denn1don Posted March 8, 2005 Share Posted March 8, 2005 My wife's Cat Scan showed NED. We are both thrilled beyond belief. We are talking about PCI. Can anyone give me the pros and cons of PCI? It seems like the next step but does evryone get it done? thanks dennis Quote Link to comment Share on other sites More sharing options...
Cindy RN Posted March 8, 2005 Share Posted March 8, 2005 Their are several on here who have had it done. I chose not to mainly due to the memory loss some have had. Everybody has to make that decision on their own. Good luck, GLAD ABOUT THE NED!!!!!!!!!!!! Cindy Quote Link to comment Share on other sites More sharing options...
stand4hope Posted March 9, 2005 Share Posted March 9, 2005 Wow! It doesn't get any better than NED! A big congratulations coming your way. Sorry, I don't have info on PCI, but others will sign on and help you out. Again, CONGRATULATIONS! Love, Peggy Quote Link to comment Share on other sites More sharing options...
Mandorg Posted March 9, 2005 Share Posted March 9, 2005 I started another thread here ("Just began PCI"), but wanted to post in your thread also my experience. Some of this will be repeat, but I think it always helps to hear from as many perspectives as possible... With respect to the PCI, when I was diagnosed and the radiation oncologist was going over the treatment options and recommendations, he talked about doing the PCI a couple months after the end of the initial treatments (28 days of radiation to the mediastinum and 4 rounds of chemo). By the time I was CORRECTLY diagnosed, I had spent 4 months in severe pain, running fevers, losing weight (35 pounds), not sleeping, etc., etc. so that when the oncologists gave their recommendations, I was ready for anything. I was basically saying to throw the kitchen sink at me and I'll take it. The radiation to the chest area occurred in conjunction with the chemo treatments, so all the sickness, weakness, hair loss, etc. was just one big battle that I knew was a part of the process to rid myself of the cancer that we knew was there. During the radiation treatments to the chest, I used a visualization to help me deal with the process. I really felt no physical sensation other than a distinctly unpleasant odor during the actual radiation. Jump to late December, I'm finally starting to feel better, going back to work, traveling to visit family for Christmas, over a bad case of radiation pneumonitis, I've got hair again, I feel strong enough emotionally to set my complete quit smoking date one week before Christmas (I had been cutting back for weeks) and now the prospect of having my brain irradiated is not looking too appealing. It seems trivial and stupid, but I was even upset about losing my hair again. It had just started coming back again, and now the treatments would take it away again. In the grand scheme of things it seems pretty petty, but it was important to me and my state of mind. I worried, and I still do, about any long term effects that may develop. I spent alot of time with my radiation oncologists disucssing the PCI and had him off searching for countless studies to give me as much statistical information as I could get. From the studies he cited, the chances of metastasis in the brain can definitely be reduced by up to half. It doesn't reduce the chances to zero, but I'll take a 1 in 10 chance over a 1 in 5 chance any day. The loss of any "cognitive ability" is frightening, but the alternative is, for me, unthinkable. My wife and I went over statistics (not always a good thing to do) and came to the quick realization that going through with the PCI was clearly, for me and for us, the thing to do. I knew, for myself, that given my age (42) and my improving health (NED currently), I had to give myself every opportunity to live another 42 years, or more... I knew the choice I would have to make. I knew that the fear of the treatment had to be dealt with, and that meant that I also had to deal with some of the fear associated with the cancer. The prospect of the cancer metastasizing in the brain had to be dealt with on an emotional level and on a real basis so that the fear of the treatment could be put into perspective. It was just a matter now of building up the nerve to call the oncologist and say "okay, let's go". Obviously, I did that and have begun the treatments. A total of 20 treatments. The first PCI treatment was very disconcerting for me because it was so different from the treatments to the chest area. I mentioned above that there was a distinct odor to the radiation, well now the odor was much stronger and I could feel a tingling sensation in my nasal cavities, along with a flashing of blue light and a general sense of invasiveness that was not present in the radiation to the chest. A week into the treatments I was able to create a positive and strong visualization of diving into blue water and feeling it wash over and cleanse me during the actual radiation treatment, breathing out all the while as though expelling any negativity and sickness. I have had alot of adverse reaction to the decadron I'm taking to counter the swelling (e.g., severe mood swings, temper outbursts, weight gain, heartburn,etc.), but it is important to understand that the reactions are only to the medication and that it's a temporary thing. I'm now halfway there, and simply knowing why I'm reacting the way I am has helped, although for a few days I was not aware that the wild mood swings were the decadron (then it dawned on me - it's a steroid - - DUH!). I don't know if the methodology for treatment would be the same for you and I don't know off-hand the dosage, but it is pretty "creepy" (sorry, it's the best word I can come up with right now). They created a "mask" of my face using plastic mesh which keeps my head immobile during treatments. They've told me that I can keep the mask afterwards, so I'm thinking of make a "chia-Mark" out of it later. I guess the point is that it is creepy, invasive, intimidating, frightening, unexpected, and everything, but the alternative remains unthinkable. The alternative is to not fight. The alternative I've tried. I lived the alternative for 25 years figuring that I was immune, that I would not be in that small percentage that developed cancer from smoking. My grandmother lived into her 70's smoking and had no smoking related health issues. I no longer feel immune. I feel vulnerable and frightened. It's certainly to be expected. But that doesn't make it any easier. I guess the PCI is a way that I can feel that I am continuing to fight. To get stronger. To be less vulnerable. Still, the radiation to the brain had me shaking in my boots. My wife and I spent alot of time talking and we both knew that any effects of the radiation were going to be minor in the grand scheme of things compared to the alternative of metastasis of cancer in the brain. I guess my best advise is not to let the fear intimidate you and make your decision for you. Either way, you have to decide what the possible costs and benefits are for you. There's no way to be sure of the outcome, but do what you feel gives you the best fighting chance at a long healthy future. All my best wishes, Mark Quote Link to comment Share on other sites More sharing options...
Frank Lamb Posted March 9, 2005 Share Posted March 9, 2005 Dennis,Congratulations on NED.That is terrific. Quote Link to comment Share on other sites More sharing options...
Don Wood Posted March 9, 2005 Share Posted March 9, 2005 Great news, Dennis. NED is great news. Don Quote Link to comment Share on other sites More sharing options...
daggiesmom Posted March 9, 2005 Share Posted March 9, 2005 Just to give my history. I'm a 36 month (almost April 2002) SCLC limited survivor. I did not have PCI. My doctor didn't push this issue with me, I think because, he felt I didn't need it. I have read all the pros and cons connected with this and it seems it is a personal call. It seems to me to be a gamble. All the factors being age, physical health otherwise, any other existing issues, that all roll into a decision as to whether or not it is right for you. In my case I was 48 at diagnosis, had relatively good health otherwise and am a strong person physically. I think my dr. took all those things into consideration. When I spoke to him about it, he responded, rather solemly, that he didn't think it was right for me. I trusted his decision and, so far, have not regreted doing so. I hope that you have good results, whatever decision you make. Keep your chin up! Joanie Quote Link to comment Share on other sites More sharing options...
cindi o'h Posted March 9, 2005 Share Posted March 9, 2005 congratulations to your wife on her ct scan!!! that is the best news that I have heard in awhile, Dennis. don't have any advice on the pci...sorry I am nsclc... But, I want to share that my good buddy, JoeBug just had a good ct scan today too. His two lung tumors are less that 1cm! He has heart cancer with lung mets and he has been having chemo's every three weeks for a week solid for two years now and this might buy him a chemo break!! I tell ya. This cancer has its' highs and lows for all involved. They are going out tomorrow for prime rib. What will you and the Mrs. be doing? love, Cindi o'h Quote Link to comment Share on other sites More sharing options...
deruo Posted March 9, 2005 Share Posted March 9, 2005 That is great news about NED! Congrats! The decision to do PCI can be a tough one. I was afraid that we wouldn't even get the opportunity to consider it but I have to say, though I'm not crazy about moms rad onc, he did finally decide to treat her with radiation and presented the options for PCI quite well. Non-aggressive: basically the wait and see approach. He said that chances of something going to the brain were fairly high. If and or when something comes up, they'd treat it (with radiation) Aggressive: giving it all you've got. Said that the window for doing it was narrow and that PCI would reduce the chances of a met to the brain substantially, but that of course, there were no guarantees. I seem to recall him saying that once we did PCI, that chances were that radiation to the brain in the future were not likely. Major side effect of PCI is fatique. She decided to take that small chance for a cure and opted for the aggressive (PCI) route. Note that my mom had PCI and chest radiation at the same time. PCI was done at the end. That finished just over a month ago. I'm always saying that everyone is different. I haven't found her as absent minded as she was from chemo, but she just started feeling the fatigue a few weeks ago. The process can be scary, but I found that the staff were great, explaining the steps including the mask making. I found Diannes PCI Diary very helpful as well. Thank you Dianne! Quote Link to comment Share on other sites More sharing options...
bev Posted March 9, 2005 Share Posted March 9, 2005 Hi Dennis, I am just finishing up l5 days of pci I have 4 left to do. I also was very fearful of the whole process and the long term effects. I did alot of reading up on it and survival rates improve with pci. I started to look at it as I can only hope to live long enough to have long term effects. My doctors felt this would be the best for me and I trusted them completly.For me if I did not have it It would always be on my mind. So now that I am finishing up, I can say I did all that I can do right now and what will be will be. I wish you the best. Quote Link to comment Share on other sites More sharing options...
Remembering Dave Posted March 10, 2005 Share Posted March 10, 2005 Dave had PCI, he was first diagnosed with limited SCLC, did the chemo and radiation, got NED, had the PCI. The PCI was definitely harder on him than the chemo and chest radiation which he had at the same time, but well worth it in our book. Why? Because when he got his first return of the cancer, at just about a year later, it was in his right frontal sinus cavity and surrounding skull. Dave says it could have very well tried his brain but because of the PCI got stopped where it was. No way to ever know. and in fact, he's been followed now for possible brain mets although the neurosurgeon has said all along he doesn't think it's mets but radiation damage since the part of his brain where the suspected mets are, are right at the intersection of where the sinus radiation treatment would have criss crossed with where the PCI hit. does this make sense? we see the neurosurgeon Monday morning and he should make his final determination at that time so we'll see. I'd do it. SCLC is NASTY AGGRESSIVE stuff, and why bypass ANY TREATMENT for it? Karen Quote Link to comment Share on other sites More sharing options...
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