candee

Billie, Welcome to the group - sorry you have to be here! You sound like a really good addition! "ATTITUDE" effects everything, as it seems you have discovered. Looking forward to hearing more about that GVAX Vaccine Clinical Trial! Blessed Be,

Hey Y'all, The good news is there are only two places showing ED as the guest of honor! My L Arenal Mass and a little bit of new activity in my Right Lung's apex. Now, I know what I am up against! (much better than the unknown). The plan is: Port Cath insertion tomorrow a.m. Start Chemo on 3/23/04 Taxol/Carboplatin (3 weeks on - 1 week off) Until that state of remission is reached again! And I know it will happen!

Francine, What a bittersweet note from you - your words do convey your frustration. I can hear you just want to feel better for a little while, at least! I can also hear your spirit and the knowledge that it will happen. My heart and thoughts are with you! Blessed Be,

Sending thoughts of peace to you and yours, Kel

Dear Norme, I just saw your post about Buddy! How my heart goes out to you....... You know home girl how I feel about the memories that can bring on the healing. I know from your posts how many you have and how sweet and some bittersweet they are. Please accept my sincere condolences for your very special Buddy! Blessed Be,

Thank you all for the Good Vibes! I know they help ~ I feel their strength all the time. My son is here this week giving me food for body and spirit. Daughter was here last week for a few days doing same. Her and beau will be back during their spring break to help again. Siblings call daily. My hairdresser came yesterday and cut my hair, just to be nice. I made me feel worthy of being loved. Now don't say AWWWWW! You all know how that type of thing makes you feel. I am blessed with so many loving spirits it is just awe inspiring. Am off to the onc tomorrow with strong happy thoughts!

It has been a while since I have posted. Around mid Feb. I was admitted to hospital thru ER due to adrenal mass hemmorhaging. Got that under control after a couple weeks, was discharged and a few days later readmitted thru ER for two Pulmonary Embolism's. I now have a Greenfield Filter to stop that silliness from being life threatening. But needless to say surgery to have adrenal mass removed has been taken off the agenda. During this last process of fun and games we found the cancer visitors in the lymph nodes near the L kidney, during CT Scan that found PE's. I had a Bone Scan last Monday, an MRI of Brain on Tuesday. Was discharged from hospital and had Whole Body PET Scan on Friday morning. I will see onc. on Tuesday, 3/16 for f/u discussion on all tests and discussion of chemo treatments from here. Am looking forward to getting on with treatment and kicking my visitors out, once again. And of course getting my strength back. I am noticing daily improvements. Two steps back, one step forward. One day at a time. Still smiling after I close down the pity parties I have a couple of minutes everyday. I have lots of support and something else that just seems to work - like a lot of other folks here on the board.

Bob, Glad you are back and now taking turns toward the right! Blessed Be, Candee

Judy, The Radiation Oncologist that treated me recommended Aquaphor to use at night at radiation site. It cannot be used during the day it will interfere with the radiation and besides it is like vaseline so it would mess up your clothes (this can be purchased over the counter at any drug store) It works great! I used Aloe Vera Gel 99.5% pure, during the day (bought it at the Health Food Store) kept it in fridge and it felt great on radiation area. Hope all goes well! Candee

I did have cisplatin and gemzar when taking chemo. The side effects I had were fatigue, change in taste buds (I took zinc to help with that) and some neuropathy that went away a while after I stopped chemo. But you know everyone reacts differently to chemo drugs. This doublet is state of the art and worth a try. If it does sit well, you can change. Hope this helps some! Candee

Norme, Sending positve thoughts of peace for you and Buddy! Thinking of you, Candee

Becky, Great to have a plan! I know that feels good! Hope the treatment goes smoothly! Sending positive energies your way and the best of wishes! Blessed Be,

Norme, I have seen that you live in the Greater Cincinnati area on you posts. I am envious, and hope we get to move back some day (the sooner the better). We were home for the holidays. We were at Newport on the Levee for dinner with friends and saw "Cold Mountian" at the theatre there. The riverfront in Newport and Covington gets more built up every time we are there. I try to get back as often as possible (since I am not employed right now). The bad part about the Basic Skills placement test is they do not allow calculators for the math. Who doesn't use them nowadays? But it is good to learn the formula and how to use it in your brain. Calculators are good for checking your work though. Thanks for the good wishes!

Christy, I had radiation pneumonitis early October. My onc treated me with decadron 4 mg tablets 4X a day. It took care of the breathing, but all the side effects were ugly. I was on the decadron for about 4 weeks and then they started weaning me off them. I kept up with my breathing progress and pushed my Dr to wean me off. By Christmas I was looking pretty normal again (not like a huffy-puffy woman anymore and had lost most of the weight that I had gained) and my breathing was as good as it had been back in September when I was still riding my bike along the shore. It did actually take a while for all the fluid level to get to a minimum and the inflamation of the radiation fibrosis to die down (see signature below), but it has and still is. I hope that helps! I know you have gotten a lot of info on this, but, as the saying goes - "Knowledge is Power" Blessed Be,

David, I received Gemzar during my chemo treatments and did not have any problems except fatigue. I wish I could help you with this. Please call your onc right away, though. They can probably give you some medication to help eleviate the problem. Sending Positve Thoughts and Wishes your way! Blessed Be,

Well today I went to get a thoracentesis done. Remember the radiologists at the medical center were looking at my films from mid December? They saw fluid and wanted to drain that and then biopsy it. They could not find enough fluid to drain and said the scar tissue also looks smaller on a CT Scan they did today. YEA!!!!! So the plan is to get another CT Scan in a month and see how it looks then. I like that, news! The other info is I spoke to my onc last week to ask a couple of questions. One of the questions being, "Am I now Stage IV since the adrenal gland is showing evidence of disease?" His answer was, "Yes, if the biopsy on the adrenal gland comes back positive for disease". So I smack myself in the head and say well of course CT Scans and PET Scans do not prove disease, just suggest it , DUH! I have an appointment to see an urologist next Wednesday, so it shouldn't be long before I get the real scoop. In the meantime, I am going back to school. I have started the process at a community college here in the area. Will be taking the Basic Skills Placement Test tomorrow. I know I will have to take remedial math classes But that is not a bad thing. I do not want to get into a math class and be just too lost. (It has been thirty years since I have been to school) . I have an appontment with an advisor on Monday. I will of course be starting out slow. One class this quarter (especially with everything else going on). I am looking forward to this, especially since we have only lived in NJ for two years. All my friends and family are back in Cincinnati, OH. Don't get me wrong I have made some friends here, mostly through my work with the cancer center. School will give me an activity that has nothing to do with cancer. I am looking forward to that! I didn't get the chance to work long enough here to make many friends before I was diagnosed. Just long enough to receive disability (so that is a good thing). Actually I did make two girlfriends, but they moved away. Anyway, that is just the facts, not feeling sorry for myself. My husbands car just pulled into the drive and I am going to spend some time with him. Wishing a peaceful evening for all of you! Blessed Be,

Nancy, Beyond this time of sadness lies the comfort of memories. I believe that tears can heal, that memories can comfort, that love lives on forever. May all your, beautiful memories of David, and your love of each other give you strength at this difficult time. My heart and sincere condolences go out to you and yours. Blessed Be,

Bob, Sorry to hear about this dilema of yours. The additional opinions will surely get to the bottom of it Have always contended that life like a carnival and I just don't know what ride I will get on next, but with this disease I don't even know what the rides are. Sure does bring new adventures, to the state of living! Sending positive thoughts and wishes! Blessed Be

Barbara, Thinking of you and hoping you will soon be feeling much better!

Becky Late posts of B Day wishes only help extend your special day into special days! "Make the coming hour overflow with JOY , and let the PLEASURE drown the brim." - shakespeare Hoping you had JOY and Celebration!

The good news is: there is NED anywhere in my body except the left adrenal gland. The plan is: most recent films have been taken to radiologist at medical center to ascertain if my left lung can tolerate a biopsy. This is where I have severe radiation damage (a lot of scar tissue, and more still forming) If it can this will verify that what appears on the PET Scan is absolutely, without a doubt, scar tissue. If I can then that will be done first, then off to urologist to schedule excision of adrenal gland. Then chemotherapy. And doesn't that just s--- as my hair is finally thick again and in the process of growing for a particular style. Oh well, guess I will do that later this year. My onc will be treating me with Carboplatin and Taxol or Taxatere, not sure of how many cycles are planned.

It is nice to have a place to vent and get rid of the anxiety and the angst! Thanks to all of you for the support. I know the the tumor on the adrenal gland is easily removed, and I dealt with chemo before with a limited amount of side effects. Wish I didn't have to deal with it, but am ready for the challenge! Just hoping that is alll it is. Blessed Be! Always, I hope to grow brighter, funnier, I hope to learn to be even more well-rounded. But right now, I cannot be any better better than I am. Maya Angelou

Hi All, I know I have not posted for quite some time. I do review messages on the site from time to time. I can honestly say I have been attempting to live life as normally as possible. Especially with the holidays, and I must say, I have been having a good time! I do think about my disease daily and deal with the side efffects. It has been an adventure. I have been on steroids (decadron) for radiation pneumonitis. They did their job, but they sure do cause some horrendous side affects. Most of those have diminished now. I had my 4 month scan, it picked up a tumour on my left adrenal gland. The good news is it is not in my lungs. I have been taken off of the Thalidomide for the clinical trial. So those little side effects have gone away ( mostly neuropathy, still have a little in left hand) Anyway, I will be going back on chemo. But first my onc did a PET Scan last week, to see if the cancer is anywhere else. I will get my results on Wednesday, 1/7/04. I have been on pins and needles as the unknown is the scariest part! I will be glad to find out what the real deal is........ Then I can fight! Can't fight what you don't know. Anyway, just needed to get this all out! Thanks for being there! "Someone was here before you. lost before you, ignored before you, and yet, miraculously, someone has survived with passion, compassion and humour and style. Maya Angelou

Barb, Congrats! again to you on the good news! Am glad to hear you are going forward with becoming a non-smoker. Many of us know the challenges with that journey. One day at a time! Sometimes one minute at a time. We all find our own way to deal with it. Am thinking about you! Keep busy !

Here is a flyer I received yesterday from Judy Willbergh, Supportive Care Manager at Meridian Health. This has been in the works for about 2 months. It seems at though some of the PsychoSocial support professionals have good intentions, but do not realize that cancer patients do not just sit around waiting with baited breath for our schedule to be filled up at the last minute. what else would we have to do with our time. This is from a woman that said we could revisit the conversation on a face to face lung cancer support group when we see what kind of turn out we get from this event. No wonder they are disappointed with results. Anyway here is the info: CancerCare, CHEST Foundation, and the Oncology Nursing Society Present “Living with Lung Cancer” A FREE two part telephone education workshop series for people living with lung cancer, their families, friends and health professionals Part I: Wednesday, November 12, 2003, 1:30 – 2:30 pm EST Living with Lung Cancer: Diagnosis, Treatment and Supportive Care Phillip Bonomi, MD Part II: Wednesday, November 19, 2003, 1:30 – 2:30 pm EST Living with Lung Cancer: Navigating Your Healthcare Team, Resources and Support Systems Frank C. Detterbeck, MD Winfield A. Boerckel, CSW, MSW, MBA Each telephone session will be followed by a support group hour that will be facilitated by Ocean Medical Center’s Oncology Clinical Nurse Specialist and the Supportive Care Manager Sessions will be held at Meridian Life Rehabilitation Center 801 Arnold Avenue Point Pleasant, New Jersey 08724. Space is limited, so please contact The Meridian Health Line at 1-800-560-9990 to register. I am attending in the privacy of my home - as I had to to get my life on the road - no time to wait for others.