Sam'swifeShirley Posted March 22, 2003 Share Posted March 22, 2003 Hi everyone, I just wanted to let you know that I'm still here and lurking mostly. I've read the good news and celebrate with you and I've read the bad and continue to pray for you. I continue to fight what appears to be an atypical case of radiaiton pneumonitis. Atypical in that it just doesn't want to respond to steroids and the steroids seem to be causing more side effects than they are worth. My pulmonologist says to taper them. My breathing is worse and I'm on oxygen 24/7 now. I'm pretty much stuck at home. My "early delayed radiation encelopathy" from the PCI that I had in December seems to be slowly improving. I'm only sleeping about 12 hours per day now, down from 16 or so. My esophageal ulcer seems to be slightly better and I seem to be getting a little fuzz on my head. My wife and family and friends continue to be extremely supportive and I continue to fight even though my docs seem to be all clueless. I'm here and plan to stay. God bless us all. Quote Link to comment Share on other sites More sharing options...
Guest hopeful2 Posted March 22, 2003 Share Posted March 22, 2003 Sam, hi. I hope you soon get better, much so, and get off the 0xygen. I have a question regarding the PCI. I see you had it in Dec. Did it really make you sleep so much? I am suppose to have it soon. I will get a scan the 31st and go from there but gee, I thought I could have it in April and planned to be back at work 1st of May. I am a RN and manager a large dialysis unit. Requires lots of mental work. Will I be up to it? Quote Link to comment Share on other sites More sharing options...
Sam'swifeShirley Posted March 22, 2003 Author Share Posted March 22, 2003 Hi Hopeful, After all my research, I became a believer in PCI and I guess I still am. The stats do show a real benefit in decreasing brain mets and increasing survival. But after having it, and doing more reading, I think that most of the docs either don't fully realize or intentionally downplay the side effects and potential side effects. My radiation oncologist virtually guaranteed me that I would have severe sleepiness and it would come on mid to late in the three week course of radiation and last for a few weeks to a few months. She was wrong. I finished PCI right before Christmas. I was back to work full-time in January but the sleepiness hit hard in late February and hasn't let go yet. Unfortunately, I wouldn't count on being back to work full-time that soon. I'm going to try to put a link in to one of the best (and scariest) review articles on brain radiation side effects that I've found. I don't mean to scare anyone out of PCI but, I'd probably still do it, but as I said, I think there's more to it than I realized when I did it. God bless us all, Sam http://home.mdconsult.com/das/article/b ... 1902000312 Quote Link to comment Share on other sites More sharing options...
AdaW Posted March 23, 2003 Share Posted March 23, 2003 Hi Sam, I have been wondering how you are doing so it was good to read your posts today. I am also on oxygen 24/7 right now. There had been some improvement in my breathing after my surgery, then I developed bronchitis and that's why I need the oxygen again. I'm on a pretty long leash here at home. I can walk everywhere I need to go in our house on one line. It's pretty amazing. I also have a "portable" tank to use when I am out, but I hate lugging that thing around. I am going to look into getting a lighter, more portable Pulse O2 tank if I need to be on oxygen for awhile. Take care Sam, Ada Quote Link to comment Share on other sites More sharing options...
JudyB Posted March 23, 2003 Share Posted March 23, 2003 Sam, It's just reassuring to have you around. What is PCI? I'm sure it's been described, but I either missed it, or it's one of those things that didn't stick in my poor brain. Even tho you are on oxygen, I hope you are feeling OK. My husband and I used to golf w/a couple and he was on oxygen 24/7. Didn't stop his golf game!!! JudyB Quote Link to comment Share on other sites More sharing options...
David P Posted March 23, 2003 Share Posted March 23, 2003 Hey Sam, good to see you still around, hope things work out for you. A little fuzz is good, and I sometimes wish I could get 12 hours of sleep. Stay in touch, David P. Quote Link to comment Share on other sites More sharing options...
Sam'swifeShirley Posted March 23, 2003 Author Share Posted March 23, 2003 Hi Judy, PCI stands for "Prophylactic Cranial Radiation" and it is generally reccommended for Limited Stage SCLC patients who acheive a complete remission. It cuts the rate of future brain mets by 50% and increases long term survival by 5%. It does have potential side effects of course. There are some discussions on the board over the last few weeks. God bless us all, Sam Quote Link to comment Share on other sites More sharing options...
Laurie Posted March 23, 2003 Share Posted March 23, 2003 Dear Sam, I am so glad to hear of your improvement. I continue to pray for your healing and think of you often. My Mom is currently undergoing PCI and I tried to read that article and it said that I had to have a pass word??? Although I'm not sure I want to read it at this point. My Mom wants to do the PCI as she is totally freaked out about the possibility of Brain Mets. She also has a friend who is having brain radiation for as a preventative measure because she had a brain tumor surgically removed so they are supporting each other. Praying for you. Laurie Quote Link to comment Share on other sites More sharing options...
Guest hopeful2 Posted March 23, 2003 Share Posted March 23, 2003 Sam, my doctor is only going to do 2 weeks of PCI at "low dose." How long did your txs. last? Quote Link to comment Share on other sites More sharing options...
Sam'swifeShirley Posted March 23, 2003 Author Share Posted March 23, 2003 Hi Hopeful, I had 15 treatments of 2Gy each over three weeks (30 Gy total dose) There is no "standard" PCI dose and the range runs from about 12 GY to 34 Gy. Gy stands for Grays which is the unit that they use to measure radiation dose. Studies show a slight trend towards better success at reducing brain mets with higher doses but it's not statistically significant. At this point, I think a low to medium dose is what I'd go for and it sounds like that's what you have planned. God bless us all, Sam Quote Link to comment Share on other sites More sharing options...
SandyS Posted March 24, 2003 Share Posted March 24, 2003 Sam - 30 gy total?!?! When I asked my radiologist a week ago how much I would be getting, he said, "oh don't worry, not as much as your chest. We gave you 8000 there, this would only be 2400." WHAT?!? Are we not comparing apples and oranges here? (He did explain to me that it's measured in "gy's")..... SandyS Quote Link to comment Share on other sites More sharing options...
Sam'swifeShirley Posted March 24, 2003 Author Share Posted March 24, 2003 I got tired of looking at the bald head myself. This is about a two year old pic of Shirley (my greatly better half) and me. The beard is back in full force since they sheilded my face with the head radiation but the head hair still has a long way to go. On the PCI. They sometimes use four digit numbers and they are actually talking centigrays (2400 cGy) a centigray is 1/100 of a gray and I think it's the same as a rad. Other times they use two digit numbers which are Grays (30 Gy). It gets confusing. God bless us all, Sam Quote Link to comment Share on other sites More sharing options...
Laurie Posted March 24, 2003 Share Posted March 24, 2003 Hi Sam, I like your picture I called my Mom to ask her how many units she was getting but she didn't know. She said she would ask, but I can tell that she didn't want to think about it. She got an answer similar to Sandys without the numbers. I told her I need the numbers... I don't want her to get mad at me. She said she is doing it, made up her mind and didn't have any problems with her chest radiation just chemo... She is terrified to have that again! Thought it was going to kill her. But she is really struggling with clostraphobia (panicing). I think she will be okay maybe just take some ativan? She is going to try to schedule it so her friend will go with her, Her friend is have 30 treatments with a higher dose because she had a brain tumor, so my Mom feels lucky to be getting less. Mainly due to the Clostraphobia.. Any suggestions...??? My Mom said she would find out for me, i told her I just wanted to read up on it. And she sighed, so I said I'm glad your having it done! Hang in there and she seemed okay. I trust her doctor and the Lord to take care of her, but I feel powerless. God Bless Us All! Laurie Quote Link to comment Share on other sites More sharing options...
Sam'swifeShirley Posted March 24, 2003 Author Share Posted March 24, 2003 You know after all I've been through, I'll have to say that the thought of more chemo doesn't bother me nearly as much as the thought of more radiation. Of course I don't think I can have any more anyway which is fine with me. I think I'm just one of those people who is extremely sensitive to it and if I ever get over this, I don't think I want any more. I just spoke to my radiation oncologist. I really like her but she too is clueless about my case. She says she's never seen a case of radiation pneumonitis as resistent to steroids as mine is. --- And I just now got off the phone with my new pulmonologist who says to continue to taper the steroids. He's concerned that it might not really be radiation pneumonitis but "something else" (read recurrent cancer) causing the problem. I think, hope and pray he's wrong. Maybe repeat bronchospy is in the plan. I think I'll take a nap. God bless us all Sam Quote Link to comment Share on other sites More sharing options...
Laurie Posted March 25, 2003 Share Posted March 25, 2003 Hi Sam.. Katie and all, Sam I know I tell you this a lot but I continue to pray for you and tonight I am putting your name on My Bible study prayer group list...100 women will be praying for you tonight...They are such great people, God will be listening i'm sure of that! I just called my Mom and she is getting 36 Grays??? 18X2 one gray to each side.. Seems like a lot doesn't it?? I quess that she feels she has the best radiation oncologist..??? Then she said.. someone said was trained by some famous Dr. at Beth Israel hospital in Boston and Dana Farber... that is what she said and I trust Him".. it's like okay Mom....???? My Mom is very trusting... half the time she doesn't remember what the doctors said. I hope and pray that all goes well for her. I told her that was high and she said that is because i'm going to beat it! we are being agressive... I hate this freakin' disease... s..cks .. so bad... Makes me and all of us... a mess.. guess i'll go home and watch the war ???? Nope need to go to church... God bless you Laurie Quote Link to comment Share on other sites More sharing options...
Sam'swifeShirley Posted March 25, 2003 Author Share Posted March 25, 2003 Hi Laurie, I do appreciate the prayers and please tell everyone that I do. I had two opinions about PCI and one of the two was to get 36 Gy in 18 2GY treatments and I almost went with it but my regular radiation oncologist talked me into sticking with 30 Gy in 15 treatments. 36 GY is the highest dose of PCI given but is obviously not "wrong" because lots of radiation oncologists reccommend and use this dose, including the one that I saw, who is considered one of the better ones in the Atlanta area. Remember, therapeutic doses, for known brain tumors go a lot higher than that. It is well known that some people are just more sensitive to radiation than others and I think that I'm one of those people. I will pray for you and your Mom too. God bless us all, Sam Quote Link to comment Share on other sites More sharing options...
Laurie Posted March 26, 2003 Share Posted March 26, 2003 Hi Sam, Now that i think of it, My Mom's tumors were big enough that the doctor had said to her that he had never seen a case with chest tumors so large that did not mets to other areas. He told us that it was probably extensive SCLC in the beginning and we were all doom and gloom ... We cried and hugged when we found out there was no mets...we were preparing for it..then once she was staged later they said it was a miracle that there were no mets. She had a terrible time with chemo, she was on like 12 medications and still throwing up. "the nurse said she was on everything but the kitchen sink"...I hate to have anyone read this who is new here and freak them out but the fourth one she threw up from Jan 9th to Feb 3rd. We rushed her to the ER twice and she had always got IVs for one week after chemo but it started to be a daily routine of going to the hospital daily for IV's we would drop her off at 8am and pick her up at 5.... She started to look like this girl on survivor... Her teeth were looking really big on her face, eyes sunken in etc. The chief oncologist sat down with her and told her he thought it was spreading to her brain or liver causing her to be throwing up. He did more scans and thats when we found out she was actually in remission. I was actually preparing to here bad news... a welcome surprise and miracle! So maybe it is good to be more agressive with the radiation for her since she has the sensitivity problem with chemo (if anyone reads this .. it is not the norm)..... I worry that she only had 4 chemos and they wanted her to have six the doctor said he didn't think he should give her anymore.. the throwing up was never fiqured out, he just said her body is saying, "don't give me anymore of that!.... So maybe the higher dose is for the best.. i'm reallly not sure but it is her decision so i have to think positive and hope it is the right one. Anyway the prayers for you were really great tonight, I could feel the power of the Lord! Take care and get lots of rest... Laurie Quote Link to comment Share on other sites More sharing options...
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