Mandorg

Hi Bev, I'm right there with you on this one. Today will be day 14 of 20 for me. As of the last few days, I've begun to feel pretty much precisely as you have said - weary, nauseous and pressure in my head (i.e., headaches, although not severe) - plus the hair is now starting to abandon ship pretty rapidly and my scalp and forehead are feeling a bit irritated (like sunburn...). I am on decadron twice a day. I started out once a day with it and missed one day and was stricken with a very severe headache (it was a Sunday and I just got my med schedule mixed up...) for about 24 hours, so I'm pretty willing to stay on the decadron for now, but looking forward to the end of the treatments and the drugs. I've kept in close contact with my radiation oncologist and he has assured me that this is all to be expected and that these reactions are very temporary. I've also had some reaction to the decadron, huge apatite and mood swings (which, keeping in mind that its the steroid, are controllable although annoying). Hope you are feeling much better soon and glad to hear that you're getting off the decadron! I'll be interested to know how your symptoms progress.

Mike, Sorry to hear about the bad day... I'm raising my glass of scotch to you, but sounds like you're going to be pretty strong going into this next round (5 miles a day within a month of chemo!). You've got some positive energy coming your way from Illinois (steroid enhanced! -- decadron to counter the PCI effects). Mark

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

Jen, I just wanted to add my own two cents worth, let you know that you are not alone in finding this a VERY difficult decision, and share just a bit of my own current PCI experience. I spent alot of time with my radiation oncologists disucssing the PCI and had him off searching for 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 concept of "preventative" radiation to your brain is definitely daunting. But 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... Yes, it is frightening and uncomfortable. I had radiation to my chest for cancer in the lymph nodes and did not find that experience to be daunting. Admittedly, 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 first posted here only a week ago when I had just started the PCI and mentioned how hard a time I was having. This community has definitely helped me feel that I am not alone. I have since found a way (a visualization) that helps me through the actual treatments. I've had alot of adverse reaction to the decadron I'm taking to counter the swelling, but it is important to understand that the reactions are only the medication and that it is temporary. I'm not trying to talk you into it, but I just wanted to say don't let the fear intimidate you. You are obviously a strong woman to have come out the other end of the chemo and treatments you've endured so far.

Hi, I also had radiation pneumonitis after my first round of chemo and radiation. It was accompanied by a low grade fever (it ran 99.1 to 100.1) most evenings. I don't know if the fever is typical, but the oncologists was fairly sure that the fever was from the pneumonitis (inflamation). It was uncomfortable for a while, but it ran it's course after about a month and I'm doing much better now. Of course, I'm sure everyone would have a slightly different experience.

Thanks to all of you for your replies. It really is good (for the most part) to hear from others who are going through a similar battle. It touches me on an emotional level I perhaps have not really been willing to get too close to, but I think that it is important that I begin to get in touch with these feelings and that I begin to understand a sense of connection and empathy with others. I tend to live in my head, analyzing situations and using logic to determine action. 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). My symptoms began in mid-April of last year, headaches, fevers, pain in various areas... First diagnosis was eye strain and that I should get new glasses! By early July, after numerous blood tests and about 10 different medicinal prescriptions, my doctor had finally "decided" on a diagnosis of fibromyalgia and associated depression. Luckily, I did not agree with her. I found another doctor and within two weeks was scheduled for the mediastenoscopy which would lead to the proper diagnosis of SCLC primarily in the lymph nodes (at first, the surgeon who did the mediastenoscopy was fairly sure that it was lymphoma, so the final diagnosis was a bit of a shock). The reason I went into this was to say that at the time of the diagnosis, I had spent 4 months in 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 quit smoking date one week before Christmas (I'll get to the smoking...) 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. I worried, and I still do, about any long term effects that may develop. The loss of any "cognitive ability" is frightening, but the alternative is 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 the smart thing to do. 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. I had worked on setting myself up a visualization of the radiation creating a "barrier" to protect me, but the invasive sensation of the treatment has made me alter that visualization. I'm still working on it, but I'm visualizing the brain becoming "tough" and repellant from the treatments. 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. I am also continuing to fight the battle against smoking. I officially quit on December 18, 2004. But since that time, I have probably smoked about 30 to 35 cigarettes. My wife is not aware of how many I have had. I have been through the shame and self-pity routine on this so many times I've lost track. I have certainly gone periods without any. I went over two weeks without a single cigarette in January, but it has been a back and forth battle. To deal with the additional stress added because of the cancer, the hospital costs, the lifestyle changes, the loss of things I haven't even mentioned, and this is the time when I am trying to give up smoking, which for 25 years has been my most "successful" stress reduction technique. I have always used smoking as a way to stop and center myself. It's been sort of my "touchstone" and now it shows itself in reality to be the enemy. I'm still working on it... One of my biggest issues is that I have put on too much weight. Strange, after losing almost 40 pounds from the cancer last year, I'm now worried about putting on too much weight. But I am. Frankly, I'm scared. I'm scared that I don't have what it takes to fight this, because what it really takes, what makes the fight worth fighting and what brings you through to the other side is the true and honest desire to live and the knowledge that you deserve it. The true belief that the life you have chosen, the life you will lead from now on, the life that you are fighting for is a life worth living and a life that has meaning and true value. It's always been the battle, to live a life of real value. But now perspective forces us to understand what is valuable to each of us as we fight against the cancer that threatens to take that away. I'm still working on it... For me, there is a place in Utah. It is a desert canyon named "Dark Canyon". (I"ve posted a couple photos on my website at www.earthlyicons.com/darkcan.html - this is not a plug for my website, only to share the photos of the canyon). In 2001, I went there alone on a backpacking trip. It was my dream trip. I was going to hike the canyon for 18 days alone, and it was going to change my life -- sort of a spirit quest or vision quest. I prepared for months, getting the best equipment, reading all I could on backpacking and camping. At the same time, my wife was heading to Spain to walk the "Camino" -- an ancient 500 mile pilgrimage across the French and Spanish countryside. We were to be living out our dreams and to come out with a full vision of who we were and what our lives were to be. That was the intent, although we downplayed it when we talked about it to others, not wanting to be seen as naive or overly idealistic -- still, there was that feeling inside that we "knew" that this was our chance, that this would be the great event in our lives to change us forever and put each of us on the path to our "true meaning". On the way down to the bottom of the canyon I sprained my ankle. I wrapped it and continued. The next day, the thunderstorms in the mountains to the north a couple days earlier finally showed themselves by turning the clear blue water in the stream into a muddy chocolate milk consistency. Three days into the trip, my water filter clogged and I could no longer get clean water to drink. Despondent, limping and thirsty, I turned around and walked out. I felt that I had failed. I think that I still feel that way. My goal is to get back there and complete what I began. It may not mean anything in the grand scheme of things. It may not be the vision quest I wanted it to be. It may simply be 18 lonely days trudging along with 40 pounds on my back in a beautiful desert oasis. But it has become my white whale. And for that, I will fight. It helps to drive me. It is one of the myriad of dreams that I want to pursue in my life. And at times such as this we must cling to each of our dreams and pull ourselves forward toward them with all the strength we can muster. Each of them, no matter how silly or seemingly unreal, has value and has the potential to be that one thing that finally pulls us through to the other side. I've written more than I intended. Something of a catharsis I suppose. I think that I need to feel this on a personal level that I have not allowed myself to really embrace yet. The fear can be so overwhelming. The dreams can feel so out of reach. But if I don't live with a willingness to embrace that part of myself that holds onto those dreams, then I don't think I'll survive. I truly believe that the cancer was a "wake-up" call. Now I just have to learn how to really live. And I have to believe that it is possible and that I deserve it. I'm still working on it... Mark L. Milanich Diagnosed with limited stage SCLC in 8/2004, age 42 Radiation (28 treatments) and chemo (4 sessions) completed 10/2004 CT Scan showed NED 12/2004 Began PCI 2/23/2005 (20 treatments)

Just found this site and am almost afraid to become involved. I think that I have been trying to live in denial to some extent. But not an hour goes by where I am not aware of what I have gone through and continue to face. I was diagnosed with limited stage SCLC in August, 2004, completed chemo and radiation and showed no evidence of cancer on latest scan. Started PCI last week. It's been really difficult to have the PCI. When the cancer was present and I was receiving radiation to the chest (cancer primarily in lymph nodes), it was relatively easy to accept the treatment as an effort to battle the cancer cells that I knew were present. The PCI, however, has been a completely different experience. It feels invasive and frightening. I am working on finding a visualization to help me through the process, but this has been difficult because the physical sensation of the treatments has been very unexpected. I really should be grateful that, so far, I have had no adverse side effects from the treatments. Part of my fear of becoming involved in any support groups has been that I am afraid to hear the possible bad times that could be ahead for me or to hear what side effects I may have to face, but it has been difficult to approach this feeling no connection to anyone else. I'm really beginning to wonder, though, what this experience has been like for others and how they have been able to cope with it, including the constant fear of what the future might bring. Mark L. Milanich Diagnosed with SCLC in 8/2004, age 42