cathyr

Karen, I am on the same oxycondin dose as your husband and use Dialatin for breakthrough pain. It does not make me loopy or sleepy at all. In fact, it just takes the pain away. It is important to take it at the same time every day. I can drive, shop, do anything I want and it has not affected me. I just know that if I am late taking it by over 1 hour then it screws me up and the pain gets worse for awhile. I agree with everyone else that writing down what he takes each day and the time is probably your best bet. Good luck, sweetie! Hugs to you and yours, CathyR

Curtis, How beautiful! Thank you so much for sharing your thoughts with us. You provide me with so much inspiration. Hugs to you, Curtis!!! CathyR

Hi everyone, First, let me thank those who wrote back regarding what to do about decreased appetite. It was very helpful and I am trying to eat whenever I can. I never thought I would be in a situation where I actually lost my appetite. Even when my husband dies, I ate for emotional reasons. Oh well. I guess its a good thing that I was 40 lbs. overweight before this started. I had the 2nd vaccine on Wednesday for the clinical trial. It is very trying. I am so glad to be a part of this trial, but it is not an easy one. I have to give myself an injection in my upper thigh for 8 days after and I am getting a reaction of redness, swelling, itchin, (sound similar). I am taking Benedryl to try to keep the itching down, but it makes me very sleepy. I am definetly catching up on my rest. The doctor is not sure whether this is a good reaction or not. I guess we'll find out. The whole purpose is to boost the immune system so that it will start to fight the cancer. Anyway, I'm glad I survived this last injection and now I'm half way through the program. Thanks again for all your support and love. It really, really helps! CathyR

Prayers are being sent from here too! Praying for a full recovery. Hugs to you, Cathy R

Wow, Jim, what fantastic news! Thank you for sharing that. I'm so happy for you. It's just a reminder to us all that we can never just give up. The cure can be right around the corner! Now - GO CELEBRATE!!!!!!! Hugs to you, CathyR

Hi all, Well, two weeks have gone by and the 2nd vaccine will be given to me today. I am praying that it works and that its not quite as stressful a procedure as the first time. I've been holding up okay, but my appetite is really gone. I think it's from either the pain meds I'm on (oxycontin) or the injections I have to give myself for this clinical trial (leukine). Anybody have any suggestions? Yesterday I ate 3 bites of a baked potato and had to force myself to eat that. Hugs to you all, CathyR

Oh Don, Happy, happy day. What terrific news! I'm so excited for you both. Prayers can work! Hugs to you! CathyR

Fay, I think we should have a karaoke machine so we can sing some emotional country western songs. That would go so well with the pity party. I have some LeAnn Rimes karaoke tapes that I'll bring with me. Okay? CathyR

Prayers are out to you David! Hang in there. You've got all of us with you! Hugs, CathyR

I'd like to come to your pity party. I think it's such an ugly trait to feel victimized and sorry for oneself, but if I can confine it to one week-end, I would love to join. My cancer has spread bigtime in the past 4 months with numerous, sizeable nodules in both lungs. Is it scary? Yes it is, but I have a choice of which way to face it. I chose to fight without feeling sorry, but just for this one week-end, I would like to say "I don't deserve this and I hurt!." There! I said it. How am I doing? I'll bring the Matzo Ball soup. It's some good ole Jewish penicillin and nobody's allergic to that! Hugs, CathyR

Wow! Fantastic! I'm so happy for your family. What terrific news. I'm all for celebrating. You've got us all smiling again! Hugs to you, CathyR

Hi all, I wanted to let you know what was happening with this vaccine trial I started. I had the Cytoxan chemo 2 days before the vaccine. No problem. The day of the vaccine I had to have a series of skin test that include tuberculosis, clyamedia, and other things as well as a test to check my immune system. I have to go back to the med center every few days for them to "read" my skin results. The vaccine procedure was pretty tedious and stressful. You lay still for a couple hours while the top of your foot is being given xylocaine. They inject a blue dye to find out where the lymph channel is in the foot. When located they cut the skin and inject the needle with the (in my case) donated cells directly into the vein. They have to do this slowly. You can feel it go up your leg and thigh. Then they stitch the foot and we repeat this process in 2 weeks for up to 8 weeks. I also have to give myself an injection of leukine under the skin in my thigh every day for 8 days. Needless to say, I am grateful I can do this. It was very emotional and stressful. I am praying so hard that it works (if not for me then for future patients). Again, they are accepting new patients everyday into this trial. I know people who have nothing but medicare who are on it. They doctor works out of St. Vincent Medical Center. They have a lot of out of towner patients and have living provisions for them at the Medical Center. They take stage 4 patients. If anyone is interested, please contact me and I will be happy to give phone numbers. Anyway, that's it for now. I am resting today. First day without having to see a doctor in a week! My love to you all! CathyR

Beth, I, too, think this person was trying to motivate you and chose a bad way to communicate that. Sometimes its better to say nothing than criticize somebody else. I hope you are feeling better today. CathyR

Sharon, Thank you for giving us all such good news! Wow! What a big relief. Now go celebrate this week-end. Hugs to you, CathyR

TAnn, Wow! That's great, fabulous, wonderful, terrific, sensational (did I miss any words?) news! You deserve this so much! I hope that now you can have a great week-end, relax, and celebrate with you family. You've made my day! Hugs to you! CathyR

Melanie, Prayers are being sent your way immediately! The onc. needs to get the pain under control ASAP. They can do that. If this onc. isn't doing the job, then seek other council instead. If I can do anything for you please pm. me. I think of you and Greg alot and hope this journey gets lots easier for you! Hugs to you, CathyR

Praying for you David! Hope the doc. helps you out ASAP. Hang in there buddy. We're all here for you. Hugs, CathyR

Hi Cyndy, Welcome to this site. There are very informative and inspirational people here to help you in your fight. I've been fighting this for 3 1/2 years now. Tomorrow I begin a clinical trial. There are always new things around the corner. The best advice I can give you right now is to become as knowledgable as you can and if possible have a medical advocate with you when going in for important test or appointments. It always helps to have somebody else listening so that you hear everything. Sometimes it can get pretty emotional so it's good to have company with you. What area of the country are you in? We're scattered all over the world! Please keep in touch and come here often. Hugs to you, CathyR

Hi Greg, Sorry you guys had to find us. But, this is a group full of information and inspiration. I was diagnosed Stage llB over 3 1/2 years ago. It went to stage IV Dec. 2003. So, I've been doing okay for 14 months or so since the new staging. My advice to you is to not be afraid to get 2nd opinions and to check into clinical trials. Please visit this site often and allow us to help. Hugs to you, CathyR

This is more like the Beth we've come to know and love! You CAN do this. You've got lots of fight still left in you girl! I'm praying for all of us. Hugs to you, CathyR

Addie, I am so sorry to hear of this setback. But that is exactly what it is - a setback! You can still fight this and have plenty of good quality of life left! The chemo will surely kill those "active" cells. You have my prayers sweetie. You are not in this fight alone. Hugs to you! CathyR

Bob, I have to give you the other side because I think that's what this board is about - lots of experience. I was on Iressa for 2 months and it did absolutely nothing for me excepts give me very harsh side affects that really inteferred with my quality of life. I supposedly met the qualifications that most people who respond to Iressa do, but it didn't work that way. Personally, I felt it set me back at least 2 months and I got mets to both adrenal glands while taking it. I know it works wonders for many here on the board, but for some of us it did the opposite. I wish you luck in anything you try, Bob! Hugs to you, CathyR

Thank you so much for all your blessings and prayers! I am humbled. The clinical starts this Monday morning at 9:30 a.m. I can only hope that even if I am not helped by this clinical and I will in someway contribute to a cure in the near future. I am so tired of hearing about 20's and 30's aged people getting lung cancer. It's not fair for anybody, but espicially young adults like this. I was given no illusions of a cure or longer survival by the people running this, but like I told Dr. Wiseman "I would rather die on the operating table knowing I was doing something to help than sit back and allow this disease to just take me over." I will keep you all informed as to the progress or steps involved. Thank you again for your understanding, compassion and prayers. Hugs to you all, CathyR

Welcome to this site. Sorry you had to find us like this. This site is a tremendous source of information and inspiration. Please let us help you get through this. Hugs to you, CathyR

Hi all, Well, I finally got accepted for a clinical trial. I start this coming Monday. This is a vaccine trial where the cells can either be your own or they can use donor cells. The cells are treated with Inteferon and given to you as a vaccine. I wish it were that easy. Actually, the treatments are quite involved. There is a chemo called Cytoxan that you get 2 days before the vaccine that is used to lower the number of white blood cells which block the immune response. Then the vaccine is given. It takes 2 hours to give as it is injected into the lymph channels of the foot and/or hand. Then, for 8 days after you receive a subcutaneous injection of Leukine which is used to protect the bone marrow from the effects of chemotherapy as it stimulates both the number and activity of certain kinds of white blood cells. It was explained to me that both this vaccine as well as the GVAX vaccine is basically designed to boost one's immune system. Anyway, this will probably work better for me because I won't have to go through another surgery which I would on the GAVX trial. There are still openings in this clinical trial which is in Los Angeles. The GVAX trial in Sacramento is still opened too for anyone interested. Thank you all for your support. I didn't want to post anything about this until I knew for sure. I love you all! Hugs, CathyR