candee

A few weeks back, one of our members - USPSWIFE - also known as Darla, was assisting a neighbor, by taking them to the ER. On her way back, she passed out hit a brick wall and was taken back to the ER herself. With her history - CT Scan of the Brain was done and three lesions were found. Darla is in an unbelievably strong woman - with a devil may care attitude. She is currently dealing with all the possibilities this stage of the disease and this recurrence has thrown ar her in her own way. They have not given her a good time line prognosis (one month with nothing - six months with treatment) I hate statistics! Her concern is quality of life (of course). I believe she is looking into WBR at Baylor University. When I talk to her she laughs. They say laughter is food for the soul. So that part is taken care of. Just wanted you all to know, so prayers, positive energies and good thoughts can be sent her way. Allowing her path - whatever whe should decide - is a peaceful one filled with joy and happiness. Prayer line starting here!

Marissa, As you said you are not really dealing with the stress - you are hiding from it and not very well, according to your description. Get regular CT Scans. Deal with the reality. Much easier than dealing with the unknown. Just think how much better you will feel to know there is nothing there or if per chance there is, just exactly what it is you are dealing with and what can be done about it. Cancer is not an absolute death sentence, unless you let it be. It can be fought very successfully nowadays and new treatments happen conatantly. I know a woman that was diagnosed with Stage IIIB NSCLC 8 years ago - and still going strong. This is not done by hiding in the sand!!!!! Good Luck to You! Get that smile back on your face! Knowledge is Power!

Cecelia, My experience with radiation caused absolutely no pain. I suspsect it is the disease. When you say she is taking morphine, does this mean by mouth, every 4 to 6 hours? I was in a lot of pain upon diagnosis, my Dr. managed it with long acting Duragesic patches and used morphine sulfate by mouth for breakthrough pain. Eventually, the dose of the patches was stabilized and was able to do away with the by mouth meds. Push your Mom's Dr's for pain management - pain has no purpose - except pain. Radiation can help tremendously with alleviating the pain, eventually, but in the meantime, some assistance will be needed and some time to enjoy the present. By the way - welcome - sorry you have to be here, but this is a good group to bounce things off of. Everyone cares! Blessed Be! How is her Chemo going?

Bob, Back in August I petitioned the Governor, Health Commissioner, Head Epidemiologist and all three of my legislative representatives. Followed up with lots of phone calls and emails. The Director of Cancer Research was asked to contact me. We have built a rapport of sorts. The bottom line is November has been proclaimed Lung Cancer Awareness Month in NJ. A copy of the Proclamation was even sent to me from the Governor with the official GOLD STATE SEAL and little blue ribbon. (whoo hoo) Senator Joseph Palaia called me personally to advise me that this had occured and I was responsible, but his main message was that he had been a part of making it happen. This was all right before the elections you know. Just in case you are interested - there is an Assembly Joint Resolution No.53 on the board (so to speak) that was introduced on 12/16/2002 by Assemblyman Joseph R. Malone, III and Assemblyman Ronald S. Dancer (Co-Sponsored by many other Assemblypersons), to designate November annually as "Lung Cancer Awareness Month" It has just kind of been sitting there - waiting for more push. Perhaps we in NJ could push the newly elected to get this taken care of before next year. I do not really want to badger all those folks again starting next August.

Dean, During my treatments, I lost weight and found adding a couple things regularly thru out the day helped. One is ice cream always tastes good and is loaded with calories. Didn't care for Ensure or Boost. We found Nature's Plus Spiru-teen High Protein Energy Meal 176 calories with 8 oz of skim milk. (comes in many different flavors - my favs are chocolate and nutty berry) I use whole milk and add 4 additional oz than what it calls for - due to the thickness and for extra calories. Also used Champion Nutrition MET 2 High Energy meal supplement 260 calories per 2 scoop serving- this can be added to anything with out adding flavor (but it does come in a chocolate flavor)- I especially like it in fruit smoothies with yogurt. Both are best mixed with an electric hand held blender (spoon doesn't mix as well). Still do use both of these for quick energy snacks between meals . Both products can be found at Health Food or Nature Stores. Carnation Instant Breakfast is a quick one in the A.M. Banana Ice Cream shakes are great, also.

Deb, I agree with Don, sounds like your Dad may need better pain management. Pain has no purpose and can cause side effects in and of itself. If he wasn't in pain he would probably come out of *the little room* more often. I had my last radiation treatment on June 19 and discovered I was not having any pain (back, shoulder, arm, neck, face), when I forgot to change my patch about a month later. I used Duragesic Patches 200mcg for my pain, it allowed me to function normally around the house. I couldn't drive, but I could go places with other people. Sending out positive thoughts for you all!

I am in the process of starting a face to face Lung Cancer Support Group in Central NJ. Specifically Southern Monmouth County/Northern Ocean County near the shore. If you are a Lung Cancer Survivor you are aware that there is no support group for us at this time. If you live in Central NJ and would be interested in becoming a member please email me for mor info. Also of importance to us is, November is Lung Cancer Awareness Month. Spread the word, call your Governor's office and find out if they have proclaimed November Lung Cancer Awareness Month. You can also call ALCASE (Alliance for Lung Cancer Awareness Support and Education)800-298-2436 they have a list of which states have proclaimed. Call the media entities in your area. Let's advocate for ourselves. That's what Breast Cancer Survivors did 20 years ago and look where they are today. Research dollars for Lung Cancer are only 10% of what they are for Breast Cancer, and 15% of what they are for Prostate Cancer. We have to stand up for ourselves or this will never change. Loving Life & Working to Continue!

Thanks to all for the warm welcome! Regarding the interest in the trial. It is a Phase II Clinical Trial using thalidomide as an antiangiogenisis. It is being conducted thru Fox Chase and sponsored by Celgene. I started on 9/5/03 on 100 mg. On 10/3/03 I went up to 150 mg. On 10/31/03 the dose will go up to 200 mg. I will continue with that dose for 2 years. I go in to my onc's office every week to get a CBC done and talk to the head oncology nurse. I see my onc once a month and will get scans every four months during the study. I will have the scans done twice a year for three years and then once a year when treatment is over. Treatment will be stopped early if: Cancer comes back or if for any reason I cannot tolerate treatment with the study drug. I will be offered a different treatment if that happens. Have a Great Day!

Thought this might be of interest Sharing Perspectives On Cancer Research A FREE CONFERENCE FOR CANCER SURVIVORS AND THE PUBLIC SATURDAY, NOVEMBER 15, 2003 8:30 am – 4:30 pm (lunch provided) THE NEWARK MUSEUM 49 WASHINGTON STREET NEWARK, NEW JERSEY featuring best-selling author and lecturer Dr. Bernie Siegal For many, Bernie needs no introduction. He has touched many lives all over the planet. In 1978 he began talking about patient empowerment and the choice to live fully and die in peace. As a physician, who has cared for and counseled innumerable people who’s mortality has been threatened by an illness, Bernie embraces a philosophy of living and dying that stands as the forefront of the medical ethics and spiritual issues our society grapples with today. He continues to assist in the breaking of new ground in the field of healing. ADDITIONAL HIGHLIGHTS INCLUDE Translational Research: Who, What, When, Where, Why, How William Hait, MD, PhD Director The Cancer Institute of New Jersey Survival for the Cancer Survivor: Strategies for Your Care & Well Being Jamie S. Ostroff, PhD Chief, Behavior Sciences Service Memorial Sloan-Kettering Cancer Center Interactive Dialogue on “Improving Your Care Through Self –Advocacy” Facilitated by Lois Greene, RNC, St. Michaels Medical Center Nutritional Strategies for the Cancer Patient & Survivor Faith Ottery, MD, PhD Director of Clinical Research Savient Pharmaceuticals Approaching Your Sunset: Coping with Death & Dying Joe Davidson, MS Palliative Care & Trauma Counselor University Hospital, Newark Comedy Cures: A joy, laughter and therapeutic humor program. For FREE Registration call 609-633-6552 or NJCCR@doh.state.nj.us

Dear Alyse, My heart goes out to you and your daughter. I believe that tears can heal, that memories can comfort, that love lives on forever. May all your beautiful memories of Richard, your love of each other and your daughter give you strength at this difficult time. Blessed Be,

Barbara, Unfortunately I was not incorrectly staged there were calcified hilar lymph nodes found on my first CT Scan. I had three tumors in my left lung the largest measuring 8 x 5x 3.5 cm in AP, transverse and longitudinal dimensions respectively, this was in the paraaortic region at the aortic arch level. It has come to my attention that pleural effusion negates the possibility of radiation. I received radiation to relieve the pain and kill the tumors. I do have some Shortness of Breath due to Radiation Fibrosis, but I can live with that. I still ride my bike along the shore and walk, I just don't sprint. I have a friend in TX, who was also dx with Stage IIIB inoperable, incurable, Adenocarcinoma NSCLC she was treated with radiation. My oncologist will not say yea or nay(he will never say something works unless there is clinical proof) on one thing that I think helped in the efficacy of my treatments. I also have arthritis, for which I take Celebrex. When my family physician found out about my diagnosis, she upped my dosage. She had read about the trials that were being done and how much the guys at Harvard (as my Onc. says), believe in it. I did end up having a skin rash reaction to the higher dose and had to be taken off of it completely after treatment. I also took Essiac Tea which I do believe has some effect on tumors and my onc. okayed me taking it with my chemo. I still take it daily, just not as many doses. I also think my *remission* is so very remarkable! I never expected to hear the word *normal* regarding my scans ever. When I asked my onc. what my goal should be, Cure, Remission or Pallative Care, he said Remission - so that was my choice. I have been told by others that my oncologist is the most aggressive onc. in the State of NJ and he is involved in more research and clinical trials than any other onc. in NJ. He is a member of the New Jersey Commission on Cancer Research. This gives me an extreme amount of confidence in him. He has a passion and a mission in his life. His wife is the head oncology nurse with a shared passion. Everyone in the office is like that. Thanks for the welcome. I hope this info helped.

My name is Candee Hamilton, I am 50 years old, married to Phil for 17 years. I have two children, Michael 23 and Sadye 21 from my first marriage of 5 years. I was diagnosed with Stage IIIB, inoperable, adenocarcinoma, Left Lung on April 30, 2003. I started having pain/pressure behind my left eye and severe pain in Left Shoulder/Neck/Arm in December,2002. Due to my history of Sinus Infections and Cervical Disc Disease my family physician treated me for a sinus infection with antibiotics and sent me to physical therapy. The pain in my face became worse during the course of antibiotics,and I became hoarse and started aspirating fluids when I drank, so she sent me to an ENT. The ENT treated me with Prednisone and ordered a CT Scan of my coronal sinuses, this showed no signs of sinus infection. Regarding my horsenes and aspiration problem, he had me stick out my tongue, which he held with a piece of gauze and pant, everything looked normal,he said. During this time my family physicion had ordered Percocet for the pain. It really did not take it away, but took the edge off of it. The ENT recommended seeing a Neurologist.I saw the neurologist, she ordered an MRI of the Brain,which was normal. She also ordered a Barium Swallow and a Speech Therapy Consult. The Barium Swollow showed that I was aspirating when I swallowed clear liquids. The Speech Therapist saw me and never wrote a report???? The Neurologist ordered Topomax for me to take at night for the pain. This did help some, but still did not relieve all the pain. The Physical Therapy did nothing after two weeks so I called an Orthopedic Physician. He took xrays of my cervical neck, treated me with Trigger Point Injections(which did nothing) and ordered MRI of the Cervical Neck (this showed evidence of severe disc degeneration) and sent me for more Physical Therapy. He ordered Vicodin ES for the pain, this also took the edge off it, but did not relieve my pain. The pain became so dibilitating in mid to late January that I went on short-term disability from work. After 5 of weeks PT the PT facility discharged me due to the fact that there was no pain relieve. I then told my orthopedic doctor that I wanted to see a surgeon. I saw the surgeon, he said, I was not a candidate for surgery and he referred me to their Pain Management Physician and recommended I get a 2nd ENT opinion for my hoarseness & aspiration of fluids. The pain management specialist did an EMG to figure out which cervical nerves were impinged and recommened I see someone for the hoarseness & aspirating problem before he do anything to relieve the pain. I saw the partner of the first poor excuse of an ENT Specialist. She performed and endoscope immediately and discovered that my left vocal cord was paralyzed. She order a CT Scan of the chest and the neck. The CT Scan of the neck showed paralysis of the left vocal cord. The CT Scan of the Chest showed Multiple pulmonary masses, the largest seen within the left paraaortic region at the aortic arch level. The two remaining masses were seen within the left lung apex. Needless to say a biopsy was strongly recommended. I was referred to a Thoracic Surgeon who ordered a biopsy and PET Scan. The biopsy showed, metastatic moderately differentiated mucin producing adenocarcinoma, mediastinal mass biopsy. The Pet Scan showed these tumors to be primary, with no additional findings noted. I was referred to several oncologists and am happy to say that I found a competent oncologist that has took me off the Medical Carroussel . I have had 30 Radiation treatments and started chemotherapy on 6/26. Have received Gemzar & Cisplatin. My pain was managed with Duragesic patches and that enabled me to function as a normal (albeit high) human being once again. After forgetting to change one of those patches for 27 hours past the alloted time and discovering that I had no pain, my oncologist decided to do a PET Scan, three CT Scans, and a Bone Scan. These came back normal, showing only formation of scar tissue in my lung. (Glory Be) I was declared in remission on 8/13/03. I am now participating in a Phase II Clinical Trial using Thalidomide as an antiangiogenisis drug. I am continuing to love life and have never quit smiling, for as Warren Zevon said, "I now know how much I am supposed to enjoy every sandwich". Thank You for listening, sorry to take up so much space on the board.