mama4zach Posted June 10, 2005 Share Posted June 10, 2005 Hello Everyone, Hope everyone is as good as can be in the situation that we are all in. As you guys might know I have finished my chemo of cisplatin and V-16 and have gone for my 1 month scan after chemo and radiation treatment. I was dx with sclc in Jan 2005. Had a mediastinoscopy and found a tumor in lung with mets to lymph nodes. So my dx was limited. When I went for my one month scans, my oncologist recommended that I have the PCI treatments as a preventative measure but the more I read on the board the more I don't want to do this. I am on my way back to normal and to think of being down and out again i just can't even think about what it might do to what good cells i have left. The radiation they did on my lung almost burned my esphogas out. I have lost 20 lbs and I have a 3 year old grandson I am raising. Please someone give me your advise on the treatments...Would you do it again or not if you have had the PCI????? I am anxiously waiting for some responses. I am just so confused and frightened at this time. Please help. Love and Prayers, Nancy (Mama4zach) Quote Link to comment Share on other sites More sharing options...
Cindy RN Posted June 10, 2005 Share Posted June 10, 2005 My situation is different. My sclc was extensive. In 2003 when it came back we discussed PCI and I opted not to have it. Many on here have had it and done well. Pray that you make the right decision for you. Love Cindy Quote Link to comment Share on other sites More sharing options...
Patkid Posted June 10, 2005 Share Posted June 10, 2005 Prayers for you! and love. Pat and Brian Quote Link to comment Share on other sites More sharing options...
terriep Posted June 10, 2005 Share Posted June 10, 2005 I'm afraid I don't have any information for you, either, but want you to know I will continue to keep you in my prayers- Quote Link to comment Share on other sites More sharing options...
john Posted June 10, 2005 Share Posted June 10, 2005 Here is some info. The last study says there is about a 5% increase in survival at 3 years. http://theoncologist.alphamedpress.org/ ... st;5/4/299 http://www.ncbi.nlm.nih.gov/entrez/quer ... query_hl=1 http://www.ncbi.nlm.nih.gov/entrez/quer ... query_hl=1 http://www.ncbi.nlm.nih.gov/entrez/quer ... query_hl=1 http://www.ncbi.nlm.nih.gov/entrez/quer ... query_hl=1 Quote Link to comment Share on other sites More sharing options...
Addie Posted June 10, 2005 Share Posted June 10, 2005 I finished first line chemo last September and had 13 sessions of PCI in November. I do not regret having it and I had virtually NO ill effects from the radiation. I think most people would say that bad as it is having cancer at ALL, there is something especially worrisome about having it met to the brain. Now...having SAID that...there are people here who've had brain mets, had them treated...and are doing fine. Everyone is different. But I had the PCI because I felt it gave me SOME level of protection against the cancer going to my brain. So far....so good. The cancer DID come back...but in my liver and pancreas and I just finished 6 more cycles of chemo and am feeling and doing fine. Scans next week to check the status of things. But...I would recommend the PCI if they are offering it to you. The way I looked at it....if I DIDN'T have it...and ended up with brain mets....I would have felt like I hadn't done everything I COULD DO to try to avoid brain mets. That was just MY way of viewing it. But other than the potential for a little nausea or maybe some dizziness (and there are meds for that!)...I truly had NO problems or side effects from the PCI. Hope this helps you decide. Best of luck and let us know your decision. Quote Link to comment Share on other sites More sharing options...
Nancy B Posted June 10, 2005 Share Posted June 10, 2005 Hi Nancy, I agree with Addie about the reasons for having PCI. I had 20 treatments last November. I was on low-dose Decadron for brain swelling (no big deal). I would go for my treatment at 8:15am and then drive to work. My ears got really red, but there are creams for that. I had some fatigue but nothing I couldn't handle and still work. I am having some minor balance problems and some short term memory problems, but I think that is the age (58) more than the radiation. My husband is having the same problem and he didn't have radiation and is 2 years younger than me! I would definitely do it again. My hair is coming back in slowly but surely. If you have any questions, please pm me, I'll be glad to give you my number if you want to talk. Take care. Nancy B Quote Link to comment Share on other sites More sharing options...
SDianneB Posted June 10, 2005 Share Posted June 10, 2005 My experience with PCI was mucy like Addie's -- a little fatigue, and an ugly mohawk hairdo (!) was about it. Keep in mind that my goal from the outset was quite simple: to maximize my survival. I felt that there was a significant benefit to having the PCI as opposed to not having it. I asked a lot of questions and read a lot of studies before making my final decision, but must say that I was inclined to have it all along. I suppose that, like Addie, I wanted to know that I'd done all I could possibly do to further myself along in my goal. It isn't an easy decision -- not by any stretch of the imagination. My best wishes to you. Di Quote Link to comment Share on other sites More sharing options...
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