CaroleHammett

Linda: SUV is the abbreviation for "standardized uptake value," which is based on the amount of metabolic activity resulting from the pre-scan injection of irradiated sugar. My first PET scan in 01/07 showed my 5 cm. tumor had an SUV of 14.4, which was described by radiologist as "intense" hypermetabolic activity. I afterward underwent concurrent radiation and chemotherapy and by the summer of '07 the tumor had shrunk to 2 cm. By 12/07, however, it had begun to grow again and my second PET scan in 01/08 showed the tumor had an SUV of 9.7, which was descirbed as "homogeneous intense." My third PET scan, on 04/29/08 stated that the tumor "remains very hypermetabolic" with a maximum SUV of 13.7. My fourth and last PET scan, on 07/24/08, showed that the SUV remained at 13.7. This scan also measured SUV (much lower #s) for various lymph nodes as well as new nodules in both lungs (also low #s) and "a new markedly hypermetabolic hypodensity in the medial left lobe of the liver measuring approximately 9 mm in diameter with a maximal standardized uptake value of 10.9." It is my understanding that the higher the SUV, the more aggressive the cancer. In my case, my NSCLC is squamous cell (rather than adenocarcinoma, etc.), which is usually slower growing, but mine, unfortunately, is "poorly differentiated" (a grade 3 tumor), which makes it more aggressive regardless of type. Sorry I can't be of more help, but I think the SUV numbers have to be looked at in conjunction with the sub-type of lung cancer, the grade of the tumor, etc. I hope all goes well with your Mom and her treatement. Affectionately, Carole

There are numerous government-approved studies confirming that acupuncture helps reduce chemo side effects, particularly nausea and vomiting. Unfortunately, I did not learn about this until months after I'd finished my initial chemo (in 05/07); however, acupuncture also helps with numerous other facets of chronic illness, including insomnia and pain, and so in 10/07, I began receiving acupuncture regularly. I credit it with reducing my pain (from stress fractures resulting from Prednisone-induced osteoporosis) as well as my insomnia (also Prednisone-induced), and have continued seeing an acupuncturist every week ever since (I also believe it has helped with stress reduction, which in turn contributes to my overall feelings of well-being). Hope this helps (and thanks, Randy, for pulling up all those links!). Affectionately, Carole

Teri: Your are not "stuck in neutral." This is merely a pause for reflection and to gather strength before moving on to the next phase of your life. All of us experience "pauses" before moving on. Your analogy is good though: Whether it's a vehicle or life, you can't shift gears without going through neutral--even if you have an automatic transmission! ) So just hang in there, Teri et al, because it's definitely going to get better... just not as quickly as you all would like--as I remember too well from the death of my sister. Affectionately, Carole

Janette: My deep and heartfelt condolences to you and your family. Affectionately, Carole

Cat: I so understand creating memories--both for us patients and our family members. Good on you for a wonderful project and have a wonderful time! Affectionately, Carole

Ree: You and your family continue to be in my thoughts. I am sorry about your mom's condition, but soundsas if you are all doing what you can. Take care. Affectionately, Carole

Sandra: Even if it is nerve pain, I'd certainly consider acupuncture if I were you--and not just for pain, but also as an anti-stress measure. I began acupuncture in 10/07 due to insomnia problems (which were exacerbated almost immediately), but then continued having sessions due to the fact that I continue to be "inexplicably" relatively pain- and fatigue-free. In the meantime, I sure hope the Gabapentin (Neurontin) helps you! Affectionately, Carole

Welcome aboard, Gabby, and thank you for going the extra for Lung Cancer Awareness. I'm sure you will find the folks on these boards to be immensely supportive, both emotional and informational. I wish your Dad the very best. Affectionately, Carole Life is not measured by the number of breaths we take, but by the moments that take our breath away.--George Carlin

Welcome aboard, Christie. This is a great group of people and I'm sure you'll find great support here--both emotional and informational. Affectionately, Carole

There have been extensive discussions in other forums on our message boards regarding the problem of patients not being admitted to hospice until the last minute (reducing their Quality of Life at the end of their lives). One explanation for this, included above, but not mentioned in these earlier postings, is that patients who are receiving chemo or radiation for the purpose of slowing or stopping progression (as versus for "comfort care") are ineligible for hospice. See also recent earlier Quality of Life article and discussions at http://www.lungevity.org/l_community/vi ... hp?t=38290 Carole I'd rather die while I'm living then live while I'm dead.--Jimmy Buffett

The following study shows that heavy smokers who develop lung cancer are less likely to respond to 1st line cisplatin/etoposide chemotherapy: I was a 40+ pack year smoker until my dx in 01/07, at which time I quit preparatory to undergoing concurrent radiation and cisplatin/etoposide therapy. My body did not tolerate either the chemo or radiation, but one or both did shrink the initial tumor and involved lymph nodes. By 12/07, however, all were growing again and by 07/08 I had mets to my liver, more distant lymph nodes and my 'good' lung. It had occurred to me some time ago that those of us who were heavy or long time smokers already had compromised lungs and were thus less likely to benefiit from chemo or radiation, but this may go beyond that. Carole

Barb: I can't help but compare this to the U.S. where the FDA went all the way to the Supreme Court in order to ensure that dying cancer patients (Stage IVB) couldn't take experimental drugs because the drug might kill them. Affectionately, Carole I'd rather die while I'm living then live while I'm dead.--Jimmy Buffett

http://www.oncologystat.com/journals/jo ... Group.html August 19, 2008 OncologySTAT™ One Source, Many Resources Use of Cisplatin-Based Chemotherapy in NSCLC Lung Adjuvant Cisplatin Evaluation: A Pooled Analysis by the LACE Collaborative Group J Clin Oncol. 2008 Jul 20;26(21):3552-3559, JP Pignon, H Tribodet, GV Scagliotti, JY Douillard, FA Shepherd, RJ Stephens, A Dunant, V Torri, R Rosell, L Seymour, SG Spiro, E Rolland, R Fossati, D Aubert, K Ding, D Waller, T Le Chevalier, LACE Collaborative Group Evidence regarding the benefit of postoperative adjuvant chemotherapy in patients with non–small cell lung cancer (NSCLC) is conflicting. While some studies show improved overall survival (OS), others do not. Therefore, the Lung Adjuvant Cisplatin Evaluation (LACE) study was undertaken to identify the most beneficial therapeutic approaches in these patients and to determine whether subsets of patients may receive improved benefit from adjuvant chemotherapy. The LACE study was a pooled analysis of data from 5 randomized controlled trials, each enrolling >300 patients with resectable NSCLC. All of the studies included patients who received cisplatin-containing regimens. Variables examined included baseline patient and tumor characteristics, treatment toxicity, and outcomes. The primary end point was OS. Secondary end points were disease-free survival (DFS), number of deaths attributable and not attributable to lung cancer, OS and DFS as related to type of treatment, and toxicity. The study analyses were based on data from 4584 patients. Median follow-up duration was 5.2 years (range per trial, 4.7-5.9 years). Chemotherapy vs no chemotherapy resulted in a significant benefit to patients in terms of OS (hazard ratio = 0.89; 95% confidence interval [CI], 0.82-0.96; P = .005); chemotherapy reduced the risk of death by 11%, with absolute benefits of 3.9% and 5.4% at 3 and 5 years, respectively. DFS was also greater with chemotherapy (HR = 0.84; 95% CI, 0.78-0.91; P < .001), with absolute benefits of 5.8% at both 3 and 5 years. No heterogeneity of these results was noted among the trials (P = .37). Data were collected only for the maximum levels of toxicity, and not all trials reported all levels. Toxicity rates varied greatly among the trials. The overall rates of grade 3 and 4 toxicity were 66% and 32%, respectively. Neutropenia was the most commonly reported toxicity (9% and 28% for grades 3 and 4, respectively). Chemotherapy-related deaths occurred in 19 patients (0.9%). The number of deaths attributable to lung cancer was lower in the chemotherapy group than in the no-chemotherapy group (5-year absolute benefit, 6.9%; HR = 0.83; 95% CI, 0.76-0.90; P <001> .02 for OS and DFS, respectively). However, the total dose of cisplatin was significantly higher in patients treated with vinorelbine (ie, >300 mg/m2 in 86% of patients vs 54% of those treated with other cisplatin doublets and 0% of those treated with a cisplatin triplet). This may have skewed interpretation of the results; therefore, they should be regarded with caution. In the cisplatin-treated patients, both tumor stage (IA) and performance status (PS = 2) were associated with significantly longer OS and DFS (for tumor stage, P = 0.4 for both OS and DFS; for performance status, P = .009 for OS and P = .01 for DFS). The results indicate that cisplatin-based chemotherapy prolongs OS and DFS in patients with fully resected NSCLC. However, neither an optimal therapeutic approach nor factors predicting improved benefit emerged from this analysis, except for tumor stage and performance status. Future investigations should explore whether combining cisplatin with specific chemotherapeutic agents provides improved outcomes and whether combining radiotherapy with chemotherapy is beneficial. This summary was written by the OncologySTAT editorial team. Elsevier Copyright © 2008

Hi, Barb. I, too, benefited from Dr. West's explanation re clinical trials, including drawing the inescapable conclusion that the pharmaceuticals are far more interested in getting the biggest bang for the buck than saving the most lives. Affectionately, Carole

Hi, Mary. I'm back from trip, having seen pulmonologist right before I left. She said same thing as you, that #1 is exercise, particularly walking. Because of the Prednisone-induced osteoporosis I developed last summer, I have been under doctor's orders not to walk (due to multiple stress fractures), which is why I've been so intent on breathing exercises. On the other hand, by December, we (my doctors and I) knew that the probable primary caiuse of stress fractures (all sacral) was not walking, but sitting (two of the fractures happened after long road trips and the third after two two-hour sitting sessions in Rocky Mountain Cancer Center conference room--the fourth was due to a "coughing fit"). I'd been playing it cautious ever since, but while on this trip I walked like crazy (not to mention a half day's sailing on a 75 foot boat, during which I took the helm for at least an hour) with no damage done, so I've now decided to heck with it and am taking up walking again (I was walking 2 mi. daily pre-osteoporosis). I will continue to do my daily breathing and hot tub exercises (on my way out there now), but am sooo glad walking's back on my agenda (this is a beautiful old town and walking--rather than driving--has long been a pleasure for me here). Hope you and your hubby are both doing well. Affectionately, Carole

Sharon: A belated welcome to our group, best wishes and good luck! Affectionately, Carole

Hi, Lil. Welcome to our group and best wishes for your dad's treatment and prognosis. Affectionately, Carole

Lynnel: Congratulations on achieving 4 years NED and thanks for posting about yourself (always heartwarming to the rest of us to learn of "victors"). Affectionately, Carole

Hi, Christina. Welcome to our group. Sorry you have the need to be here, but it is a great site for both emotional and informational support. My best to you and your husband. Affectionately, Carole

Welcome, Barbara, and best of luck to you. Affectionately, Carole

Hi, Gloria. A belated welcome to our group, hopes that your father escapes the worst of the chemo side effeccts (many do) and that the chemo kicks the heck out of his cancer cells! Affectionately, carole

Hi, Katie. You've definitely come to the right place for both informational and emotional support. Best wishes to you and your dad and hopes that the Tarceva will work for him. Affectionately, Carole

Sorry you got hit again with side effects, Sandra. I know the feeling and not fun, but this Gemzar pain sounds far more excruciating than any of the chemo side effects I had to deal with. Carole

Tarek: My heartfelt condolences to you and your family. Affectionately, Carole

Just a quick note to let you know that Dr. West did reply to my query (see above link), but basically said, Sorry, but no banana. I suppose I could try contacting Pfizer directly, but it appears that the problem is not limited to Pfizer, but extends to FDA as well; i.e., a no-hoper. Will keep you posted if anything new, but the good news in the meantime is that despite spread, I'm still feeling great! Carole Dream as if you'll live forever; live as if you'll die tomorrow.--James Dean