Outrider1

So what's the rub here? From what you stated about the Grace Dr.s responses to your question; 1. it was in relation to SCLC not to NSCLC as your original post was and 2. That they agreed that in regards to NSCLC that PCI/WBR showed no added benefit just as the study suggested. Those two posts had responses about questions of spinal fluid and cord which had nothing to do with the original study information that you posted. The original post was that the study was conducted to determine the effectiveness of PCI/WBR as a preventative for NSCLC to the brain. I found both of the responses not "cute" but informative and well thought out but I did not take them as "gospel" on the subject. My PCI was 8 days both times and the actual radiation to the brain lasted maybe 30 seconds not the ten minutes as suggested in the study information. The whole time from on the table being adjusted to strapped down to unstrapped, and off the table was 10 minutes or less, every time. Ten minutes of radiation seems excessive to me and woulds certainly cause cognitive damage and memory loss problems. As to the spinal cord and fluid, it stands to reason that cancers cells travel in a fluid system, ei. lymphatic, circulatory, or cerebreo-spinal fluid just as all other things that affect are whole body do (drugs, infection, virus, etc.) So treating the fluid makes sense. The problem is that the closer you get to the brain and in the brain itself, the pathways for the fluid to travel get smaller and smaller so that the larger molecules of whatever drug they are using can not get in. The larger capillaries in the CNS surround the spine, so it stands to reason that you would treat the spine with treatment that would cause the LEAST amount of possible damage (ie. chemo v. radiation). Since most chemo will not cross the blood brain barrier and may not get rid of all of the cancer cells in the CNS, PCI/WBR is used to try to reach those cells. Although SCLC is extremely aggressive, it is an easy "kill" in that Chemo and radiation both work on it rather well which is not the case with NSCLC. There are several drugs out (navalbine comes to mind right off the top of my head used for NSCLC)that are thought to be able to cross the blood brain barrier and are being studied for use for SCLC. The ones you mentioned in the second part of the post are targeted to NSCLC and do not work as well or at all for SCLC. Since SCLC is less common the NSCLC more work is done in that area of research in order to reach the most people with any possible new breakthroughs. The first part of the Hyppocratic Oath is "First do no harm" I see this in the post from the Grace site. Radiation is extremely damaging and the body can only take so much radiation in a lifetime, so why use that if something less damaging will do? Although most chemo currently destroys all cells, there is research on-going right now for new therapies and chemo drugs that target specific cancer cells and not good healthy cells. There are also new targeted radiation treatments being used for treatments to the brain as well as all other areas to minimize exposure and damage. And please explain to me how one cancer drug can run a several different types surgeons away from a Hospital/Medical Center? It certainly isn't because the surgeons are out of business as they work on all things related to their areas of expertise not just removal or eradication of cancer. I realize this was in response to a similar experience shared by ginny but it sound like from the beginning of the response to me and then included to ginny that you were more angry at the Grace Dr.s posts and your experience with the Medical treatment center than in the fact that all things posted after the original study information you posted agreed with what the study said. I am not trying to be confrontational at all, however I do not understand the rationale behind your reply post to me when I agreed with what you and the original two posts were saying. Although, I am no Dr. (as I have stated several times before) so my agreement is really immaterial, I did appreciate that you brought the information forward. Maybe I am missing something fundamental here. If so please let me know. Dawn

Thank all of you soo much! Although I don't post a lot, I would never would have come this far with such a good attitude and positive outlook without you! Dawn

This is interesting reading. They did a study to back up the what the doctors are already practicing confirming that they are doing the right things. Most Onc.s do not recommend PCI for nonSCLC patients and WBR is only used after mets are found in the brain. As I have ext-sclc and have had PCI (twice Mar09 and then again Jul09) and am considered in the minority of that type of LC at the VA where I go, I have yet to see any of the Non-Sclc patiients sent down to RadOnc for PCI. They usually only have radiation to their brain(WBR) when mets are found and it is targeted to the the tumor itself and not to entire brain. When I asked some of them about it, they tell me they are sent for radiation to shrink or destroy (hopefully) their tumors only and not as a preventative and the radiation is only to the location of the tumor directly. My Onc.s (I see several different ones) all have said the same thing. Dr. West over at Grace says the same thing as my Onc.s about the relationship of radiation in the preventing future mets with Non-sclc. I also asked about the radiation to the spinal cord in relation to the fluid and was told that the larger molecules of the chemo are thought to be able to pass through via the capillaries surrounding the cord as they (the capillaries) are larger than the ones surrounding the brain and once the fluid reaches the brain the molecules are too large to pass through the smaller capillaries. Radiation to the spine is usually only used to treat for pain management or to remove actual tumors and not to treat the fluid for floating cells in the fluid for that reason. They think that the chemo can reach the the fluid surrounding the spinal cord. I am no Dr. so this is only the stuff I have been told by the Dr.s and what I have been able to pick up through researching on the internet and at the library. It is nice to know that someone (People doing the research) is back stopping what the Onc.s are practicing with the studies that they are doing the right things. Thanks for the information and interesting read. Dawn

Thank you all! I first got on my knees and thanked my God. Then I celebrated! I still feel like jumping up and down and yelling but have not out of a need for decorum and the fact that my balance is so "wonky" still.. But I have given several fist pumps in the air and hollered "yeah!" Thank you my friends Dawn

AS of Friday, all of the masses in my chest, and the areas of mets (with the exception of my left hip and femur) are no longer there. When I said "you mean they are not longer showing any signs of activity?" ; she said "No, I mean they are gone. no signs on any scans showing those masses. The left hip and femur, show some activity and something there, but it could be just inflammation from the cells having died and possible healing. We are very surprised and pleased with how well you have done" (7 November was 14 months out from last chemo and 21 months since dx) Now, I can concentrate on figuring out what is going on in my head. Contrary to what my brother in law says, its not just because it is empty, lol. AS you can tell, I am walking on air!. But I will remain ever vigilant. Dawn

As of my last scans and consult, I am considered (almost completely)NED. For ext-sclc, that is almost unheard of as there is always activity in the cancer cells and if not the masses (My Dr.s don't call them tumors cause they are so irregular in shape and sometimes spread like tentacles instead of being encapsulated ( that's what they tell me)) are still there just with not cellular activity showing growth. AS of Friday, all of the masses in my chest, and the areas of mets (with the exception of my left hip and femur) are no longer there. When I said "you mean they are not longer showing any signs of activity?" ; she said "No, I mean they are gone. no signs on any scans showing those masses. The left hip and femur, show some activity and something there, but it could be just inflammation from the cells having died and possible healing. We are very surprised and pleased with how well you have done" (7 November was 14 months out from last chemo and 21 months since dx) So now we are going to concentrate on what is going on in my head and try to nail down if it is MS or not. (which is my contention as well as the Rad.Onc and the Rad. as well.) I still count all my blessings daily as I know this could turn around tomorrow and turn to you-know-what, but right now I am concentrating on remaining as close to NED as is possible for ext-sclc. Dawn

Lily, I am in tears as I type. Absolutely beautiful! And so true the message. We are having trouble (again) with my youngest son (I won't go into details) and what you wrote is helping me deal with that. What you wrote also brought back to me the very sudden and very unexpected death of my husband 7 years ago. It brought back to me how much what you wrote expressed my very feelings of of our relationship and how things should be and were and also how I have been trying to deal with everyone (including strangers) since that time. My new motto is "be a softer kinder person" because of the very things you have written about. So beautifully said. Michelle, you can do it. Love, laugh, cry, hold and hug each other and you and your son can get through the day. Just as Lily said, love hurts especially when the one you love is no longer there, but as I have learned, when sharing the memories of that love with another the hurt is not as near as crushing when you share it with another who loved your special person as much as you. And you are building wonderful new memories even through the pain and the tears. Dawn

Judy, when I say games, I am talking about the applications on FB/MS. I play several of the farm ones and several different fish tank/aquarium ones Anyway, they keep me occupied when I have watched all of my TV shows on the net. Dawn

Great weather in NTX today as Bud said. Fixing to open up the chat here in about an hour. While waiting on people to come in, I too will be playing my Facebook apps (games) I am a relative newbie to FB as I don't really know how to look people up. We should have a separate forum just to talk about those games, lol. I do a lot of the fish and farm ones (don't really care for the Cafe ones as at one time I used to manage one)as well as mafia, vampire and castle/medievil ones. I like to pretend all the things I am beating up on in the mafia, vampire, and castle ones are all of the different kinds of cancers and visualize them being "iced" (as they say in the mafia games). I learned after my husband died and I had to learn new coping skills to handle panic attacks, that visualization is a good skill to learn and does work. So far my ext.sclc is still at bay, but will find out more on Friday. I am off to log on and play a few games and then open up chat. Ya'll come! Dawn

Chat tomorrow at 11:30. You guys come see me! It sure gets awful lonesome in there by myself Dawn

Randy, I knew Judy was busy with a well-deserved break. I just figured one of the other girls or even you yourself might have gotten up before me (which is not uncommon when I am on steroids as I don't sleep at night). and started it. But I'm not fussing about it, I was just surprised cause I was so late. I am usually up with or before the sun. I would also like to say I would love to see more of your comments as you are always hilariously funny and upbeat. Sometimes, your comments are the first to make me smile and chuckle and that always sets me up for a good day. Dawn

I spent most of the evening on Thursday in the ER with a severe migraine feeling like I was having a stroke. Most of the ER docs at the VA are, to put it plainly, awful. However, this visit I was blessed with one of the best Dr.s I have ever had while in the Dallas VA's ER. She was without a doubt, the most comprehensive person I have dealt with. She asked me for "All of my symptoms even the ones not related to my head and any that were related to my cancer. She made sure to do all the tests that she felt were needed with out over ordering. II had a CT of my head, a chest X-ray (checking my chest to make sure I wasn't having a case of VCS) and x-ray of my right hip and femur ( I was supposed to get one in Aug, but couldn't get up to the VA within 30 days to get it done). She took the normal blood tests (CBC, WBC, etc) and also an arterial draw(which hurts like breaking bones) to check blood gasses The upshot. She thinks the headaches are from MS. All of the symptoms that I had were also symptoms of not just migraines but MS as well as stroke, so she said it was a good thing that I came in, just to rule having a stroke. She said she saw nothing in my right hip and femur and told me "for having ext-sclc your lungs are pristine and I see nothing in your chest that would indicate a cause for or a tumor that would cause VCS" I almost fell off of the bed when she said that. She said that since there is still a mystery about is it/is it not MS or cancer, she put in the record a suggestion of another MRI to compare to the one in June to see if there are any changes. Since I have a Pet Scan scheduled for Monday and a consult on Fri, she strongly worded the suggestion to do the MRI before the Fri consult so that the ONC.s and I could talk about it for possible follow up with Neuro. The only thing I didn't like was that she put me back on steroids, which is why I did not go to bed until about 5 this morning and got up at noon. All in all one of the better visits I have had to make to the ER. Got me in and out to. Was only there about 4 hours. I feel better about my up-coming scan as well. Dawn

Imagine my surprise, to wake up at noon and find no Air yet. AAHH, well, I figured that with the Walk going on today and me stuck here in the house with the remanants of an ER room visit severe migraine, I could start the air today. It's a balmy day today in NTX, just 63 degrees at this late hour of the morning (I know it is technically afternoon, but it still fills like morning to me), lots of sunshine, and a nice breeze. I plan on trying to wash a fur baby or two today (since it stopped raining we have been over-run with fleas) and sweep the floor and then veg out the rest of the day. I hope you all have wonderful things planned to do today to get you out into the lovely weather. Dawn

Steak and or chicken fajitas, rice and beans and hot tex-mex apple pie with cinnamon ice cream on a sizzling plate with hot, thick butter rum suace over the top. Dawn

Hi All, Reminder, lunch chat today starting at 11:30 (CST). Look forward to seeing you there. Dawn

Hi all, The weekly lunch chat has been moved to Wed. for the foreseeable future, as Wed. seems to be a better "fit". The starting time will stay the same at 11:30 (CST). 12:30 EST (Judy, that's you), 10:30 (MST) and 9:30 (PST). This post will be used as this week's reminder that chat is tomorrow. I look forward to seeing you all there. Dawn

Judy, I have the same CRS Syndrome myself, lol. Looks like we may need to change the day. I will talk to Katie. Will keep you all posted Dawn

Debbie, A VATS procedure would be safer for the Docs in the long run as it is done arthroscopically and you loose less blood, decreasing the Docs and nurses exposure. But you still face the risk that they could not get it all and would still have to to do the bigger incission (I cannot spell today to save my life...lol) Also the recovery time is much less and not as hard on your body. It might be worth it to ask. Altho, I have not had laproscopic surgery for lobectomies and such I have had one for a gall bladder removal and a hysterectomy. Much easier and faster recoveries. After the gall bladder surgery, I was back up and running the next day. Hysterectomy took a little longer but really only took about a week with the except to both that I could not pick up anything heavier than 10 lbs. for 6 weeks regardless. Dawn

I also have a Facebook account. I don't use it that much but I think I will put up a post every week this month (or even daily) about November being Lung Cancer Awareness month as Lily has suggested. If it will helpbring more awareness, get rid of the stigma and possibly loosen a few purse strings, you betcha. Great idea Lily and Randy Dawn

Michelle, After my husband died, my youngest daughter who was daddy's favorite, seemed to have a good grip on her grief. Her thought (at the time) was he's in heaven with His mom and my dad and everything was right with the world. It wasn't till a couple of years later that we understood that she was acting out (mainly away from home where we did not see it) in a bid to get that attention back. It lead to her being sexually assaulted by a family member/long time friend of the family (over 16 years) starting when she was 12/13. I had gotten her a little counseling but it was mainly in a school setting when she probably needed some one on one. It also did not help her that her brother was also acting out (had been since before his father died due to other mental issues(ie: severe adhd, opd, and bi-polar disorder)). After the assault, I got her counseling, but she said it wasn't helping her. She talks to me or her older sister right at this point, but I still think, if I can find a way to get it done, that I will try to find her more counseling. Anyway, my point is that he is focusing on you and not his own grieving and needs to be given permission (so-to-speak) to grieve. Talking about your Don and sharing the laughs and tears will help, but a suggestion is to ask your own counselor for a referral for him. It will help in the long run. You might also look into Boy's/Girl's clubs or a mentor program for him. He may not be ready for that just yet, but it is good to have in your back pocket when he is. Dawn

I went into chat Thursday morning, and totally missed all of you! I was there at 11:34 (took my ISP about 10 minutes to connect, for which we have had a serious conversation about, lol) and stayed till about 12:45. I'm thinking that the time is just not right. Do you guys want to move it back or make it later or what have you? I don't mind changing the time if needs be. Also maybe a different day? Also would you like me to put a reminder in the day before the chat every week, just to remind folks? Whatever you guys think, I am open to. I think we can also use the chat anytime, so If you would like to chat in off times you can just send me a pm and it shows up in my e-mail as well and I check that several times a day. Just send me a time (make it a couple of hours if you can before you want to chat) and I will be glad to come in chat. Whatever you guys want to do to make it easier. Dawn

Michelle, Although my husband did not pass from cancer (massive heart attack at age 54, with no prior symptoms and the only symptom that morning a slight burning or tingling sensation in his arm (like he slept on it wrong)), it was totally unexpected. For 2 months after he died, I thought I was going crazy, with crazy thoughts, coming home from work and sitting on the couch just staring out the windows, losing hours of time (have no clue where they went or what I did). I started having severe panic attacks and have 15 emergency room visits just for those. I ate, but don't remember eating or just had one or two bites. I used to have people telling me to eat (if we were out) my dinner or vegetables like a little kid. I got so tired of being told "what you are going through is normal" especially when it was not normal to the person I thought myself to be. I finally checked myself into the hospital. There I learned all about grief and the difference between grief and depression. That is what helped me the most. I learned how to recognized the difference between normal grieving and when the depression got a hold of me. And yes, I also took anti-anxiety and anti-depressant pills. I also learned deep breathing exercises to help when the panic-y feeling started as well as some visualization techniques that helped and I still use many of those same things when that panic-y feeling surfaces with my cancer treatments(especially scans as I am severely claustrophobic, something I did not know until my cancer showed up). I also learned that we all grieve in our own way. I emptied all of Mikey's clothes from the drawers and closets with in 3 or 4 days of his burial and sent them to a Clothes closet in the little town we lived outside of as I could not stand seeing all his clothes still there. I kept a couple of items, like a cordaroy Blazer (that I let my youngest daughter's boyfriend wear to a school dance this last year and actually gave it to her (daddy's little girl)) and some other things like his string (Bolo) ties and wallet (which I just gave to my youngest son recently). One of the reasons your meds are knocking you out is that you need to eat something when you take them. You need to have something in your stomach. Doesn't have to be much, maybe a couple of crackers or a piece of toast. Also, sometimes you have to have your doctor raise or lower the does to get rid of the "zombie" feeling. But sometimes that feeling is just you grieving and not the meds. As someone else said just don't fall in the bottle (of meds or alcohol and please be careful with alcohol and the meds!). They can help tremendously but they can not cure the grief. There is much of the first 6 to eight months after his passing that is still surrounded in a gray, hazy fog, that only my oldest daughter can tell me what really happened. But we all got through it by just sticking by each other and leaning on family and friends. I still grieve for him and miss and think about him daily. But I haven't had a major panic attack in quite a while, even with my cancer diagnosis. Still have anxiety and have had a script for anti- anxiety pills for the last 7 years since he died which I still use and have updated by my Onc. They help me tremendously with just general anxiety, scanxiety, and sleeping. I love my ativan cause it works when I need it too and I can take it as I need it. Be gentle with yourself and your son as he is grieving too, in his own way. Put one foot in front of the other and take it one day, one hour, one minute, one second at a time as you need to. It won't go away, but it will get better. I promise. Dawn

Since it looks like I am up and on the net early than everyone else, I'll start off the air this morning. Got up to 43 degrees at about 8 am...but lots of beautiful sunshine. There is a light breeze that is making my wind chimes sound their melodious notes. I have neat wind chimes as I specifically look for those that are tuned and that you would usually pay a hefty price for, but I buy mine on sale (hint: prices for anything yard, garden and lawn related are on sale on line most of the time, but especially this time of year) I used to have some that were tuned like church bells in different ranges (such as alto, bass, etc.) but they finally broke just before I moved to my present location. I also have another set, like the ones I have out front, but have not been able to find them since we moved. Oh well, I think that is what I will request for Christmas, not that any one here can afford them...lol. But I like the music they make. Speaking of music, since we no longer decorate for Halloween, (no storage space for all the decorations at this house) I miss not being able to do so. We used to do it up with a skeleton keyboard player, fog, tomb stones, green plasma-y looking lights in the front porch post lights and all manner of black lights. On All Hallows eve we would set up the key board player, buy the dry ice to help the fog "juice" hug the ground and flow around the tombstones, with green glow sticks on the ground behind them to add the un-earthly glow and then turn on the music (the key board had a demo mode that allowed the keys to light up in red as they played. We turned the demo musice down, and I had a "boom-box" hidden that play Bach's "Toccata and Fugue in D Minor" very loudly. Over the head to the skeleton key-board, was a sign that read "Lost Souls Tavern. It was great! Here's hoping that your Halloween Is full of only treats and that you all have a great day. As for myself, I think I am gonna dig out my change jar and go buy some candy for the ghosties, ghoulies and goblins. Dawn

It's a beautiful day in NTX, today. 55 degrees, good stiff breeze making my wind chimes sound like church bells and lots of sun. I can let the dogs out to run in the back yard and bark to their hearts content. Have I told ya'll that I love fall? I can see the days marching up to Halloween and Thanksgiving. I try not to look any further ahead than that. Especially since I have scans and consults scheduled for the second week in Nov. My floor is a mess due to the rain and the dogs muddy paws, but I think for today, I am just going to install my camera software and then go sit in the sun and take pictures of my dogs and enjoy the day(chances are, though, I'll install the software and sit right here on the computer and surf, browse and watch TV shows, lol). I hope you all have as lovely a day as I am planning on having. Dawn

Bump!