammie Posted October 18, 2005 Share Posted October 18, 2005 Haven't had radiation but will continue to keep you in my prayers. pammie Quote Link to comment Share on other sites More sharing options...
bunny Posted October 18, 2005 Share Posted October 18, 2005 good luck with all this, bc. are you being treated at the VA still or MSKCC? anyway, I'm sending lots of positive vibes. you're being very conscientous, I know you'llmake the right decision for yourself. xoxo amie Quote Link to comment Share on other sites More sharing options...
Addie Posted October 19, 2005 Share Posted October 19, 2005 In a sense, PCI and WBR are indeed the same. It might be a matter of the dosage of centiGrays.... In my case I had PCI last November. 200 cGrays per day for 13 days. In August of this year...I had a brain full of small mets so underwent more brain radiation...and again, was given the same dose...200 cGrays per day for 13 days. It's all the whole brain radiation I can have. They did irradiate my whole brain....although nobody actually referred to it as WBR...I don't know what else you'd call it. Sometimes docs get creative with terming things anyway (like the day my onc referred to the brain mets as "deposits". I had to laugh. Such a "nice" term for BRAIN TUMORS~!!!! ) Radiating the whole brain is different than gamma or laser knife, where the radiation is pinpointed to just the tumors...and gamma/laser isn't done when there are more than a very small number of tumors. The radiation done in PCI is a lesser dose, because IF one ultimately ends up with brain "deposits" , as I did, they want to still be able to radiate the whole brain. And PCI is only "preventative" for as long as a person stays in remission. Once the cancer shows up again...no matter where in the body....all bets are off on the preventative aspects of PCI. This is why the decision to have it needs much consideration. Once my cancer came back in the liver/pancreas....it left the door open to the brain tumors that were found in August and zapped, forthwith! As for side effects...yeah, my memory is a bit sketchy sometimes. I have trouble pulling up a word...or remembering a name....or even what I had for lunch yesterday. But...I'm at that age where I might be forgetting some of this stuff anyway. The key is to keep USING the brain. I do daily crossword puzzles, watch Jeopardy every night and read a lot. I sometimes do things w/ my left hand, as I am right-handed...so this uses a part of my brain not normally used. I do handcrafts too..like knitting. Try threading a needle with old eyes and clear nylon thread. It's not only good for the brain...it'll increase your vocabulary, too~!! All of these things involve the brain in some way...and are good "exercise" for the gray matter after a good zapping in the brain toaster! I have no regrets about having had the PCI. Had my cancer not come back....it may have been very effective. It sure has been for other people. Then again, I know people on these boards that chose NOT to have PCI and did just as well...are still NED. But having it is not a huge deal unless you do suffer from claustrophobia. Then being sort of "masked down to the table" may be difficult. It wasn't for me. I used the time to "image" a skeet shooter on his knee, blasting the h*ll out of my tumors. So far, it all seems to have worked. Only have two little tumors left...they are very small...and the radiation continues to work for a while. I intend to be around here for a while longer, those of you that might be hoping I'd take another vacation without a computer! Hahahaha. Quote Link to comment Share on other sites More sharing options...
mayos Posted October 20, 2005 Share Posted October 20, 2005 bc...You're getting alot of feedback on PCI. I didn't know much about it myself...and I ended up with a super-sized 6cm tumor in my brain. Thanks to a heavenly neurosurgeon I'm still walking and talking..... although I agree the Whole Brain Radiation changed me. The low dose of Rads in PCI is not near as damaging and offers at least "SOME" protection for our grey matter. It's still a very private personal decision for any patient. Quote Link to comment Share on other sites More sharing options...
cindi o'h Posted October 20, 2005 Share Posted October 20, 2005 bc... I am completely perplexed... I thought you have NSCLC..??? It is "possible" that nsclc can met to the brain, and the chemo that you had as is my understanding does not cross the blood brain barrier. However, I have talked with my onc and rad onc about PCI and they told me that in my case (I have sqaumous), it would not likely be of value. However, off the top of my head, I know of two of our members with non-small lc who did have brain mets. Not impossible, just not that common. Please research this into your deciding formula. Good luck to you. Good to see you still posting! Sorry the Alimta kicked you toushie...it is amazing how all handle the same drug differently. Cindi o'h Quote Link to comment Share on other sites More sharing options...
karenl Posted October 21, 2005 Share Posted October 21, 2005 Actually, it is my understanding the NSCLC quite commonly metastasises to the brain - I think this is particularly so for adenocarcinoma. I believe that the idea of using PCI in NSCLC is still a relatively new concept, and I don't think it has been established as yet whether it is of any benefit. Best of luck with your decision. It's a toughie... Karen Quote Link to comment Share on other sites More sharing options...
cindi o'h Posted October 21, 2005 Share Posted October 21, 2005 bc, sorry about the confusion. I may have misspoken and be all washed up. Since Karen's post, I was trying to find where I thought I had read about the nsclc mets to brain being uncommon and went through the archives. I thought that it was Cheryl and Jack and that whole fight and that was the source of my foggy remembering. But, when I look for those posts, they are not there. However, I did find more people who did have brain mets. Another being Karen's Mom as well as 3 more folks who had nsclc with brain mets. So, it is more common than I thought. Please excuse. And thanks, Karenl for speaking up! Cindi o'h Quote Link to comment Share on other sites More sharing options...
cindi o'h Posted October 21, 2005 Share Posted October 21, 2005 double post edited Quote Link to comment Share on other sites More sharing options...
karenl Posted October 21, 2005 Share Posted October 21, 2005 Hi Cindi I think the issue you might be remembering to do with Jack and Cheryl related to whether it was appropriate to do head MRI as standard in people who have been diagnosed with NSCLC. It seems that in some places it is a standard test, but in many instances, MRI is not done unless the patient is displaying some symptoms of brain mets. I think that the reasoning behind not doing them routinely is not related to the rate of incidence, but rather that doctors often don't want to treat the brain mets until they are symptomatic. Because the potential long term side effects of WBR can be quite catastrophic, they don't like to use it until they have to. I did try and find an article that talked about the rate of incidence of brain mets in patients with NSCLC. I know that it is increasing, as patients are surviving longer than they used to, so they have greater opportunity to develop brain mets. I think I did see somewhere that talked about 50% of patients with adenocarcinoma eventually develop brain mets.....I will have a search and see what I can find out. But I do know that it is not uncommon, unfortunately..... Best to you, Karen Quote Link to comment Share on other sites More sharing options...
SDianneB Posted October 21, 2005 Share Posted October 21, 2005 The way it was explained to me by the Rad. Onc. was that in children being treated for leukemia, they found that they had many cases in remission, only to relapse a year or so down the road, and the cause was that "bad" cells were "hiding out" in the brain, then coming back down into the body and causing havoc. The Rad. Onc. profession thought that preventive radiation to the brain might catch stray cancer and keep that from happening, so they started some independent trials and got good results. After some time, the Oncology profession in general picked up on it, and some better studies were done, and there are still some ongoing. The bottom line was that in many cases, this appeared to give a better long term result. The Rad. Onc. where I was treated said that their experience was that a 50% chance of brain mets from SCLC was reduced to less than 10% with PCI. I recall seeing some articles here and there about expanding the use of PCI for other cancers as well. You may be able to find some of that with an internet search. (Keep in mind this is a WAY oversimplified explanation -- but one I could at least understand at the time!) Di Quote Link to comment Share on other sites More sharing options...
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