The value of this website is untouchable by others. The answers you have provided to my questions have helped me in communicating with my oncologist, who though I like him very well, is not one to provide a lot of info unless I ask questions. GRACE has helped me to formulate the right questions and they have also provided me with an understanding and the realities of my disease. I read all of the forum questions and answers not just the ones that look applicable to me. I find much new information this way. GRACE also has provided me with the information I need to stand up to my disease and push my doctor to fight with me. –mikem

mikem

I found GRACE after being diagnosed with lung cancer and well into treatment with hopes for a cure. Spending time participating in the forums and getting an on-line education in lung cancer prepared me for the news I received when my scan showed a recurrence. I understood what the medical treatment options were and what it meant to me personally. My level of fear was greatly diminished even though I fully understand that my cancer is now treatable but not curable. I feel fortunate to be able to share this experience with the doctors, survivors, and caregivers that populate this site and give valuable information and comfort every day.

ts

For me, GRACE is THE resource on cancer treatment, management and research. The GRACE doctors that so generously give their time to patients are not only cutting-edge experts in oncology but they also give hope and reassurance to those that use GRACE. My sister was newly diagnosed with stage 4 NSCLC and I can’t imagine what I would have done without the help of Dr. West in particular, who was nice enough to answer promptly all of my questions. If anyone deserves funding, it is definitively GRACE.

Myriam

fortmyr

I am new to this website and am so grateful to have found out how others have coped with Tarceva side effects (I started Tarceva 3 days ago). It’s very helpful to be read intelligent and thoughtful responses from experienced and obviously competent professionals who are responding to intelligently framed questions and concerns. I am impressed by the other patients, by their concerned family members, and by the kindness of the responses by the oncologists and other professionals. It helps to compare what I read here with how my treatment is proceeding (thank heavens there are only minor differences), and I’m grateful for the questions I can ask my oncologist. Thank you so much.

Shy One

How amazing it is to ask a question about this frightening diagnosis - lung cancer - and have comments from experts scattered around the US and beyond. It feels like there is a team at work — not just one, local oncologist. The website is an incredible educational resource. Knowing more about the disease, other treatments, clinical trials,… is empowering and definitely has made a difference in my own family’s particular journey. “Cancergrace’s” impact goes so far beyond any site which we consulted in the beginning, like American Cancer Society or others. I don’t know how all the physicians who participate here find or make the time to respond to so many of us, but I/we truly thank them.

jmnich

I have found Grace to be one of a kind with a depth of searchable information that is excellent and supporting the problems I want to solve regarding my wife’s lung cancer.

I have been able to sit in on webinar’s where I have learned new knowledge that I’ve shared with the oncologists. Though he was aware of what I had learned he was able to see the depth of our understanding. What I believe is key to the educational aspect of Grace is the fact that feels academic and non-commercial. It gives me a sense of participating in a peer-to-peer environment. It does not feel as if it is speaking down to me nor is it selling me something. I am here to learn and Grace is offering me knowledge on my terms equal to my understanding. And though I have not asked questions I would imagine they would be answered.

Educationally, if I may offer my opinion, Grace is and should position itself as a PubMed for lung cancer for patients and HC professionals. Focused and clear.

Mark116

GRACE has been helpful to me in more ways than I can count, but here are a few:

- The opportunity to ask questions to the skilled medical faculty has helped me and my wife immensely, from diagnosis to treatment choices, management of side effects and evaluation of new therapies. Although our oncologist is very patient and answers all of our questions, appointment time with him is not unlimited and questions often arise later. Because of the guidance I’ve received from the GRACE doctors, we’ve discussed issues with our doctor that we would not have known were important or relevant. In addition, I can ask frank questions here which I might not want to ask at an appointment.

- The collected knowledge found in the archives is much more extensive than anywhere else. I have often used the hundreds of topical posts written by the GRACE faculty as a reference. This has allowed us to have intelligent conversations with our oncologist, without the need for him to explain basic principles to us, resulting in more in-depth discussions.

- The interactions among GRACE members have helped me to cope psychologically with my wife’s cancer, as well as providing valuable information (again, collected in voluminous archives) from the real-world experiences of patients and caregivers. GRACE truly feels like a community to me and that has a value that can’t be quantified.

Jim

JimC

I am new to this forum and am greatly appreciative that it exist. My Dad was diagnosed with Lung Cancer about 2 months ago and I have found this to be the best resource on the internet for up-to-date information. The fact that anyone can get input from expert oncologist’s without having to fork out 100’s of dollars is mind-boggling. It is a service that is not only necessary for people that are desparate for information for themselves or their love ones but it also provides a forum for coping and support that is personally satisfying in deep amd meaningful ways. I plan to donate money when I can and hope that institutional grants will keep this online forum alive for many more years. Thank you for everyone that participates and helps aid online members like myself in fighting these devastating diseases- RachelK

rachelk

In the past three years there have been times where only GRACE or the previous OncTalk maintained my sanity. I got answers here that I could not seem to get elsewhere. Answers that some of my doctors had no knowledge of.
My journey now is less complicated than prior, but I still visit this site daily. As more doctors have joined and the questions/topics have become more “involved” (for lack of a better descriptive), I do not post very often any more. But I still get that special feeling of Community when I come to this site. This is home for me, where I can get comfort in my disease because of the incredible knowledge and kindness of Dr. West et al.
Foxy

foxy

When first diagnosed I frantically searched on line for information about NSCLC. Almost everything I found was either very general and vague, written for the general public, or very technical and complicated, written for the medical professional. And then I found GRACE. At last a resource that provided specific information for the patient, in patient friendly language, in a patient friendly format. I have come here for no nonsense, straight forward information that provides me with a sense of control. Thanks to Grace I can make intelligent informed decisions about my treatment in conjunction with my Oncologist. Knowledge is indeed power, and Grace provided the knowledge I needed, to feel empowered while faced with an overpowering, overwhelming, diagnosis.

Terryl

I believe that one a priority of lung cancer patients should be learning about their disease. That was almost impossible for a layperson prior to the advent of OncTalk, which evolved into GRACE. When I was diagnosed almost five years ago with stage IV lung cancer at age 51, I was like 95% of the population who thought lung cancer’s only victims were very old people whom I envisioned in a cloud of smoke. I was shocked that there was no cure for me and further devastated by the lack of information about treatment choices and that there was virtually no “community of support” for lung cancer patients and their families.

GRACE has provided me with the ability to learn not only about treatment options, but has opened my eyes to how complex lung cancer is and how difficult decisions about treatment can be. The information has allowed me to know what to ask my doctors and I feel that I have been provided with many more options that are “within the standard of care” for someone like me. Best of all, whenever I ask a question, it is answered with professionalism, kindness and a pleasant straightforwardness that is unique.

I do not think I am overstating the case to say that my relative longevity living with this disease is partly because of the knowledge I have gained from Grace. Dr West and his team provide an exceptional gift to those of use struggling with lung cancer.

myrtle

Adenocarcinoma and NSCLC became part of my everyday vocabulary in the fall of 2006, just as OncTalk (the predecessor of GRACE) was becoming part of the online world. I was already well into first-line chemo by the time I first encountered OncTalk, and I was so impressed by the expertise, openness, and responsiveness of this “Dr. West” that I made onctalk.com a priority stop in my daily web surfing.

For me it’s been something like getting a “second opinion in advance.” Of course Dr. West (and now the other faculty members) cannot give medical “advice” or render an opinion specific to my or anyone’s individual condition, but all the pros, cons, and considerations are laid out so objectively that I feel well prepared for the next discussion with my own oncologist and comfortable with any treatment decisions that may ensue. Somewhere around my fifth Taxol/Carbo/Avastin cycle Dr. West posted an article about the useful duration of first-line chemo, pointing out that for the majority of patients most of the benefit has been attained after four or so cycles, and after that point the increasing side effects begin to outweigh any additional benefit obtained. That article was very timely, because a few days into my sixth cycle I had a sudden onset of neuropathy affecting both feet, something I’d heard about but hadn’t experienced myself. By the second day, as my wife was digging her late father’s walker out of the closet, I was tracking down my oncologist by phone at his other clinic. He called in a prescription for Neurontin to our local pharmacy, and catching the problem early enabled me to fully recover from a situation that could have been seriously disabling. If I hadn’t had this background information from OncTalk, which included a Q&A exchange with Dr. West, I might not have been as aggressive in contacting my own doctor.

In 2007 Dr. West announced his intention to expand the site beyond a one-man operation, enlist the participation of additional lung cancer experts, and eventually begin to address other types of cancer. He asked for ideas on what this new site might offer, and thus began an extensive email exchange between Dr. West, myself, and a few other OncTalk patient/caregiver members. He told us, “You have a lot of valuable insights and will tell me what you’d like and not just ratify what I’m doing. I want more of that.” At first I was skeptical that he could find other leaders willing to carve time out of their busy schedules to maintain an effective online presence. But as GRACE made its appearance in 2008, I was delighted to see that I had been wrong, and I continue to be amazed at the quality and timeliness of the faculty’s article posts, their follow-on comments, and of course their responses to forum questions. To quote from the previous comment by Myrtle: “whenever I ask a question, it is answered with professionalism, kindness and a pleasant straightforwardness that is unique.”

Ned

recce101

Visits to GRACE have helped me prepare for dicussions with my oncologist concerning types (CT versus MRI) and frequency of scans. The podcast with Dr. Camidge on 2/17/10 has led me to pursue molecular/genetic testing of my tumor. Dr. West’s interview with Dr. Manning (Radiologist) provided me with information and reassurance I wish I’d had during the many scans since my diagnosis. That interview should be mandatory viewing for lung cancer patients. These are but a few specific examples of the valuable place GRACE holds in my life right now. There have been so many other examples: answers to questions about side effects of Alimta or Tarceva, how best to use pain/anti-anxiety/anti-constipation meds (Thank you, Dr. Harman). Drs. West, Weiss, Pinder, and Pennell have been fantastic as has Leah de Roulet — and the many patient/caregiver experts who’ve provided advice and reassurance from their experience. GRACE cannot be underestimated or undervalued as resource for those with lung cancer at all stages. It is simply and amazing site. Forgive the obvious: Amazing GRACE,

Catharine

Grace is inspirational - real people, real helpers. And so responsive to individuals when sometimes we feel lost in a sea of medical jargon.

gn21

GRACE has been invaluable to my family and me. During the first few months after my mom’s diagnosis, while I was floundering at sea, GRACE was my lifeboat. I was thrust into the role of medical distiller/translator for my family and advocate for my mom, but I knew nothing about lung cancer, and her case was so advanced that there was no time for missteps in her management. I had been frantically trying to learn from more general cancer websites and from trolling through PubMed, but I didn’t find much of immediate use on the other websites and was overwhelmed by the volume of lunch cancer publications in the search engine. Our oncologist seemed too busy for questions, but we were all desperate for answers. Then I found GRACE. While I didn’t like all that I learned on GRACE– who wants to hear about how poor many of the outcomes are?—I was amazed by the dedication of Dr. West and the other contributors, heartened that there are people working so passionately to improve lung cancer outcomes, and empowered by the information I gleaned. Without GRACE, I fear we wouldn’t have had the gall to push for EGFR testing, or the evidence needed to persuade my mom to drive 5 hours each way to a new oncologist who would act on her EGFR test results. Doing so has given us the most precious gift, and one we couldn’t have imagined last summer when things were going so badly: more time with our beloved, while she is feeling great and is able to do nearly everything she wants to be doing. And although it remains difficult to read about marginal successes and outright failures of new studies on GRACE everyday, doing so, and being inspired and comforted by the larger GRACE community, has helped me and my family find some peace, some sense that we are doing absolutely the best that we can for my mom.

Dragonfruit

There’s more to why I appreciate Grace than I’ll discuss here but for starters…

Grace educates me so I can have a solid beginning understanding of treatment options and the decision making process. Grace forums and posts have become my resource of choice. I have the utmost trust in my husband’s oncologist but the information I get from him doesn’t come easy and often comes from my ability, thanks to Grace, to ask the proper questions. As the wife of a cancer survivor I’ve learned the importance of knowledge because I can’t count on having any control over a devastating situation.

Nothing compares to the compassion, humor, hope, and honesty evenly distributed in Grace discussions. When I first heard we were more than likely dealing with cancer it was 6 weeks before a final diagnosis and 6 weeks before being referred to an oncologist. I surfed the internet educating myself. When I realized that the most informative, easy to read articles came from the posts at Grace I accessed the forum. I don’t visit other discussion forums very often because I usually am looking for medical information. From no other forum, online or off, am I confident that I’ll get the consistent quality information I get from Grace.

Grace takes communication seriously and presents information from as many perspectives as needed. I have found on several occasions that questions were asked on the forum, discussed by several members and faculty; and then Dr. West or another professional discussed this topic in a detailed post and discussed more. This level of expert discussion, written in laymans’ language, doesn’t exist anywhere else. This level of discussion is what allows me to understand the decisions of my husband’s fabulous doctor and allows me to find some peace that would otherwise be out of my reach and out of my control. Thank you for some control and some peace.

catdander

I don’t know how I would have handled my NSCLC Stage IIIb diagnosis these last three years without GRACE/OncTalk. Having dedicated doctors led by Dr West who are passionate about empowering patients with the latest information on treatments and research findings has meant so much to me. It gives me a sense of peace to learn what the next steps in my treatment are likely to be. Reading other patients’ experiences in handling side effects is a real bonus. I think most of us at this site are seeking knowledge about all aspects of LC and that’s exactly what we’re able to get.

judys

I would like to add my two cents, which is a HUGE thank you to the kind doctors and moderators who so generously have given me, via their website and personal responses, an expanded knowledge base of my disease. I look to Cancer Grace each and every day and have printed countless threads and those wonderful podcasts. The searchable library here is awesome.

I am so grateful to these doctors who already have career demands on their time and have personal lives to live, yet find the time seemingly every day to help those of us who need them.

And the survivors here inspire me day after day, giving me hope and encouragement. Put a “price” on that, will ya?

Denise

icandoityesican

GRACE is the most authoritative, timely, and responsive site related to lung cancer, by far. 6 years ago I was dx’d with NSCLC. In a small community that is plenty of time for the “word to be out.” Thus, from time to time I am approached by someone impacted by the disease. One of the best bits of information I offer them is the address of this site.

Equally important is the knowledge I have gained on this site that has facilitated healthy discussions with my oncologist. These discussions have been so productive that on a visit he will often start with “What do you hear from the west coast?”

Barry Haigis

Thank you all for your great comments, which are extremely encouraging and should really strengthen our case in getting grant support. I can only imagine that anyone reading these comments will be genuinely moving to the person reviewing our grants.

Dr West

I like to think of myself as a fairly calm and even person, but I find when I read other people’s posts here on your website, I become even more calm and relaxed and feel connected to other people experiencing cancer and Tarceva. The suggestions are very useful, of course, and the encouragement offered by the oncologists as well as other people with cancer are very helpful. Please keep on suggesting getting second opinions where there’s a question. I did, and my treatment has turned around. Thanks for the time, expertise, energy, and tears you obviously spent here.

Shy One

I have recieved a great deal of information, relief and comfort from the oncologists replies to both my posts and the other peoples posts. Dealing with my fathers illness has been the most difficult and heartwrenching thing I have ever had to deal with in my life. I found this website surfing on the internet at 2:30 AM and I am extremely grateful. Grace has given me the information to make suggestions, ask questions and just be able to have confidence in the care my dad is recieving up to now. I am so grateful that these people (who obviously must have lives with many other obligations) take the time to answer a question at 10:00 PM (or later) so that I am able to sleep in peace that night.

kayrem

I would like to add and illustrative example of the value of Grace. Please see this discussion Abraxane Bests Taxol in Response Rate for NSCLC: What Might this Mean?

You’ll see comments and responses in this topic that added to discussion and increase the knowledge for those interested. It is truly a Community of Practice example where people with similar interests share knowledge and experience to expand a common understanding. This does not happen on many sites and demonstrates not only what Grace offers but the depth of those who use this site. Remember information becomes knowledge with the additional of experience and reflection that is enabled by people.

Mark116

Grace is the website i always check, the site that gives the newest information there is and if you have a question you can always find or get an answer very quickly. In holland i couldnt find a great website like this which is so up to date and without spam. I think its really professional end without grace i would actuallly have a problem. I couldt handle the fact of being so sick and not able to get the latest en reliable information about the disease I have. I can always ask my doc, but here you seee the opinion of other oncologists, other patients, and even social workers.

Like the rest of the responders i really really appreciate all the work people do for this site ~

Caroline
dc NSCLC Sept 2008 .
Age 30 years

Carolinetop