barbaraSanAntone

Hi Barb, sounds like your dad is on my same route, but I am 74 y/o, stage 4 right now.I had the Gemzar Carbo, 40 radiation treatments, Alimta and Tarceva. Started losing weight pretty rapidly after Tarceva and it wasnt effective so took off after first run. I dont miss the diarhea, scaly skin and other side effects When I started losing weight Doc put me on Marinol (to give me the munchies) trying to determine if it was my appetite,my eating habit or if the cancer was "stealing" my nourishment. Must have been the cancer, Marinol didnt work. I have been really lucky as far as Medicare D taking care of all costs, BUT they denied Marinol. It was going to be $240.00 for 20tab but onc nurse told them of my history on Megace (no work) wt loss, etc and they approved it. So, dont know if it was pot or experimental med. God Bless you on your journey. I entered Hospice a few weeks ago and am now in a whole new world. Took a ROAD TRIP!!! with a 23 y/o friend of mine last week (get a young friend so they can drive and you can sleep all the time). Planning a painting and sketching trip next week if she can get off work...that's prob with young folks, they gotta work. I think a lot of my fatigue is due to anemia (no more Procrit since in Hospice) so I really make an effort to eat, try and keep up my energy. Love to all from San Antonio

For the past few months, I get a dry, hacking cough and take 1/2 pain pill (Narco, but half is same as a Vicodin), it stops my cough and makes breathing easier. When I saw my chemo guy last week, I told him I was taking pain med, but really didnt have any pain, but it sure helped my cough and breathing. He was so happy I found a way to keep myself comfortable he had no objection to refilling RX. I told doc I came on lung cancer support forums and a lot of people had severe pain, Fentynl (sp) patches, morphine drips, etc. and wondered when that kind of pain might kick in for me. He said it wouldn't. He's been right about everything else

Hi Lilly, just found this thread and I will tell you this, actually heard from a tourist (I'm in the middle of SanAntonio, Riverwalk and Alamo). One lady was telling her friends who had bags of goodies: I'm not buying nothing I cant eat. I'm a great one for buying "stuff" but finally said "no, not buying nothing I cant eat"

I don't quite know where to post this, so moderator please feel free to move. My little problem is "Capullo" a 2 pound, 5 year old teacup chihuahua. I have had him since he was 5 weeks old. I have many friends (no family) who dearly love him, but it is such a responsibility (yes, he's spoiled) to take on a dog (they have pets too, or work or a number of reasons). My plan has been to put him with his vet, if I should become suddenly ill, and friends would take him until he could be properly placed. But today, something hit me. I met a stranger who stopped and played with Capullo (I'm telling you, everyone loves him) and this man told me his little chi had been stolen/missing for 3 weeks and it was the joy of his life, his wife, his child and this dog meant more to him than anything, and he was feeling such grief. I got to thinking, why not give Capullo to someone now, that way I can see how he adapts, how he might fit in with a new family, and I would feel more secure knowing he was okay. Now, I havent told any of my friends about my possible new plan, as they may think that I am "giving up", because they know how I love my little dog. But I am realistic, and know that my future is "iffy". So, I am wondering, has anyone faced this kind of problem? Hey, I know there are bigger issues with us folks, but thought someone might give me some help. Thanks.

Hi, sounds like your dad lives in the hill country, great place. If he is 70 miles from Austin, the University of Texas is right there with fantastic medical facilities. They have UTMB hospitals all over Texas (I am here in San Antonio). The hospitals have social services that can be very helpful, and may be able to help or guide you as to what you can do. God bless you.

Hi, I just finished the 3 alimta treatments (1 every 21 days) and will get a chest/abd contrast CT scan next week to see results. If improvement, I will be able to take 3 more Alimta, if no change (or worse) I get nothing. The guidelines are very strict for giving Alimta. I feel like the person who felt great for the 1st 5 days or so, then had extreme fatigue and SOB. I was extremely anemic, so got procrit for 3 weeks, and that helped. I take folic acid 400mg am and pm daily, as that helps activate the Alimta (cancer cells like all of our good cells need folic acid, they cant utilize it so come to the toxin to "steal" the folic acid (anyway, that's how I visualize it I take steroid 2 days after treatment (steroid given in IV time of treatment), had 1 B-12 at beginning of treatment, none since. I am 74 y/o, a year and half into diagnosis and treatment. I had 4 months of carbo/gemzar and then 40 radiation treatments. I tolerated all very well, changes in blood corrected with medication. I was surprised when doc told me it had been 9 months since end of first treatment! Wow, where does the time go? He couldnt give the carbo gemzar combo, because it is only 20% effective 2nd time. His aim is to keep me feeling good, and actually, I do. So, the good Lord willin and the crick dont rise, I am still kicking butt. Good luck and God Bless all of you. Your friend in San Antonio, Barbara

Hi just saw your post and thought I would add this: I was diagnosed a little over year ago, and when I went to pulmonologist for staging, he told me this: "I am so glad to see your smiling face" and he quoted Proverbs (dont know it exactly) that says "a cheerful heart is the best physician, a sad heart drys up the bones". That really impressed me, because the blood is made in the bone marrow. Of course, it helps that I always wear my boots and cowboy hat and people automatically smile at me and I smile back

Hey Valerie, I'm still here too They can't get rid of us, can they? So MERRY CHRISTMAS TO ALL AND TO ALL HANG IN TIGHT, IT'S GONNA BE A GOOD YEAR

I am 3b non small cell, diagnosed year ago and in past year had 4 mos. chemo and 40 radiation treatments. I'm doing great, and during my first stages, friends and family wanted to give me all kinds of "cancer fighting" therapies, either they had heard of or knew of someone taking them. I realize the chemo is a toxin, critically evaluated by my doc at every phase of treatment, no standard dose, all tailored to me individually. So I told my doc "Do people ask you about other therapies, because I know families and friends want to do everything to beat this thing?" He said, yes patients did ask, and the thing he had to tell them was that he could not agree to anything other than what he was specifically giving in a form of toxin. He said it would be going into uncharted territory and the effect on his therapy would be unknown. The alternative meds/supplement could neutralize his chemo, make it stronger, make it weaker, make no difference, he couldnt factor in the effect it might have. His policy was that if a patient wanted to do it, he could but he would also have to sign a release stating that he was given information by the doctor who would not be responsible for subsequent chemo effects. And you know, I think the guy's right. The chemo we're getting is poison, and you dont know how it will react with alternative stuff. Just thought I'd let you guys know.

Dear JanEK, through hospice or a social worker, it may be possible for you to get "respite" help. Taking care of a loved one, or even caretaker for a non-family member can really take its toll, physical and mental. That's why there are respite services, something to give you a day for yourself, to keep it together which is so hard to do. As difficult as it must be to write right now, you are a wordsmith and maybe you can take comfort in expressing yourself and your feelings about what is happening to you. The disease is devastating and can leave you "speechless", but use the gift God has given you and find release. love, friend, hang in there.

Dear Marjo, it's so hard to have to deal with the cancer PLUS costs. Scroll down a few messages on this board to NEWLY DIAGNOSED, NO INSURANCE and there are a lot of replies that might help you or steer you in the right direction. I know that your sis will not be denied treatment because of no money, the trick is to find out where you need to go to get it. God bless you friend.

You got good news from the folks that have a port. Actually, I didnt know anything about it when I first started chemo, took 2 treatments without it, but my veins were good, and the nurses kept asking me why I didnt have a port. My onc doctor told me the reason he didnt have me get one before I started chemo was because he said he wasnt sure I would show up. Boy, he had me pegged. I wasnt sure I wanted to start ANY treatment. Anyway, I had it done as outpatient by general surgeon under "twilight" anesthesia. Cant hardly tell I have one, it's so small. I finished chemo April 2006, and now just go to have it flushed, just takes about 5 minutes or less. My onc nurses were SO HAPPY when I had it put in!!!!

I felt so sad to read about your mom, and God keep and bless you in your grief. I am 73 and have been treated since Jan 2006 (almost daily with first chemo and now radiation). It seemed to me that your mom went so quickly and it makes me wonder how my illness will progress. I hope it goes quickly and still with care and support around me. I hope I havent made you feel sadder, because I know how it feels to lose your best friend. Love and strength to you and your family.

Donna, also meant to tell you the area they checked on me was "eye to thigh" my technicians words.

Hi Donna, I had PET scan in Dec 2005. The imaging center I went to had a new Philip machine and only took 13 minutes. The technician was really proud of it because he said some machines take 45 minutes or longer. Good luck to you friend, keep us informed of how your journey goes. We are all on it, just keep hanging in there.

Hey Shirlie, I didnt have pain from chemo, but I had to take injections to raise my white blood and red blood cells. That's when I had "bone pain". When the nurse gave me injection she said you might have a little pain. Man, about 5 AM i thought my back was breaking and took pain pills, it was gone in about 5 min. I told the nurse I'm glad she told me about the pain so I knew what to expect. She said "did you take some Aleve?" I said "Hell no, I took the heavy duty stuff (I have RX for Norco). I do not see any reason to try and be brave and stand the pain. I had a bad earache just once but figured since there are ear bones, it must be bone pain, took my pills and not bothered since. Most of the time the bone pain started in the small of my back spine, went around the ribs and continued on the sternum. It felt like a crushing pain, but the pain pills took care of it. Good luck, friend, and I will throw in a warm fuzzy blanket for you too

Actually Shirley, I did great with chemo. I am 73 y/o with NSCLC Stage 3B. I had carbo and gemzar from 1/4/06 thru April 06. After my first few treatments I told my doc, "Hey, I feel great, I hope you're not going to kick it up till I start feeling bad." He said "No, I'm going to cut it back a little, because we know it's working because it has affected your blood count". I had frequent blood counts and when they were down, I got Leukine and Procrit. Every now and then, with the blood build up shots I got "bone pain" because blood cells are made in the bone marrow. But hey, I had pain killers, anti nausea medicine and anything else I wanted. I think I had 6 rounds. A cat scan near the end of treatment showed my primary tumor reduced from 3.9cm to 2.?cm and the lymphnodes reduced considerably. My doc was so happy about results, he sent me to radiation oncologist. I will complete the 25 treatments (daily except sat and sun) wednesday, and on Thursday I will start a different radiation beam for 13 treatments. The only problem I have is I lose weight and have to really make an effort to eat as I have no appetite. I am getting Megastrol and I just have to treat food like its a medicine I have to take. But such a minor complaint, compared to what it could be. So good luck and god bless you, friend. You can do it.

I have been on chemo for 3 months and a few weeks ago when I was weighed I lost 5 lbs in one week. I was surprised that I could lose it so fast. Just out of the blue I had no appetite. In fact, every day I would have to really make an effort to feed my little chihuahua (he eats people food), poor little guy, he is 4 years old and only weighs 2 lbs. I knew if I didnt make a serious effort to eat I would start that downhill thing where you lose so much weight. There is a McDonalds down the street. I have never liked BigMacs, and I only eat a Big Mac once a year or every other year so I forced my self to eat a Big Mac every day. I knew at least I would have some hi calorie food. Anyway, I would take an antinausa pill and a anti heartburn pill (I use the generic Zantac I get at the Dollar Store, $3.00 for thirty). I did not get the BigMac to go, but would force myself to eat it inside, and took my time eating. I did this for about 10 days and when the doc checked my weight, I had gained about 10 lbs. How about that, Big Mac, the miracle drug. After those ten days, I slowly started getting back a little appetite. I dont try and do regular meals, just eat a little bit all day whether I am hungry or not. I am 73, live alone, and waste so much money on groceries that I end up throwing out. I even tried going to Luby's cafeteria thinking looking at all the food might stimulate my appetite. I would get a plate with some veggies and fruit end up taking one bite out of each item. That didnt work. My next idea is to use Meals on Wheels, and if I only eat a few bites I will be eating something. In this illness, as in other debilitating illnesses, there is some gene that causes cachexia (sp?) which is why patients lose so much weight and start a downhill course. Welcome to the site Becky. Nearly everything you experience or will experience has been felt by members here. If you have questions or comments, please post it. Someone can help. God Bless You and your family. You are never alone.

Hi Z, I did great on carbo/gemzar therapy. Was very hesitant to start any therapy at all because I am 73 and felt that if I started something it would make me sick. At time, no symptoms of lung cancer and I felt great. Anyway, I am stage 3B with Mets to mediastinum. I did the first 2 chemo intravenous. Doctor told me he did not order port because he wasnt sure I would show up for treatment. He knew me After my first round I went for outpatient surg and had port implanted (onc nurses sure happy). I am on my 4th round which will finish 3/31/06. At that time, onc wants me to consider minimal radiation.I tolerated the carbo/gemzar very well, with minimal post-nausea. They gave antinausea and sedative with chemo (in my room, about 5 of us just put our lazyboys back covered up with pillows and blanket and slept for a couple of hours...that was nice) One week of the therapy was blood counts and neupagen/leukine/procrit for low white counts, anemia, low platelet. Had "bone pain" from meds to raise blood count, but took care of it with pain med. My catscan 3/1/06 showed my primary tumor lung had shrunk from 3.8cm to 2.something. Doc has to make radiologist report on sizes of lymphnodes to see if shrinkage. Anyway, I feel great and that is my onc and my goal, to keep mets from spreading bone/brain. All in all, I am happy with the therapy I have been given. I hope you tolerate the treatment as well as I did.

Hi, I will just put in my 2 cents. I had to take off a week of chemo due to low white counts, red cell counts and low platelets. I went to onc every day last week for Leukine daily and Procrit one day. After the procrit/Leukine shots the next day I had bone pain in my ribs, sternum and spine. It felt like a vise closing in on my chest. I took a pain pill and was relieved, so it was just bone pain. The blood cells are made in the bone marrow, thats why you get bone pain with those meds. If I had shortness of breath or other cardiac symptoms, and the pain wasnt relieved, I would have gone to ER. But go to ER by all means if you think its something else. Also, taking ALL meds, even over the counter, lets the doc get dosing info, refill info, etc. right off label so he doesnt prescribe something else, or may want to change dosage of medication you are taking. Good luck

Dear Kim, it must be so disheartening to have gone through the stress of treatment, and now facing other emotional difficulties. IMO, even though he has been declared to have no evidence of disease, there may be residual problems chemo related. There is such a thing as "chemo brain". Also, personality changes and erratic behavior can also be related to brain tumor. I think you should discuss this with your oncologist or primary doctor as soon as possible so a treatment plan can begin. God Bless you and keep you through this.

dear tammy, I am 73 y/o female with dx nsclc with poorly differentiated squamous cell cancer. My pulmonologist referred me to oncologist who sent me to thoracic surgeon for RFA, radiofrequency ablation, direct radiation into tumor. All my staging exams showed tumor probably stage I, but a PET scan just prior to RFA showed mets to lymphnode. When the mets was found my diagnosis jumped up to 3B and the question was should I have radiation (RFA) or chemo. The radiation would only treat the Primary (which was the lung cancer in left lobe) but would not effect the mets. The oncologist felt that the lymphnode should be treated first, because that is the way that cancer spreads to the bones and brain, then if necessary, radiation could be done later. I am on the second round of chemo: carbo/gemzar. I feel great, as this combo is well tolerated (says my onc)but it has knocked the heck out of my blood cells: low white count, low platelets, etc. The blood abnormalities are treated with Procrit, Neupagen and leukine (4 shots starts tomorrow). I would definitely tell doc what herbal/alternative stuff your dad is taking. My friends are distributors for Xango, seaweed stuff, etc. and want me to try it so badly. At first I figured, well, it cant hurt, but as I see what the chemo has done to my blood, I have to refuse them. The chemo treatments are so controlled and fragile that I don't want to do anything to upset whatever balance is going on. Good luck to your dad. I would question your onc about why he was going to radiation first, what effects would it have on chemo, if chemo done first what effect would it have on radiation. Hey, you're not expected to know these things so you have to ask.

so glad to hear from all of you. I went to onc today and my white cell count is up, so i guess it is really powerful. I told my nurse and she said well you took advil didnt you, I said heck no, I took the really strong stuff (Narco, i think its a double dose of vicodin), I dont think anything less would have knocked out that pain. Hey, it doesnt bother me at all to take strong pain med. You will never get addicted if you use it for pain, and believe me, I am not going to be a brave little soldier about pain. Thanks again, luck to all, and I go back Wed for more Gemzar and carbo (if blood still okay).

About 2 weeks ago I started chemo for nsclc squamous cell stage 3b. I was really dreading it. It was carbo and gemzar one week, next week gemzar only. The 3rd week was labs and discussion with oncologist. I zipped right through the chemo, no problems and was tickled to death that all I had feared was for nought. On week 3 I told my doc, just because I have had no problems and no chemo symptoms, please dont kick it up a notch, I feel fine like it is. He told me he was glad I felt good, that the carbo/gemzar was pretty much tolerated but in spite of no symptoms, my blood counts showed the effectivenss of the chemo. My white count was very low and my platelets were very low. So he gave me Neupagen (sp?) injections and will do lab tomorrow. Then do lab again Wed before chemo, and maybe a transfusion. The shot didnt hurt a bit, but the nurse said I might feel some aches and pains later on. About 5 am, out of a sound sleep, I had the worse back pain I have ever had, I felt like my back was breaking, it was excruciating. I managed to get up and take a pain pill (narco) and got relief and pretty much pain free rest of day. But, now its bedtime and I can feel it slightly starting to kick up. I was wondering if anyone else has had that kind of pain from Neupagen. I know folks have drops in their blood from the chemo, and something given, but dang, I couldnt understand the bone pain. It really hurt. When I get my lab tomorrow, I will check with doc, but just thought I would see if anyone had that happen.

dear kim, I always thought people were being "flip" about mental lapses calling it chemo brain. Then I looked it up and sure enough there is such an effect. I asked my onc nurse if she had ever seen it and she said she had only seen it a few times in her 25 years of onc nursing. I asked my oncologist and he said that he feels it is an effect from loss of sleep and stress more than chemo. A month or so before I was found to have lung cancer, I took one of those Tickle IQ tests. So now I am going to test myself every 4 months or so and use the initial test result as a baseline to judge any effect. Hey, I'm 73, gotta dodge alzheimers now this. Also, I work crossword puzzles really fast. I will check and see if my crossword proficiency is decreased. Well, my brain's all I got, so gotta take care of it.