Outrider1

Hi, After my husband died in 2002, I was a basket case and ended up in the hospital thinking I was going crazy. This was after about 15 ER visits with severe panic attacks which I had never had in my life up to that point. I was put on paxil (allergic reaction). Then we tried welbutrin. I could feel it working, like little sparks in my head just over my left ear but inside. It was really a strange feeling. Stopped that. When I went into the hospital we tried remeron which I took for about 4 to 5 months before stopping because it did seem to be doing anything. I eventually started taking zoloft in 2004 which was the best stuff since sliced bread. It got rid of a lot of the anger that I was experiencing (I was diagnosed with PTSD and major depression due to the circumstances of my husbands death and anger is a big issue with PTSD). Unfortunately, I had to switch to effexor because my body built up a tolerance to zoloft too fast and I had to keep increasing to dosage. Effexor made me a zombie and I just sat on the couch all day watching TV and not wanting to even get out of the house, which is not like me as I like getting out and driving and such. I had a terrible time detoxing off of effexor and actually ended up in the ER with withdrawal after the DR. tried to switch me to another drug that wasn't in the same class as effexor without doing a slow step down. The big thing is that you have to try different and combinations of different drugs sometimes to find the right fit. It is hard because most SSRI (selective seritonin reuptake inhibitors, (paxil, zoloft, welbutrin)) and SNRI (selective norepiniphrine reuptake inhibitors, effexor) take 4 to 6 weeks to become fully effective in the body and that makes the wait for it to really work and for you to notice they are working difficult. After the effexor, I just decided that the chemicals in my brain would get back to normal on their own with out my taking other chemicals and taxing my liver out. I did however learn some really good coping techniques that I use often (especially since with my cancer diagnosis, I have found out that I am extremely claustrophobic...lol. If it's not one thing it is another.) I also have a standing prescription for Ativan (generic lorazapam) which is an anti-anxiety pill which does help. I take that as needed and have yet to need it with my PET scans and radiation treatments (although I had to have conscious sedation (or twilight sleep) to endure an MRI...durn claustrophobia!). If you would like some help with some coping techniques, just let me know, I'll be glad to help. Just know that there is nothing wrong or bad with trying medication to help. If you need them and they help you, take them. Just know the side effects so that you can keep your doctors informed and especially do not take more than recommeded or stop them without doctor approval and instructions. Also know that letting go of a lot of the stress by talking, journaling or blogging or coming here to vent is probably one of the easiest things you can do to help yourself, especially here with people who know exactly what you are going through and can help. If there is anything I can do to help you let me know. I will be glad to give you some ideas on where to look or with what I know, to help make this easier for you. Dawn

I have been looking for a place to come with concerns and for some support, mainly to give my 24 year old daughter a break. She can't do it all and it is a shame that it took me having cancer to show me just how capable she really is. After my husband died suddenly and very unexpectantly in 2002, and I fell apart she took over for a while till I could pull it all together and she was just 17 then. Shes a keeper, that one. As far as friends they must have just been only my husbands friends as they all seemed to disappear after he died and as I have not really been in job market, I have just not made any new ones. But I am trying to change that. Family? Since we are military brats, for a while we were all spread to the four winds, but now however, my mother lives in GA with one of my sisters (she si 72 this month and still working as a nurses aid (my mother, that is ). My brother and his wife live in GA near Atlanta which is north of where my mother lives and another sister (really my daughter(which would maker her my baby sister), but adopted by my mom and dad....a long story) lives pretty close to my mother. My younger sister, who is another of my rocks lives in SC. She would be here now, but as I know the hardship if would create for her family, I said no. She will be here when I need her, but that time is just not now. Anyway, thanks for the welcome, I look forward to meeting and getting to know you all. I truly meant what I said about getting together for a glass of tea or coffee, however it would have to be at the first of the month when my pittance check arrives. But the offer stands here at the house. We make a mean iced tea here and the coffee ain't so bad either. We can sit outside and watch to dogs run and drink tea and enjoy the little things in life. I may try to make the support groups...if only I could find Trophy Club...lol Again, thank you Dawn

Just a note about Social Security. All lung cancers are considered permanently disabling by the Federal Government and SSA. As a matter of fact I can't think if any cancers that are not on the list. The list is available in their webpage. Apply for SSI (Supplemental Social Security insurance) and SSDI (Social Security Disablility insurance) at the same time. The ssi starts immediately (if you are qualified, ei. make no or very little income) and comes with medicaid. The medicaid disappears for 24 months when you start to receive the SSDI with has an (arbitrary no reason for it) waiting period of 5 months and you do not get any back pay for the months you wait or if receiving SSI the difference in the two. I had a nationally know law firm tell me that you have to be destitute to get what the federal government deemed by law that you have to contribute to. And they were not lying. I know from experience. SSI is a pittance (I got $637 a month...tell me that is enough for a household with a 16 year old and mother with cancer). My disability is not much more, which is ridiculous considering how much I have paid in since I was 16 years old, served in the military ( a lot of people that have not served do not know that military members pay the same taxes) and worked my butt off and realistically speaking not expecting it to be paid for the next twenty years. (Not being a downer, just realistic. I would love another twenty and will take it anyway I can get it with or with out the Federal government's help) If he is able, he needs to make the claim himself or ensure that you have power of attorney to do it for him as it will just make it much easier. If you need other assistance of any kind from financial, to insurance to just about anything, here are a few places I either visited on the web or spoke to on the phone. Any Cancer Treatment Center of America. The counselors on the phone have tons of website resources at their fingertips that they will give you. They will e-mail the entire phone conversation to you so that you have all that information. United way is only good for telling you about the local services available in the state. That is all that they do and they do not have a complete list. It can still be a help as they may have something listed that no one else dose. Contact the Health and Human Services dept. and the Aid for the Elderly and Disabled Depts. of your state. They may have additional programs I also believe that Lungevity has a links page as well as the folks over at the Lung Cancer Alliance page. Don't bother to go to the ACS (American Cancer Society) except for very basic information on the types of cancer and possible care supplies. AS far as the information part of it...excellent idea of taking a notebook or a recorder. I would take the recorder as it is hard to takes notes in that setting and with the recorder you rewind and play back anything that you don't hear or understand for further research. Be very pro-active. If you don't understand something make them explain it and don't take no for an answer. If you still don't, get another opinion, and another and another until you understand it the way that you need to. These people are being paid (one way or another, insurance, medicaid/care, out of your pocket, whatever) and they work for YOU. They sometimes forget that. If you do research on the internet,DO NOT read and believe the statistics. The majority of cancer statistics are 20 years old and as cancer treatments have really changed with in the last 5 to 10 years there is not enough data to support new statistics. Statistics also do not take in to account every person who does not fit into the average. They are an average of all treatments and all people. Also be reminded that statistics can be and are manipulated to show certain things (I learned that from a college course in theory and statistics) that the researcher wants and are therefore suspect. Take all statistics with a large grain of salt. When you do research on various treatments, modalities and types of cancers try to stay with independent, verifiable sites. By that I mean stay away from the sites subsidized by the government or large pharmacuetical companies such as (unfortunately) the American Cancer Society and the National Institutes of Health. Independent researchers do not have to toe the "Party line" so to speak which means that they can, will and do publish findings contrary to the majority that may be of value and that they are publishing based on the interest to helping and not motivated by how much money they can make. A word of warning, there are a lot of sites out there that seem to be legit, but are not. If it seems like a miracle cure or to good to be true, they are probably just that. A way to part you from the little money you have. You can verify the information by looking for material the has been published in well know medical journals and air on TV such as Discovery health (just remember to back up what you hear with written accounts in the journals). I was diagnosed with SCLC (small cell lung cancer) which is virulent and spreads like wild fire. If I had laid down believing what the statistics say, I would probably not be here today. I decided right then and there, that statistics were not going to define my life and I was going to do whatever it took to get whatever time I could and damned the statistics. And that is what I am still doing. Your best friend is not a statistic and don't let anyone, doctor, friend, stranger, treat him as such. He is a human being and therefore that makes him worthy of being more than a number. This website is one of the best at giving thorough and correct information without espousing gold standards of treatment and care (there are no gold standards as nothing works for everyone and you have to try as much as possible to find something that works) and for the loving, caring, non-judgemental support. These people are absolutely fabulous and will help you in any way that they can. If there is anything I can help you with just feel free to ask. Also please know that, although I may seem a little abrupt (in your face may be a better way to put it, lol) and a downer; that I don't mean to be. I have an aversion to giving false hope and am committed to giving as much correct, up-to-date information as possible as realistically as possible. I am living proof, as are a lot of people on this site. that what the statistics say are bunk. Be pro-active, try to stay positive and if you need some support in that, visit here. Dawn

Oh and NEd, One other thing, I was born at Tripler Army medical center in Honolulu. I am an Air Force brat as well as being a Navy vet. My dad worked in the Kaliea (sp?) Tunnels, up around the big Cross on the pass. WE left when I was in second grade ( after my dad's second tour there, first tour he worked at Hickam field) and I still remember that. Dawn

Ned, Carboplatin and etoposide infusions and etoposide pills for two days after the infusions. I had very little side effects other than some nausea after the first round. And off course all of my auburn hair falling out. It is coming back in now, but much darker brown and more than just a little grey. And here I was hoping it would come in curly, lol. My knowledge comes from much research and asking tons of questions after feeling like a science experiment gone wrong. I thought a little knowledge would help get rid of that feeling. Alas, I still feel much like a science experiment, but have determined to make it a positive experience. If it worked so well for me, maybe it can for someone else and the only way to figure that out is for them to keep doing what they are doing. I have been to West! My deceased husband was a truck driver and he said the best place in Texas to get the best kolaches was in West and one day he had a hankering for kolaches, so off we went. I currently live in Mesquite just south east of the Dallas city limits. When I was diagnosed I lived in Richardson, just north, north east of the city limits by about two blocks. However we are not only part of the cancer statistics now, we are also part of the statistics of the economic turn down and the mortgage crisis and had to move, so here we are. I wish I could help you with the time warp...wait ...let me do some research on it. I'll get back to you . I look forward to talking to all of the members in the forums. Thanks for the "Howdy" Dawn

Hello, I have been lurking for a month or so and thought may be I better introduce myself, so you all would not be wondering who that stranger is. My name is Dawn and i am a 49 y/o (50 in 11 days) widowed navy vet with 4 kids (M25, f24, m18, f16) three dogs and a cat. I live in North Texas and have been dx with SCLC (May 08). I have under gone chemo (once every 4 weeks for 6 months ) and have had at this point 3 NED scans since Oct 08. I have just started PCI as of today for the next two weeks and will be doing another PET, CT and doctors appointments in early June. My SCLC was discovered after I had a CT done to figure out why I was having such pain in my back and difficulty walking. They diagnosed (believe it or not) diverticulitis as the reason for the back pain but stated that they saw a lung mass. So I was then fighting with the VA to get an appointment in the next week or two instead of two months down the road to get the lung mass seen to. My PC Doctor gave more antibiotics for the "diverticulitis" , an x-ray and set up a pulmonary function test. The x-ray showed the mass, so a bronchoscopy was also order. The PF test show that my function was fine, but the bronchoscopy showed SCLC (they took a biopsy while they were in there). While waiting for the results of the biopsy, I saw my PC for the "diverticulitis" as the antibiotics did not seem to have cleared it up. He never once said that he felt the problem was caused by metastasis of the cancer. It was almost like he could not bring himself to say the words. By the time I actually saw the oncologist, I was being wheeled around in a wheel chair due to being in so much pain that I could not walk, sit, stand, or lie down except on my left side. I couldn't even climb up on to my bed. The oncologist told me I needed to start chemo right away and actually had to talk to me in the waiting room as that was the only place that had a flat couch that I could lie on. We didn't discuss too much at that point other than getting my pain under control and starting chemo. I started chemo the next week. Within an hour of the infusion I could walk, (not well mind you but I could motivate under my own power.). I also found out the my cancer had metastasized to my left femur, hip (on the back wall of the socket joint) and lymph nodes, left seventh rib, spine near the tail bone, left cervical lymph node, right axillary (armpit) lymph node, right lymph node under the jaw. After the second month I no longer needed the walker I had to buy, so it now resides in the closet for if ever. I look forward to meeting all the members on the forums. And if anyone lives in the Dallas area would like to get together around the first of the month (when my disability money comes in and I have a couple of dollars) getting together somewhere for a cup of coffee, or glass of Iced Tea sounds like a heck of an idea. Dawn

Annie01, PET scans show metabolic activity at the cell level. They use a radioactive glucose solution that is put into your veins via an iv tap (iv- intervenous , tap-just to administer the solution and nothing else and removed immediatly after giving the solution) The radioactive part shows up on the scan as bright white spots. The cancers cells use a tremendous amount of glucose to multiply and divide. The spots that show up in areas of the body other that the brain, skull and the bones, indicate areas of possible cell multiplication and growth. A PET scan scans from the eyes to the thighs because bones and brain also use a tremendous amount glucose. Actually glucose is the "fuel" that your brain uses to function normally. Since the brain is surrounded by bones of the skull, the brightness of those areas can not be used as a guide in cancer diagnosis. That is why they use an MRI. REmember, that all the diagnostic imaging test have separate and distinct functions. X_rays- scan bones and very dense soft tissue such as masses or tumors but only show details for the bones. CTs- show more detail of the bones and dense soft tissue masses or tumors and pick up less dense soft tissue masses or irregularities MRI's show much more details of all areas especially when give with contrast. PETs show cancer growth by show activity of masses or tumors. Sonograms show soft tissue masses and tumors and pinpoint more precise locations and size and shape All of the test show location, size, and shape, just some show them in better detail than others. Now the forgetfulness. It can be just a normal sign of stress. She has so much information that is being given to her, she maybe overwhelmed by all the information at a time that she is having to also consider life altering events. Having been diagnosied with small cell lung cancer, I know how overwhelming all the information is while trying to digest that I have a terminal illness. It was especially hard before they came up with a treatment plan and I was worried if I was going to drop dead tomorrow. Once you come up with a plan and start acting on it, mom may be better. It may help to slow the information to only what is immediately needed to determine treatment and get that going in the right direction, then add information as you see she can handle it. For the downside of the forgetfulness, it could also be signs of metastasis to the brain, which can be treated. That is why the Dr. wants and MRI. Lung cancer, especially likes to migrate to the brain. I feel (and this is my opinion not based on scientific fact or certainty), that lung cancer uses a lot of glucose and migrates to glucose rich environments such as the brain, and the adrenal glands. But the major thing to remember is that metastasis to the brain can be treated and treated well, depending on the stage of progression. The smoking. I hear you, in my family we are all kitchen sitters, gathering around the kitchen table to talk and share our lives. No one smokes in my mother's house because my father smoked and when he quit we just all started going outside to smoke. My mother made the request so we did; no muss no fuss. I would not bring attention to the fact that you are not smoking as it will bring attention to the fact that she is (if she still is), which will make her fell guilty, which is something she doesn't need right now. If she asks just tell her it is your way of fighting her cancer for and with her and leave it at that. It may just give her the added strength to quit, especially as she sees that you will not judge her either way. I really commend you on stopping. I know how hard it is. General information: this will be on the treatment side of things. One thing I have seen talked about a lot is the side effects of chemo and radiation. Problems with sores and thrush in the mouth. The one thing everyone talks about is that nasty concoction they call Magic Mouthwash. It has several ingrediants, one being liquid lidocaine. There is no way to disguise the awful taste of lidocaine. Many people swear by this stuff, but I found yogurt (the kind without fruit pieces) to be much more palatable and just as effective. It will also clear up the thrush which is a yeast infection in the mouth commonly seen in infants due to new unsteralized bottle nipples. The main thing is to keep her pain (if she has it)under control and work with the doctors on that. Do not worry about addiction, it is really a non-issue in this instances. Be supportive as possible. This is not the time to fuss about things that she has no control over (such as smoking or forgetfulness and I am not saying that you would, but others may), or any of that. This is the time to band together and fight the beast (cancer). as well as you can. Also remember, as long as she is capable, all things are her decision but she might need help and reassurance that what she is doing is the right thing. Cancer may have involved you all, but it is physically happening to her, a lot of confusion, questions and decisions go with this ride, and sometimes we need help to think them out first. I go to my oldest daughter with those type of thoughts all the time. The last thing, you and all other family members need to remember this cancer has involved you as well and you are having to deal with it from the sidelines, which is not easy. Remember to take time for yourselves,. be gentle with each other and your selves, as this is a hard road but one road that you can get through with love and understanding. I'm sorry this is such a long reply but I wanted to cover all of your questions from someone who is like your mother, physically having the disease. I hope some of it helped. Dawn