Debaroo

Michelle, Hi-I'm not sure if you've read any of my posts, my dad was diagnosed with NSCLC in January 2002. Seeing as how the lung spots are in remission, have you looked into Gamma Knife for the brain mets? Unlike full brain radiation, Gamma Knife Kills the brain tumors and they are then reabsorbed by the body. You didn't mention how many brain mets or their sizes. Gamma knife has been around for decades and is becoming more widely available. The center my Dad went to last month just opened in June of 2002. Dads oncologist never even mentioned it to us when the brain mets were found in December, I knew about it from this board and knew that when it came to brain mets, Gamma Knife was the route we would go if it were medically possible. Fortunatly the number and size of the tumors were well within the range of making him a candidate. We told dads oncologists what we were doing, and cancelled the radiation appt. Unfortunatly, not many Oncologists realize how much more available this procedure is. As I see it, if she still has brain mets, the swelling they cause may be the cause her difficulties in walking and the blurred vision. The decadron helps reduce the swelling and thereby reduces the syptoms, however it being reduced in dosage would not help the swelling. I know it is alot to take on, but if you could find out if GK is available and get her to a neurologist that does it, they would be able to do another MRI and determine if she is a candidate. If I were you I would schedule another MRI ASAP. I scheduled my dads myself, because when his oncologists office scheduled it we would have had to wait another week for it, thus prolonging any treatment and also opening him up to the possibility of more brain mets or the ones he had to getting bigger. Is it possible for you call her oncologist yourself, seeing as how your mom won't. Sometimes we have to take on a bigger role in things when the ones we're caring for won't do it themselves. If she is feeling so badly, she may just not be up to it. I will keep you and your family in my prayers, and please keep us updated on whats going on. I know its hard, and its good that you came here to vent and get information and support. Please take care, Deb

Bill, I am so sorry about your loss of your mother. This message board isn't just about giving stories of hope, it is about giving support when someone needs it most. Please know that you are in my thoughts during this difficult time. I hope that you will find comfort in your memories of your mother. Please take care and if you feel at all the urge to post again, I hope you will do so, as so many will be thinking of you. Deb

When my dad was put on decadron, it didn't take long before he got serious heartburn. When we saw the neurologist, he gave dad a perscription to counteract the heartburn because it was a side effect of the decadron. He said that if we hadn't said anything, dad would probably have gotten an ulcer. I was annoyed that the oncologist never said anything about it when he put him on the decadron to begin with. The neurologist said that it is a very common side effect, and that it could be excruciating. I'd give the docs a call and ask them to phone in a perscription, I don't remember the name of Dads perscription off hand, but the meds Rosanne mentioned sounded familiar. Good luck. Take care, Deb

Renee, I'm so sorry that you have to bare all of this yourself. It sad that your moms family don't think about the future, and the guilt and sadness they will probably feel if they don't take the time to be with her. I think one of my biggest fears since childhood was that I would loose someone that I loved very much and not have taken the time to show that love. As for the decadron, I posted about my dad, he was cranky and he ate ALOT! He is down to less than half the amount he was on right after the gamma knife, so the symptoms are starting to wane. As far as the Taxotere, Dad was on that as his last line before Iressa-which is his current treatment. In all my Dad never really had many side effects from chemo, mostly he was tired. However, we did have him on Maitake Mushroom pills, flax seed which are supposed to help keep side effects of chemo to a minimum and aid it as well, and his diet was much more strict practically no sugar. These may have had to do with the fact that he experienced very few side effects, I really think they did. Keep up the good work, your mom is so lucky to have a daughter like you. Anyone would be lucky to have you in their corner. When all is said and done, you did the right thing by your mom, and you should know that. As for your moms friends and relatives, good luck to them-they will have to live with whatever guilt comes. Take care, Deb

Alyse, Let me start by saying that I am sorry that you and your husband are going through this. My dad had gamma knife on January 9th of this year. He had 3 mets to the brain (NSCLC). When my sister and I researched lung cancer upon Dad's diagnosis (Jan 2002) we had decided long ago that if/when it metastisized to the brain, we wanted to get him Gamma Knife if he were a candidate for it. We met with the neurologist on December 31st, we brought the MRI films so that he could see them. From what he told us our dad was a definate candidate because: he didn't have more than 5 tumors-they had done GK on as many as four, but more than that would require possible surgery or another procedure, and also the three mets were less than the maximum of 4cm. (one was 2.5cm one was 2.0 and the other was almost 1.0cm). That being said, we were also aware that (and expected) by the time dad went in for the GK there may be more mets, and the ones he had would probably be larger. Thankfully, the three stayed the same size and there were no other mets. Gamma Knife has been around for a couple of decades and has really been perfected and is becoming more available. The two hospitals on Long Island (where we live) just opened their centers in June of 2002, so we lucked out. It has a 98% success rate, and, unlike whole brain radiation, kills the tumors-which are then re-absorbed by the body. The re-absorbtion happens at the same rate that it took the tumors to grow in the first place-since Dads were slow growing, they are re-absorbing slowly. A steroid is perscribed before, during and after GK is done, as the brain swells more after GK, but than goes down. Gamma Knife is radiation at high and precise doses. Dads procedure went as follows: 1. met with neuro sergion 2. the next week met with radiologist and had GK explained and scheduled GK procedure 3. Dad went to hospital (only required a one night stay!) early in the AM and had a double grain MRI done which is than read on a special computer that showed his brain in 3D- this allows the neurologist, radiologist and nuclear physisist to see if there are any sprouting tumors they need to address and also for them each to calabrate what they thought the dosage and route should be taken. the calculating can take several hours, and is really the longest part of the procedure. Each doctor had to come up with the same exact calculations. In the meantime, after the MRI, there is a piece of headgear that the patient has to wear that gets screwed to the head (the screws do not penetrate the skin, but do leave a mark and can get sore after all is done-my dad had no problem with this. At this hospital the neurologist is the one who puts the headgear on, because if it is wrongly applied it can cause damage to the skull, so a neurologist should be the one who puts on the headgear. the headgear is like a frame and then when the dosages are set another collandar like helmet gets attatched to the headgear, which weighs six pounds. It has holes in it and specially fitted "corks" that close holes not needed, and then the ones needed for the procedure are left opened. There may be alot of getting up and down, depending on the number of mets being treated. Dad was very tired, due to all the up and down and the long day. I know there are different computer programs, the most advanced one allows for almost zero error for any under or over dosing of the radiation. All the dosages of radiation are entered all at once, which makes it more accurate and timely. The only reason for the getting up and down is that the "collandar" that I mentioned may need to be changed to one with different sized holes and calabrations (since dad had 3 tumors it took a couple of different "collanders". The whole thing is very HIGH TECH and very accurate. The nurse in charge of the GK where my dad had it done showed us the machine (it looks like an MRI) and the collandars and explained every detail of how the day would pretty much go. Since dads tumors didn't grow and there were no changes, it made the calculating of the dosages, etc. faster. There are virtually no side effects, some people experience some of the side effects that regular whole brain can cause, but the side effects are much less. I read an article in a medical magazine about a woman that went from California to PA to get GK, she was diagnosed with melanoma, she was an avid runner, but hadn't been able to run due to the symptoms of the brain mets, the DAY AFTER gamma, she ran 5 miles. The GK nurse told my sister about a woman that went to their hospital, she had been bed ridden for weeks, the day after GK she walked out with a cane. I hope this was of some help to you. There are websites online that even show the GK procedure, but I can't get the "film" to run on them, my sister ended up doing it on her computer adn telling me about it. I just would ask if the facility that you use has the latest computer programs for the GK, a private company owns the rights to the technology and the hospital pays for it. And also ask who puts the headgear on, since it gets screwed to the skull and it is a delicate thing-it can cause injury if not applied correctly and is screwed on the wrong spot. Our experience was a very positive one, everyone explained the technique very well, and my dad was facinated by the technology-which helped. He was even told to bring in his favorite music CD, as they play it during the GK in the machine, he didn't have one, so they picked one for him. He slept during the whole procedure! the only anasthetic is a topical one for where the headgear is attatched. If you have any other questions, let me know. I hope I hit all the areas you were looking for. Good luck, I will keep you and your husband in my prayers. Keep us posted. Take care, Deb

Hi Cathy, although I am sorry that this website is necessary for you, I must say that it has been a big help to me and I think you will find it is a great place to come to for information and support. My dad has NSCLC, extensive stage (mets -metastis' to his spine and he recently had 3 mets to the brain-which we believe were taken care of with gamma knife), he was diagnosed in January 2002, and is doing pretty well. He started Iressa and we are hopeful that it will either slow or stop the disease from further progressing, or that it will "melt" it away. We'll find out in a month how it is working for him. Anyway, I just wanted to welcome. I truly believe that a positive attitude will work in your dads favor, so if his mind set is the same as yours, he's got a big plus on his side. You didn't mention, when was he diagnosed? How is he handeling things? If you have any questions or need to relieve some stress, this is the place to go. The people here have been truly wonderful, and I know that it has helped me to have this board to turn to. It has helped my dad because I've gotten some very useful information and advice as well. Well, take care, Deb

Hi Renee, I was just wondering how your mother is doing? I know that you posted that she was doing better since she was taken off the neurontin, and you were going shopping together . I hope you guys had fun! Just wanted to see if you had any updates and to let you know that I was thinking about you and your mom. Take care, Deb

Hi Deanna, welcome to the board, although I am sorry that this has become necessary for you. First things first. When my dad was in the hospital for food poisoning an x-ray proved no blockage in his stomach, but showed a mass on his spine. This was an incedental finding. My fathers primary care physician, also NOT AN ONCOLOGIST, said, and I quote "I am sorry, your father has metastatic pancreatic cancer, there is nothing we can do" when we asked about chemo, he shrugged his shoulders and said "Huh chemo, eh, you can try, but theres really nothing that can be done" Needless to say, my mother sister and I were hysterical. For 2 days we thought, this is it , Daddy will die in a matter of months. Then I met with the surgeon assigned to my dads case (south side hospital in bay shore) who showed me results in a CAT scan that was done after finding the tumor on the spine. He showed me a small mass on each of Dads lungs and said, " we have to find out what this is" I told him exactly what Dads primary care doctor said and how he said dad definatly had metastatic pancreatic (now I sound like Jessie Jackson- sorry for the pun) cancer and how his days were numbered and there was nothing that could be done. The surgeons response was "No offence, but that is BULLS---, unless you have a tissue sample you don't know WHAT you are dealing with, and I WILL GET YOU THAT TISSUE SAMPLE. Without a biopsy, you know nothing. You can guess based on the shape of the mass what it MAY be, but without a tissue sample you know nothing." Thank God for him. A needle biopsy of the spine showed metastatic lung cancer (at first thought to be small cell, but it is non small cell). Dad was diagnosed in January 2002, and is doing pretty well. You are right to be angry. While the pulmonologist may have a basic idea of what the masses' MIGHT be, only a biopsy can tell conclusivly. My dad uses the oncologist from South Side, we have found them to be very helpful and respectful of our constant questions. I am particularly fond of Dr. Gold.. But Sloan is where we wanted dad to go, although they treat basically the same. Sloan sees more lung cancer patients in a week than the others see in a year. Go with where you are comfortable. What I liked about dads oncologist is that I called him to ask if he believed in giving time lines (I didn't want one given to dad because I felt that his mental attitude would be crutial in how he responded to treatment) he told me that he dosn't believe in timelines because "I am not God". Also, he told Dad that if he was still smoking (he quit 10 years prior to getting sick) to stop immediatly, to aid in his response to chemo. If you get the vibe that Stony Brook is the place to go, than do that. You, and especially your mom have to be comfortable with the treatment center you choose. Stony brook is a great hospital. Please feel free to e-mail me whenever you need. I will answer as many questions as I can, and there is ALOT of experience on this board. Alot of SURVIVORS, alot of advise and support to be given here. This board has been a Godsend to me. Please keep in touch, get the biopsy ASAP and as far as that pulmonologist goes, tell him he's fired and never to expect to see you or anyone you love there again! Try to take this thing one step at a time. The biopsy being the first step. Also, be prepared, if they do a needle biopsy and it comes up negative, they will probably want to follow it up with a more invasive biopsy, since a needle biopsy may not get an accurate sample of the tissue that they need. Again, feel free to e-mail me, as Dave said, we're not doctors here, but we can share our own experiences and being from Long Island, I may be able to give you a hand. Please keep us posted and try to keep your chin up. There is much that can be done for your mom if she gets a lung cancer diagnosis. Try to remember that. Take care, and keep in touch, Deb

Tami, I am sorry to hear about your mothers death. I hope that you find comfort in your memories of her, and that she is at peace now with your father. -Deb

Ok, I am a moron. I went to the chat room and was greeted by donna g, I went to respond by typing and NOTHING HAPPENED. I felt so bad, I felt like I gave a snub on the thing. I kept trying to figure out how it works and how to post on it, (and the whole time I'm , like, talking to the screen saying "Donna, I'm trying to respond, I dont know what I'm doing. I'm so sorry, I AM NOT SNUBBING, it isn't a snub, I don't know how this #%$@!*#% thing works!"). Could someone please explain how this works so that I don't end up unintentionally snubbing someone again?! I feel so badly. Donna, if you get this message, please know that I TRIED to respond to your kind greeting, but I am a dumb a**. Please help me out here. Thanks. Take care, Deb

Tiny, I couldn't even stand on my head, so you're "ahead" of me. (sorry for the bad pun ) I'm glad to see you posting again, Its been a while, and I've missed you. Connie, thank you for the heads up about the celebrex, I'll have to keep my eye out to see if I find anything regarding the problems LC patients have had with it. It's weird, my dad has said that he'd be a guinea pig if need be, if it means a chance at a possible cure. And yet the problems that could occur with something new can be scary, because you never know when they can occur, or what they could be. Don't worry about the "chemo" brain, I've STILL got pregnancy brain (and unfortunatly a tiny bit of the physical residual as well) and my younger daughter is almost 27 months old!! Oh well, the gym seems to be helping with the latter, but my brain is on it's own, which is kinda scary. If you happen to remember, please post. Thanks, again. Take care all! Deb

Its amazing how each oncologist has his/her own idea of what could or should be tried. It's like they each have their own "comfort zone" and don't want to cross that barrier. There have been several things that my sister and I approached my dads oncologist with ie: the maitake mushroom and flax seed to help aid the chemo-which we had dad take anyway and the side effects from chemo were so miniskule-so maybe it worked), and aids in relieving side effects of chemo, or even the whole celebrex thing. He said "uh, well we don't like to use these types of things as they've not been proven to work." And I'm like "DUH, well if it hasn't been proven to work, has it been proven NOT to work?" He said it just hasnt been proven to work, so they don't use it-which was really annoying. I understand that sometimes herbal supplements can cause much harm, so you do have to be careful. But It 's so frustrating, because sometimes it just seem like the Dr's don't want to expand their minds and do the nutritional thing as WELL as the conventional thing. If we come across an article or something that someone here has posted as having a positive effect on someone, we still bring it to his attention, even if he does think we're a couple of doofuses. I swear, if I read that standing on your head singing the "Star Spangled Banner" backward worked, I'd tell dad "if you're up to it, give it a whirl" I mean, if he's game, what the hell, right? Take care, Deb

Last January when my dad was diagnosed (extensive NSCLC) All I could think of was that my two daughters wouldn't remember their "Poppy", and how much I wanted them to have him around as I STILL have my 85 year old grandfather around. But that was a year ago. I have learned to try to take things day by day, and keep up on his condition so that we could nip any further metastis' in the bud. And I always make sure to hug him alot and let my kids see him as much as possible (assuming they're not sick, because during chemo his resistance to infection was really low). I am sorry that you have to go through this, and I know what you mean about friends not being comforable bringing up your dads condition. They probably are just afraid to upset you. Having this board to turn to has been a true Godsend. I have not only gained alot of insight into Dads disease, but have found alot of comfort and HOPE on this board. I hope you find the same. You will be added in my prayers. Take care, Deb

Renee, I'm so glad for you and your mom! It's great that it turned out not to be brain mets. As far as the depression, maybe the doc can perscribe a different anti depressant. There are alot out there, and different meds work for different people. In the mean time, you are doing the right thing by your mom, so be proud! I'll keep you in my prayers. Take care, Deb

just wanted to take a general poll to see if everyone thinks its worth while to "make some noise". Deb

Fay, I will say a special prayer that you get a good report about your mom. Let us know what happens. Good luck. Take care, Deb

Renee GOOD FOR YOU!! I know it is very difficult to go to a doctor and make demands, because we tend to hold them in such high regard. But using the fact that this is your mom as a source of strength must help alot. You did the right thing. My sister and I keep reminding eachother to remind eachother that we are doing all we can for our dad. You are doing all you can for your mom. And no matter what happens, remember that conversation with the doctor and the effect it had-it got things done! Like I said, maybe she dosn't have brain mets, but the sooner that is ruled out the sooner they can move onto the next thing to help your mom. And remember, if there are brain mets, there is something that can be done for them. Keep in mind that doctors are only human like the rest of us, and they can make mistakes just like the rest of us, both technical and judgement mistakes. My dad was misdiagnosed at first. It is our job to keep them in line, THEY WORK FOR US! And just like you or I could be fired for not doing our job, we can fire them if they don't do theirs! You are a good daughter. I guess that now it is our turn to take care of our parents just like they took care of us for so many years. Keep us posted, and I will keep you in my thoughts and prayers. Take care, Deb

Renee, Please forgive me but I've forgotten, does your mom have NSCLC or SCLC? When my dad was diagnosed (orig. SCLC-extensive stage which means stage 4) then it was changed to NSCLC extensive- it was still considered advanced which pretty much means stage 4. He underwent chemo, which the cancer never responded to because it is generally SCLC that responds. I'm not sure why the oncologist are NOT treating your mother. Whether it is SCLC or NSCLC, why did chemo stop? I think I remember you posting that she was having alot of side effects from chemo, but there are many different combinations of drugs. -yes the dizzyness is normal-if she has brain mets. I'm not sure why they wouldn't look into radiation or something, and even steroids to help relieve the swelling the tumors cause, thus reducing the dizzyness, etc.. Please forgive me for asking, but how does your mom feel about it? Did she refuse treatment? I'm so sorry that the doctors don't seem to be communicating with you. Were you able to get the referral for new doctors? Please keep us posted. I will keep you in my thoughts and prayers. And if your mom is up for it, maybe another doctor could give you more info. and offer a different approach. Take care, Deb

Renee, Get your mom in for an MRI ASAP. My dad showed symptoms similar to this and we got him right in for an MRI which confirmed 3 brain tumors. Lung cancer commonly spreads to the brain. There is much that can be done for brain mets. Also, when we called dads oncologist (christmas day, we called the emergency number) he called in a perscription for steriods to reduce brain swelling-which causes the dizzyness and whatever symptoms that happen. It is the swelling that causes symptoms and depending on where the brain mets are the symptoms can be different. Speech patterns, etc. can be affected. My dad was so sure the cancer hadnt spread to the brain because he never had headaches, but headaches are NOT usually a symptom. I don't mean to scare you, but the sooner it is checked out the better for your mom. If an MRI dosn't show brain mets, then they can check the next possibility. My dad had a procedure called Gamma Knife, it is NOT a knife, and there is no cutting involved. What it is is a concentrated radiation therapy. It is very high tech and only works on the brain tumers, leaving the healthy brain tissue alone. Therefore, there are barely any side effects. It is very effective. If you would like more info. please e-mail me. I first heard about it on this message board (the original version) from a woman named Kerry, whose father had it 2 times within a few years. We looked it up on Yahoo and found 2 hospitals where we live that do it (long island), and they had only opened in July-so dads oncologist didn't know about it. The procedure is not new, just more available. It has been perfected over the past 4 decades. There is always whole brain radiation as well. But the sooner this is checked out, the better. Also, I scheduled the MRI myself, because if I went with the appt. the doctors set up it wold have been a week and a half later than when I got him in... I simply called the hospitals radiology dept and explaind how concerned we were, luckily the woman said "can he come in now?" and he did. Please keep us up. Good luck. Take care, Deb

My dad was diagnosed in January-orig. with SCLC, but in October when he had a follow up CAT scan that showed the chemo was ineffective, but the tumors (L Lung 1/R Lung 2, mets to spine-which shrunk enough to relieve pain) had grown very slightly. The oncologist was confused, because Dad looked so good and felt so good, so he ordered another biopsy-first one was a needle biopsy of the spine, this time he ordered a needle of the lung. It came back this time as NSCLC, so this enabled him to go on IRESSA. Just before Christmas he showed signs of brain mets (really poor coordination, he kept bumping into things and when he ate he had a hard time getting the fork to his mouth-very scary. MRI showed 3 mets. He got Gamma Knife on Thursday and went home on Friday. Now we're waiting to see what comes up next. Its like your always watching, so you don't miss anything that needs to be taken care of. I have decided NOT to keep wondering whats next, and when something pops up-we'll do what we can to take care of it. Otherwise its like living in fear waiting for the other shoe to drop, which is pointless. We have to take each day as it comes, as much as you want to know what the future holds, you just can't. Which sucks. So all I can say is that it has helped me to cope by just being sure to tell him I love him, letting my kids see him ALOT and reminding myself that we thought he would have succomed to the cancer a LONG time ago, or been really sick from the treatment. So, on the good days we take full advantage and on the bad days we take care of business. My thoughts are with you all. My dad figures that whether he gets a year or two, who knows, there is so much research going on that if he could hold out a year or two, by then there may be a cure or something that will get him more time. He said he'll be a guinea pig if thats what it takes. He's game. And if he could handle it so well, who are we to sit around feeling sorry for him or ourselves? My mom asked me "why your father, he's such a good man." I said "why ANYONE? Noone deserves to get sick. What, would you wish it away from him and on someone else? You can't, it's wrong. Unfortuantly good people get sick, it dosn't work out that the 'bad people' of the world get sick and the good don't. But the good people have a great advantage- good people have loved ones to help them through it. Good people have God on their side. Even the ones that don't believe it, they have people on this board searching for answers and support, prayers and hope. We are the good guys. Take strength in that. Lean when you need to lean, and offer support when it is needed. We're in this together. Take care, Deb