CaroleHammett

In my Hi, Barb. In my not at all humble opinion, that's about the stupidest thing I've ever heard (although not knowing what kind of lung cancer you have also ranks right up there ). My own thinking has more to do with the fact that the pharmaceuticals are loaded with megabucks, leaving no explanation as to why they can't run limitless clinical trials for these new drugs. I realize that they have to answer to the FDA to a certain extent, but that doesn't explain why I can't be given a drug that may have a 78% chance of slowing or stopping progression of my cancer according to their earlier tests. And then we have the FDA telling me the pharmaceuticals can't give it to me because it might kill me (based on fact that the pharmaceuticals haven't proved it mightn't) when I'm dying already! Arrrrggggh! Affectionately and with my sick sense of humor still intact, Carole

I can only imagine how difficult it must be to see a surviving parent dating again, but I thank you, Shannon, for what you wrote so beautifully. I'm sure that I'm not the only one touched by your words. Affectionately, Carole

Well, heck. I'm not even dead yet, but I can already relate! Seriously, since my dx, I have watched various of my family members go off in completely different directions in terms of how they handled the news. There are some whom I am just dying (pun intended) to choke, but I keep telling myself they can't help it (and also keep trying to convince myself that this is a legitimate excuse). I have absolutely no advice for you at all, Leslie, other than to take the advice of the others who have posted here who have been in your shoes. What I can and do give you, however, is huge hugs and sympathy. With much affection, Carole

My heartfelt condolences to Mr. Brillstein's family and friends. Affectionately, Carole

Leela. My deepest and most heartfelt condolences to you and your family. With love and affection, Carole

Thanks, Barb. It's a great interview and you're a peach! Affectionately, Carole of the Sea

See also news articles re CP751,871 at http://lungevity.org/l_community/viewtopic.php?p=367855 Carole

Hi, all. A middle of the night post from Mission Bay, San Diego preparatory to dozing back off so as to be able to jump on "Mexican Riviera" cruise ship tomorrow... 1. Dr. West at cancergrace.org has posted on the subject of CP751871 (see also my frustrated comment there) at http://cancergrace.org/lung/2008/08/06/igf-1r-for-squam-nsclc/ 2. See also http://lungevity.org/l_community/viewtopic.php?t=37534 for my posting of 2008 ASCO abstract (referenced above). 3.. More research shows that the above-referenced Dr. Angela M. Davies probably criticized the proposed CP751871 clinical trials (for which I am ineligible) due to the fact that she's pushing Tarceva (at least one of the three trials will be comparing CP751871 to Tarceva) so she's not a CP751871 resource. Having a great time... wish you were all here! With Mucho Love and Affection, Carole "Quality of Life Prevails" Hammett

Dr. West at cancergrace.org wrote on this subject on 08/06/08 at http://cancergrace.org/lung/2008/08/06/igf-1r-for-squam-nsclc where you will also find my "frustrated" comment regarding the inavailability to me of this therapy due to requirements for eligibility in the three Clinical Trials of this drug. Carole

Hi, all. I've heard back from SharonJo, including links and have posted info to other article Barb posted on Vitamin C same day, which is located at: http://lungevity.org/l_community/postin ... ly&t=38259 Affectionately, Carole

Hi, all. I just heard back from SharonJo tonight and she sent me the following link which includes very interesting information: http://www.alternativecancersolution.co ... amin-c.htm It also includes a link to a video interview of Sharon (click Dr. Rosenberg in the News and then click video at new page). Among the information I found interesting on the above site was the fact that the Mayo study that has been quoted for years as a "put down" to the Paulus study didn't use the same protocol (Paulus used IV Vitamin C whereas Mayo used only oral, which--as noted above--has been proved ineffective due to limited ability of body to process oral). I am DEFINITELY checking this out upon my return home. Even if it doesn't slow down or stop progression of cancer cells &/or metasasis, SharonJo believes strongly that it has improved her overall Quality of Life plus she uses it in conjunction wtih chemo treatments and believes it has helped enormously with chemo side effects (also a selling point for me since every condition I've suffered has been a chemo or radiation side effect). Lastly, a reminder to all that I'm jumping on board "Mexican Riviera" cruise ship tomorrow so will have limited internet access until next Thursday (QoL continues to come first! ) Take care all... see you soon. Affectionately, Carole

There is also the "new normal" that we all experience; i.e., if anyone had told me two years ago that I could be "happy" wheeling around Boulder on an electric scooter while using supplemental oxygen full time, I'd have told them they were nuts! Affectionately, Carole PS We embark on "Mexican Riviera" cruise tomorrow; thus my Internet access will be limited until next Thursday, but will try to jump on at least once a day. (QoL permitting! ).

Hi, Sandra. Sorry for freaking out, but it's only because we love you! (Do I sound like a Mommy or what? ) Glad to hear you have plan in place, and that vacation is going well and hope all continues to do well. We embark on cruise tomorrow, following wihch my own internet usage will drop mightily (as will my cell phone use, what with being out of range and all) so tonight is my Bon Voyage; i.e., may not be "talking" to you all until end of next week. Take care all! With much love and affection, Carole

Thank you, Lynn. Just picturing the ripples--both present and future--helps me more than you will ever know. With much love and affection, Carole

Added to that is the fact that the pharmaceutical's search for "synergy" translates into fewer clinical trials of "stand alone" drugs. Instead, they are concentrating on combinations, which also means that the number of those eligible for the trials is a much smaller number. I am thinking, of course, of CP751,871 (http://lungevity.org/l_community/viewtopic.php?t=37534), which is only being tested in conjunction with other chemos, even though earlier trials show it can be as much as 78% effective as a "stand alone" for squamous cell carcinoma. Arrrggghhh. Affectionately, Carole

Ned: The studies that show the higher the Quality of Life, the longer the Survival Rate, do not include data as to whether or how long the Quality of Life remains high, only that it was initially high. These studies also each have different definitions of Quality of Life (of which, only one that I've found so far is totally from the patient's point of view). One of the projects I've been working on (and will complete in the Lungevity Healthy Living Forum after I get back home) breaks Quality of Life factors down into segments, which will include ways to improve each. I'd have already finished, but completing this project was not a high Quality of Life factor for me, and as you and others already know, since my 01/07 dx, every decision I've made has been based on appropriate balancing of Buying Time vs. Quality of Life (your "junk" vs. "feel good"), with Quality of Life winning out on each occasion! Even though chemo has not worked out for me, I consider myself very fortunate in that, other than occasional chemo/radiation side effects, I've been relatively pain-free, which I consider a mandatory QoL factor (the reason I'm able to sun and fun in San Diego this week preparatory to jumping on a "Mexican Riviera" cruise ship next week! ) Affectionately, Carole "Quality of Life" Hammett

Hi, all. I have Sandra' private email address and telephone number. In addition to PM, I emailed her last night (no response yet); and then telephoned her this morning (left voice mail). I'll let you know the moment I hear anything, but if she went on over to Vancouver, we may not hear from her 'til she gets back (at which time appropriate disciplinary measures can be determined and taken! ) Affectionately, "Codependent Carole"

Amber: If your grandmother has donated her body to science, they won't be returning it at all; and it might be a year or more before they return her ashes (once they are done with body, the remainder is cremated). I know this because I signed up with Science Care: http://www.sciencecare.com/ My family plans on a memorial service (no body needed) and I've told them I don't care whether they claim remaining ashes or not (the family is not required to do so). Affectionately, Carole

Hey, Denise! She gave two weeks' notice. Maybe you should take two weeks? Affectionately, Carole

Coni: Hoping for a negative brain MRI report, but like Don wrote, brain is not the worst... main thing is that he be able to continue the chemo (some of the dizziness, balance, etc. may be chemo side effects). Affectionately, Carole

I am so sorry, Ree. I can only begin to imagine how difficult this must be for your family. I hope you and your mother will find hospice care as comforting and helpful as I and my family have (never hesitate to ask them about anything, no matter what the subject--their knowledge about and experience with end of life issues is enormous). Please give your grandmother a special hug from me as I know from what my own mother went through with my sister, and now with me, that surviving your children--no matter how old they are--is one of the worst experiences a parent can face. With all my love and affection, Carole

Lisa: My heartfelt condolences to Dr. Nesbitt's family, friends and colleagues. Affectionately, Carole

Numerous studies show that for lung cancer patients, the higher the Quality of Life, the longer the Survival Rate (see my postings in Healthy Living Forum), but the following article refers to a "meta-analysis" showing that while extending chemotherapy can also extend the Survival Rate, the extra cycles can likewise reduce Quality of Life. In my own case, I cannot know if the extended cycles reduced my QoL, but I do know that the attempt to extend my Survival Rate with the use of 2nd line maintenance during last 8 months definitely caused me to experience lower Quality of Life during that period with no reduction of my Survival Rate (See link to My Story below). Definitely food for thought here. Affectionately, Carole ---------------- http://www.oncologystat.com/home/news/More_Chemotherapy_Cycles_Delay_NSCLC_Progression_but_Reduce_Quality_of_Life__US.html More Chemotherapy Cycles Delay NSCLC Progression but Reduce Quality of Life Elsevier Global Medical News. 2008 Jul 29 F Lowry CHICAGO (EGMN) - The continuation of chemotherapy beyond three or four cycles results in a substantial 22% improvement in progression-free survival and a modest 6% gain in overall survival for patients with advanced non-small cell lung cancer, according to data from a meta-analysis of 13 randomized, controlled trials. These benefits, however, came at the cost of more adverse events and a reduced quality of life, the lead author of the Australian analysis reported at the annual meeting of the American Society of Clinical Oncology. "Our study supports the 2004 ASCO guidelines," said Yu Yang Soon of the Sydney Cancer Centre at the University of Sydney. Those guidelines state that the optimal duration of chemotherapy is a matter of debate. They recommend that first-line chemotherapy be limited to six cycles and stopped after four cycles in nonresponders. Published during 1989-2007, the trials in the meta-analysis included a total of 2,146 stage IIIB and IV NSCLC patients who were being treated with palliative intent. Mr. Soon and his coinvestigators classified them into three designs: - Trial design 1. Randomization to four chemotherapy cycles, or to continuation of chemotherapy until disease progression or prohibitive toxicity (two trials). - Trial design 2. Randomization to four or six cycles of chemotherapy (six trials). - Trial design 3. Induction therapy, followed by randomization to more chemotherapy or to observation only (five trials). Only two of the trials used non-platinum-based chemotherapy. Nine used chemotherapy regimens that included third-generation agents, such as paclitaxel (Taxol), vinorelbine (Navelbine), gemcitabine (Gemzar), and docetaxel (Taxotere), Mr. Soon said. Eight trials compared a defined number of chemotherapy cycles (that is, two to eight cycles) with an extended number of cycles (five cycles until disease progression or prohibitive toxicity). In these trials, the continuation of therapy beyond a defined number of cycles resulted in a statistically significant 22% reduction in the rate of progression (hazard ratio, 0.78; P less than .00001). The extension of chemotherapy had little effect on overall survival, however (HR 0.94; P = .10). Another subgroup analysis showed that the benefit of improved progression-free survival resulted from additional cycles of a third-generation chemotherapy agent rather than an older agent (HR, 0.73; P = .02). The majority of patients (1,524) received the newer agents, Mr. Soon reported. Toxicity was reported in 11 of the 13 trials, and all showed that standard duration of chemotherapy was safer, with fewer and less severe adverse events. Seven trials documented quality of life; of these, two trials favored standard chemotherapy and five found no difference between standard and extended chemotherapy, Mr. Soon reported. "Future trials should test extending treatment with more effective or better tolerated alternatives," he concluded. "Extension of adjuvant chemotherapy is also worthy of investigation." Mr. Soon reported no conflicts of interest. ---------------------

Since my dx in 01/07, I have been stating that, with one exception, all my conditions were related to treatment not cancer (neutropenia, anemia, radiation pneumonitis, osteoporosis, cataract, etc.). That one exception was the pulmonary embolism in my "good" lung in 03/07, and was considered (by me) to be an exception based on the fact that 15% of all cancer patients (regardless of type of cancer) experience blood clots. Now, however, studies are showing (see news article below) that chemo patients taking meds such as Epogen/Procrit and Aranesp are more likely to experience blood clots, and it was in 03/07--shortly before my blood clot--that I took Procrit for anemia. Ergo, it appears that my body's toxicity extended not only to chemo and radiation treatments, but also to the treatments for the treatments. Does that make me the exception to the exception to the rule, or do I just plain old rule? Affectionately, Carole -------------- http://www.oncologystat.com/home/news/Erythropoiesis-Stimulating_Agents__Survival_and_Thrombosis_Risks_Vary_by_Tumor_Type_US.html Erythropoiesis-Stimulating Agents: Survival and Thrombosis Risks Vary by Tumor Type Elsevier Global Medical News. Jul 31 2008 K Wachter CHICAGO (EGMN) - Erythropoiesis-stimulating agents appear to decrease survival and increase the risk of thrombosis in patients with solid tumors, with the degree of the effect depending on the tumor type, according to a meta-analysis of 17 studies involving more than 4,000 cancer patients. Erythropoiesis-stimulating agents (ESAs) reduced survival of solid tumor cancer patients by 6% overall and increased overall thrombosis incidence by 3.8%, Dr. Harry Raftopoulos reported at the annual meeting of the American Society of Clinical Oncology. Head and neck cancers had the biggest reduction in survival, and pelvic cancers the greatest increase in thrombosis. This meta-analysis included only randomized phase III cancer studies that were disease restricted (that is, had a homogenous population), in which an ESA was compared with placebo or control. The researchers excluded adjuvant and neoadjuvant studies because of insufficient follow-up. "The majority of studies included in our evaluation were stopped early, most often due to negative toxicity or mortality findings in interim analyses, leading to incomplete reporting of results," wrote Dr. Raftopoulos of the Monter Cancer Center in Lake Success, New York, and his coauthors. In all, 17 cancer studies were included: 4 breast, 4 head and neck, 1 limited-disease small-cell lung, 1 small-cell lung/non-small-cell lung, 1 non-small-cell lung, 2 small-cell lung, 1 gastric/rectal, 1 cervical, and 2 ovarian. The absolute difference in survival with ESA use varied by tumor type. Among patients with head and neck cancer, those on ESAs were 7.8% less likely to survive than were those on placebo/control. Among patients with breast cancer, those on ESAs were 5.5% less likely to survive. The difference for lung cancer patients was not significant, and data were not available for pelvic cancer patients. The absolute difference in thrombosis with ESA use also varied by tumor type. Among patients with pelvic cancer, those who used ESAs were 6% more likely to have thrombosis were than those on placebo/control. Among lung cancer patients, those on ESAs were 5% more likely to have thrombosis. Among breast cancer and head/neck cancer patients, those on ESAs were 4.1% and 1.6% more likely to have thrombosis, respectively. The findings add to the controversy surrounding the use of ESAs for supportive care of cancer patients. In November 2007, the Food and Drug Administration approved new wording that strengthened the Boxed Warning and Warnings sections of the labeling for Epogen/Procrit (epoetin alfa) and Aranesp (darbepoetin alfa). The revised label sections included summaries of six studies showing decreased survival and/or tumor progression in patients with cancer receiving an ESA. In January 2008, the FDA issued a communication that provided the findings from two additional clinical studies: the Preoperative Epirubicin Paclitaxel Aranesp (PREPARE) trial and Gynecology Oncology Group (GOG)-191 trial. These findings show an increase in mortality and shorter time to tumor progression in cancer patients receiving an ESA. In March 2008, the FDA's Oncology Drugs Advisory Committee (ODAC) voted 13-1 that ESAs should continue to be marketed for chemotherapy-induced anemia despite concern that their use could have a negative impact on survival in cancer patients. The panel also voted, 11 to 2, with 1 abstention, that these agents should not be indicated for patients whose cancers are considered curable. In May 2008, Amgen Inc., which makes Epogen/Procrit and Aranesp, submitted labeling supplements for these drugs to the FDA. These labeling changes were intended to clarify the FDA-approved conditions for use of ESAs in patients with cancer and to revise directions for dosing to state the hemoglobin level at which treatment with an ESA should not be initiated. On July 30, 2008, FDA issued letters ordering the company to make additional changes clarifying the indications for the drugs and directions for dosing. Other FDA approved indications for ESAs include the treatment of anemia associated with chronic renal failure; epoetin alfa has been approved for use with zidovudine therapy in patients with AIDS and for presurgical administration to reduce perioperative transfusion requirements. --------------------------

Thank you, Ree. I agree that at the present time screening is the only hope for most undiagnosed lung cancer patients. As to my attitude, I keep getting told that it's different, but to me, it's only common sense. Affectionately, Carole