Surveyor

I’ve been a phone buddy with the Lung Cancer Alliance (lungcanceralliance.org) for a few years and because of this association, I’ve been asked to attend the American Society of Clinical Oncology (ASCO) Update Committee for the ASCO unresectable NSCLC guideline as a patient representative panel member. Clinical practice guidelines serve as a guide for doctors and outline appropriate methods of treatment and care. I was told I would attend a meeting in Alexandria, VA on Oct. 23, 2008, (ASCO covers travel and lodging). Part of my responsibility would be to present the perspective of people affected by unresectable NSCLC. It has been a few years since I received intensive chemo infusions, so I would really appreciate recent hospital/oncologist experiences. Could you help me with any & all ideas you think I should contribute? It looks like my input will be primarily limited to the following areas: 1. A manuscript on Clinician-Patient Communications 2. Provide feedback on patient-related Clinical Tools & Resources I plan to prepare a list of all our thoughts to present to the committee. Thank you!

Hello glo821. I just noticed your post. I’ve been AWOL for the last year – just tired of even thinking about the battle. Your father’s diagnosis is very similar to mine. After your father completes chemo, I would suggest you get a second opinion. There is some evidence that a single metastasis to the adrenal gland may be operable with good survival results. I did a Google search just using “NSCLC adrenal” and found a couple of published opinions stating this fact. http://cat.inist.fr/?aModele=afficheN&cpsidt=17208182 http://meeting.chestjournal.org/cgi/con ... 0/4/274S-b http://sciencelinks.jp/j-east/article/2 ... 070096.php I’m sure you can find more opinions to justify an aggressive approach to his cancer fight.

My best to everyone. I have not had anything additional to contribute to our common battle, but still watch the board as time permits. I know the helpful posts on this board were the primary reason I've survived. The board's search function can be a life saver. I'm hoping to return to work in the near future.

Welthy is correct – you need to be aggressive. I would do # 3 or # 4. AZD2171 A substance that is being studied in the treatment of some types of cancer. It belongs to the families of drugs called angiogenesis inhibitors and vascular endothelial growth factor receptor (VEGFR) tyrosine kinase inhibitors.

After replying to Heather_T’s post (below) I remembered I still had some pills left over from my Chinese Herbal Medicine phase. I had enough to do my old full routine of pills for awhile and noticed that my energy level was significantly improved after starting. It was a subtle feel good and keep on trucking type of energy that I didn’t notice until I tried to go to sleep! Going to sleep took longer than usual. Also noticed that I didn’t consciously think about being tired (as usual) during the day. After reviewing the pills I took, I imagine it was the Shi Quan Da Bu Wan. By the way Heather_T, one website did describe the product as “Shi Quan Da Bu Tang (Wan).” I noticed there is a lot more information on the internet now than there used to be using Googles “advance search” and entering the products name. Besides more information describing the products, there are many more places to economically purchase the products. I’ve been very lucky and blessed in my cancer battle. I saw a Chinese herbalist and began following his prescriptions after chemo, 1st bout with radiation and finally thermal ablation in early 2005. I wonder if some of my good health can be attributed to Chinese Medicine?? After reading more about the adjunct benefits of Chinese Medicine after surgery, radiation and chemo, I’m going to resume taking some of the medicine. What do you think about resuming the canelim, Nei Xiao Luo Li Wan and Shi Quan Da Bu Wan? For more information about dosage & ingredients, please go back to the thread started on Aug. 30, 2005. I would sure appreciate any posts that might help us all make decisions about this alternative/supplemental medicine. We need to turn over every rock we find and examine the ground beneath it in this quest for health after our encounter with the big “C”. If the western medicine, we’re all using, had all of the answers, the survival rates for lung cancer would not be so dismal.

While researching hospitals/surgeons to have my adrenal metastasis removed (adrenalectomy) in California, I ran across the following that seemed interesting to me. Essentially, the studies tell me that Celebrex is useful to minimize the spread of cancer from circulating tumor cells as a result of surgery. In an abstract: “Surgical manipulation of lung cancers may increase circulating tumor cells and contribute to metastatic recurrence after resection. Cyclooxygenase 2 is overexpressed in most non–small cell lung cancer and upregulates the cell adhesion receptor CD44. Our goal was to examine the effects of perioperative cyclooxygenase blockade on the metastatic potential of circulating tumor cells, CD44 expression, and adhesion of cancer cells to extracellular matrix. http://en.wikipedia.org/wiki/Celecoxib http://jtcs.ctsnetjournals.org/cgi/cont ... /132/2/297

Hello Heather_T Not too many on the board seem interested in Chinese herbs. You might look at my post, “Chinese herbal medicine” on this Alternative and Complementary Therapies forum on Aug. 30, 2005. Many of the replies may give you search ideas. I was taking Shi Quan Da Bu Wan for awhile – I think this may be close to your questioned drug. After about 6 months, I stopped taking all but Canelim tablets (ping xiao pian) and have recently stopped taking these (since 9/11, they are difficult to get through customs). I don’t know if any of the Chinese drugs helped, but I have done pretty well in my cancer fight. I think part of surviving this disease is looking at all alternatives and not counting on the western doctor, you happen to draw in this cancer lottery, to know all of the answers. Hope this helps.

For Dr. Earl Surwit's herbal regimen that Dr. Phil Berman has taken for the last 3 1/2 years, please see: http://berman.redtoenail.org/supplements Any comments or thoughts about these supplements would be appreciated.

I received an email from a newly diagnosed Stage IV lung cancer patient asking questions in regards to an earlier post about remission and other things. I ended up spending some time writing to her and thought some of the information may be useful to other new readers to this board. Forgive me if the post comes off as “he’s a pompous a__” – I ask your forgiveness. I edited the following letter to remove identifiers. I would be delighted to help you in any way I can. Your email surprised me because I’m a phone buddy (Lung Cancer Alliance) to a lady in _______ named ________, but who is also fighting our disease. I will be happy to answer any question you may have, but be forewarned; I don’t try to sugar coat things. I think, by you taking the time to write, you want to be a survivor. LC Help is a wonderful website. The site search engine is a little clunky, but you need to learn to use it. You might want to search all of my (surveyor) posts to get an idea of who/what I am. I generally try to give something back to the community. I’m not too much on the “feel your pain” type of response because it doesn’t help us get well! I guess most people need the good will from others who have become internet friends, but I’m an old Marine and just figure sympathy doesn’t cut it. I honestly think most survivors are 1. Lucky 2. Don’t leave any stones unturned 3. Are aggressive if necessary to get the best care and not waste precious time. 4. Totally committed to getting well. The reason I made that post was because I honestly don’t think we have remission with Stage IV non-small cell lung cancer. The chemo seems to only stop the cancer for awhile with most stage IV, NSCLC patients. Many of the “medical oncologists” think the only way to fight this beast is with chemo. Many patients with other cancers seem to have remission (long periods of being completely disease free) but I don’t see many people who were stage IV when diagnosed, become completely cancer free (remission in my opinion). I wish I had your diagnosis & history. If you put it on the LCHelp website in your “signature,” it will automatically be forwarded on emails, posts on the board, etc. I think it is absolutely necessary that you keep a history of your treatment. The website is just a good synopsis and easy to update. You need to know what, when, how much, why, etc. during any treatment. You need to get and keep copies of all of your tests. If you start going down hill or are not improving, you will need these for a second opinion. I actually prepare and give my version of my medical history to new doctors who seem to appreciate it. Back to the rambling point! With stage IV, you have mets. Generally, the doctors will give you chemo, chemo and chemo. From what I’ve seen, you’ll feel terrible, terrible and terrible – live about two years of poor quality life and then things go to pot – Gosh, there ought to be a better way. I got LUCKY. I moved back to Bakersfield to get my wife near friends and family. Before going to Sacramento for the continued chemo, I had to get blood tests. While getting blood tests at a local cancer clinic, a fine radiation oncologist there told me to come see him when I finished chemo. I think he saved my life because I would have listened to the first doctors and stayed on the “chemo train.” The oncologists in Sacramento just wanted to “observe” me after chemo. I still had cancer, to heck with observing, lets get on with trying to kill this thing that wants to kill me and I had accidentally found a doctor who was willing to try. He didn’t pay attention to the so-called protocols (that seem to me to just protect the doctors) he wanted to try to cure me. He almost succeeded – my lungs have been clear since his first series of treatments – we’re still fighting a stubborn adrenal metastasis. We need to make this disease “chronic.” It will take various continuous & watchful treatments to keep it from suddenly taking over. You need to learn what SUV’s are. Go to the advanced Google scan. Put in “all words” and things like suv, pet, cancer etc. Read the hits. Before long, you’ll know what those doctors are talking about. You need to know what your SUV’s are and when they are going up and where the “hot spots” are. A PET scan will show the intensity of the cancer and where it is. A CT scan can’t tell the difference between a dead tumor and one that is active – a PET scan can. X-rays are cheap and don’t reveal much information. Get copies of your blood tests. See what is down and what is up. “Google” the test abbreviations so you know what is being measured. Have you been tested for “cancer markers?” Many on the LCHelp board don’t believe they help, but I do. My 2nd oncologist tested and found CEA to be relative to my disease. When my CEA goes up, my cancer is kicking up! After treatments, my CEA goes down. Determine what may work for you - like radiation, different people, different results even with the same machine & same treatment. Rereading your letter. You usually have to ask the doctors/nurses for copies of the tests. Google the SUV values. I think if they’re much over 5, you have active cancer. 2 –3 can just be background noise. There has been discussion of SUV values on this board. I haven’t paid attention to my SUVs for the last year – new cancer clinic who is giving me the mushroom treatment, but it fits my current treatment goal at this point - they recommended me for surgery, which was not part of the protocol at first. Ask specific questions. If the radiologist doesn’t give the SUV value, ask for it specifically. A general “slightly higher” really cannot be quantified. I work with numbers – want to know my numbers and think you should too. How else can we measure our progress or condition. Western medicine is supposed to be scientific; i.e., quantify with numbers. Most western doctors won’t tell you anything that has not been extensively tested and proven to work or be true. However, I look at the chemotherapy results that may extend our lives a few months on average and the insurance company will be billed $100,000 for six cycles – yet they don’t want you to use anything that is not thoroughly tested. To heck with a few extra months, lets try to find a procedure or medicine that can do better. You are right about learning quick. Learn all you can. The internet is a great source of good information and useless quack information. Wade through the chaff. There are a lot of so-called cures out there that will take your money and watch you die. I believe in conventional medicine, but I also believe supplements help. Many doctors don’t want you to take supplements and I think they are doing their patients a disservice. There are also medicines out there that have been found to help our cancer fight like celebrex, statins, acid reflux medicines, etc. If you want my list of supplements, just let me know. Don’t sit back and think the doctors will take care of you – you need to be on top of what is happening. Yeah, it is nice to stick our heads in the sand and hope for the best or trust somebody with a good sales technique, but all of a sudden this disease will make our life miserable. I’ve been very blessed in my life since I was declared a “goner.” You can too, but you need to be a shaker and doer. Search the internet. The guy “Block” (of H & R. Block) is a survivor and gives a free book about his story to people who ask. He has a website – get a copy of his book and read it. Get a copy of the bicycle dude’s book on his cancer battle – it’s a good read. If they can do it, any of us can do it. Memory . . . always blame “chemo-brain.” Just remembered the bicycle dude: Lance Armstrong. Somebody has probably talked about it on LCHelp. I just checked my email while I was packing up my home office so we could get a new hard wood floor next week. We’re leaving Friday for 5 days of workshops at the California Land Surveyor’s Convention. I’ll check my email again in about 7 days. I ended up putting so much time in this letter, I think I’ll change a few things (the identifiers) and post it on LCHelp, just to stir things up. I wish you good luck and great doctors in your cancer battle. I hope I said a few things that may help you. Feel free to email or call me anytime. Reily Smith

If you keep your port, be sure to keep it flushed. No one said anything about keeping it flushed when I finished chemo. I immediately moved on to another oncologist for radiation. Fortunately my primary physician wanted a CT scan that included the neck and lower head area where a clot was spotted originating from the port. As I recall, they put me under to remove the port. They cut along the same 1½” scar made when they put the port in and now the single big scar itches quite a bit. I put hand lotion on the scar everyday and the itch is not very noticeable. If I was going to have it removed again, I would ask them to cut in a little different place.

I wonder if some people having problems with the side effects of radiation may be receiving radiation from old machines or doctors that did not adequately plan the treatment. The radiation I had was IMRT that was planned to come in from several different directions to minimize damage to surrounding tissue. I received 7020 rads to the lung and 6600 rads to the adrenal gland the first time and 4500 rads the second time around to the adrenal & a node met (planned to hit both of them at the same time. I had no radiation burns nor internal pain – maybe I was just lucky. I did not know if the fatigue I was suffering from was from the cancer or the radiation, but I really didn’t care – I only wanted to get well. I think part of the battle lengthening our survival time is to research any proposed treatment as much as possible. Go into the treatment knowledgeable and ask questions about any doubts you may have. Don’t hesitate to get a second opinion. Most of us have options to go to other physicians with different skills and different hospitals with different equipment. If you’re not getting better or having serious problems, don’t wait until it is too late to look into other options. Information about types of radiation can be found at the following links. http://www.cancer.gov/cancertopics/fact ... /radiation http://www.cancer.org/docroot/ETO/conte ... tearea=ETO

Radiation was much easier for me. I think it depends on what area is being radiated. With me, radiation to the right lung every weekday for about a month and then to the adrenal tumor for a month of so – I’ve forgotten just how long the treatment was – just figured getting well was my job. Lung cancer is a tough battle – it’s necessary to do whatever it takes to get well. You say you’re in remission . . . are the SUV levels around “0” on your PET scans? You need to be a smart rat in this maze and remember that ½ of the medical people you deal with probably finished in the bottom ½ of their class.

I take astragalus. Can’t hurt – might help. Think the chemotherapy trial you are doing may really help. Check into radiation therapy if you still have hot spots after chemo. There are many supplements out there that might help – read the back posts on this forum and google search the interesting ones if you can. Best wishes.

Thank you Welthy, Randy, Littlegirl, Ursol and Dr. West. I was hoping you would see this post Dr. West. For over 2 years, my lungs have been clear per PET scans. For those 2 years, when my CEA rose, it would fall after treatment to the adrenal mass. I hope 2 years is a long enough base. After reading Welthy’s comment, I realized again that our cancers can become aggressive again anytime! I have not met with the surgeon yet. Some of the questions I intend to ask are: 1. How serious is the operation? 2. What will the surgery involve? 3. How long in the hospital? 4. Recovery time (will the tissue heal after radiation)? 5. Time to full duty? 6. Do you think there is a reasonable chance you can get all of the necrotic area with scattered cancer cells? 7. Will you be able to get any margin? 8. Would you recommend additional chemotherapy after surgery? If so, what? 9. Could we schedule the surgery after April 19 (land surveyor’s convention). 10. Will you get “pre-approval” for the operation from Medicare & Blue Cross? 11. Have you performed operations like this before? How many? 12. If you think it is too risky, would you recommend another doctor or hospital? 13. I’m a little concerned about the “level of care” at Kern General Hospital (where she is chief of surgery). Do you think I need to be concerned with this? 14. Have you operated on areas that have had heavy radiation like mine? What do you expect to find? 15. Do you think I will feel better (when healed) after getting the dead tissue out of there? That is, perhaps less fatigue. If anyone else can think of other things I should ask the doctor, I would be grateful for a “heads-up.” Naturally, any comments (been there -- done that -- medical knowledge) about my questions would sure be appreciated. Thank you and God bless you one and all. Reily

First of all, I’m sorry I have not posted in awhile – I just haven’t had anything worthwhile to contribute. Recently the CEA values & SUV’s on my pet scans have been increasing. It seems I’m one of the rare NSCLC survivors who had a tumor on the right lobe and a tumor on the left adrenal gland without spread to other areas (or perhaps the chemotherapy cleared up other small areas). For the last two years my scans have been clear except for a stubborn area on the left adrenal gland. I recently had a CT-guided biopsy on a left adrenal mass, 3 cm lesion. Diagnosis: “Metastatic moderately differentiated adenocarcinoma” (no change here). “Extensive necrosis and focal calcification present” (apparently the microwave ablation and two series of radiation therapy killed most of the cancer in the adrenal area). The biopsy comment was: “The specimen is extensively necrotic with only rare minute fragments of viable tumor tissue which forms glandular structures with cells having a moderate amount of foamy cytoplast consistent with adenocarcinoma. They also performed an immunohistochemisgtry (ICH) on the atypical cells and found: Strongly positive: TTF-1, CK7, CEA-monocional. Negative: Surfactant, CK20 and EGFR. (With negative EGFR, it confirmed that I would not benefit from Tarceva.) I’m feeling pretty good and certainly feel blessed. Some fatigue, but otherwise a little fat happy being enjoying my occasional survey work in the hills of California. I’ve heard that an operation like this is pretty serious. What do you think? Should I have the operation? Have any of you had an operation to remove an adrenal metastasis or similar procedure? Thank you, Reily Smith