Surveyor answers questions from a "newby"

[Surveyor]

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

[ernrol]

Reily,

I read your entire post. I think it is great for one to say what they think. I agree with some of what you say and disagree with some, but that is to be expected. The one item I would add to what survivors are is: They Have Faith.

Lance Armstrong never mentions God in his book. Lance had great faith in his doctors and faith in him self. This I think helped him beat the cancer. You must have faith to beat this. I have faith in all the same things that Lance had. I also have faith in my God, which I think gives me just a little more edge.

I will e-mail you for your list of supplements. Keep posting.

Stay positive,

Ernie