icbn
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Posts posted by icbn
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Jon, this link may be helpful.
http://www.medicalnewstoday.com/medicalnews.php?newsid=47575
Combine Radiofrequency ablation and regular radiation doubled the mean survival time of patients studied.
In my mind anyway you can reduce if not eliminate the tumor, the better the chance to stop the spread of the VEGF and EGF cancer cells from starting new tumors elsewhere.[/url]
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First, my apologies to everyone. I had just received the news on the cost of Tarceva from my Oncologist. He is going to have someone at his office look at what programs might be available to help alleviate some of the financial cost.
My immediate concern was I did not have the cash on hand to buy the first month's prescription. I had my Oncologist write out two prescriptions, one for thirty and one for 5 pills. I knew I only had enough cash to afford 5 pills.
I was not trying to throw a pity party. I assumed many others here have faced the same situation. I needed your advice and everyone has come through in droves with great help. The community here is a true blessing.
Tarceva works by blocking EGFR cells that block the spread of cancer. That is great concept. But Tarceva works best on those who have never smoked. As I understand it, this may be because that the type of EGRs Tarceva targets is not present i all cancer cells.
Yet, no one can tell me if I have this EGF in me. That means not only does the medicine cost $2500 per month, it may not do any good.
They have us. We are so desperate we will spend this huge amount for a chance, a glimmer of hope. The EGF can be determined in all of us. The Tarceva usage can be refined to a smaller target demographics. Why isn't it done? Could it be because that would mean less gross sales for the companies?
I agree there must be a substantial profit incentive for companies to research and invent new medications. But, if we can refine who will be assisted by and who will not be assisted by certain meds, we need to have that routinely classified. Our EGFs types, our VEGF Scores and even DNA markers should be as standard fare as is our blood types for cancer patients. But the Oncology community prefers to just keep shoveling the same slow response with conventional therapies proven not to work.
My oncologist told me my new metastatic cancer was inoperable and terminal. He recommended conventional palliative therapy or a double blind placebo study of Experimental drugs. Experimental Drugs that had no information on if they worked at all.
I said no to both and asked for a week to study cancer. I had to orchestrate my own "curative" plan for my oncologist. Cyberknife to fry the subcarinal nodes followed by chemo to kill off anything still floating around. He recommended the best combination of Avastin, Tarceva and Gemzar.
My Oncologist is a great guy. Very open and receptive. But why didn't he recommend this treatment plan that he now agrees is very sound on July 18th? Now I feel like I have a time bomb ticking in my chest and everyday I looked at what could be done to at least make a feeble attempt to "cure" the cancer I felt as though I was playing Russian Roulette.
I know that it is too late to get ahead of the cancer in this line of treatment. We've waited too long. I asked my oncologist that "when" it breaks out again we need to be ready to remove the new tumors immediately if we can and then quickly follow up again with chemo. If we move fast we might get ahead of the metastatic spread and kill it.
Aggh. I'm just frustrated. Forgive my rant. I just love this community and all of you here. I think we deserve better than what we get from the entire medical community.
The cure for cancer may well be here in the form of expeditious and efficient medical delivery of currently available treatment regimens.
Then added to my frustration for the month long delay to "start"treatments" I found out I need $2500 to get going.
So again I'm sorry. That's the why of my post and my angst. I didn't mean to cause any problems. It is simply frustrating sometimes and I know all of us here face the same thing. That is why my heart beats in harmony with each of you .
I'm going to hit the submit button now, without proofing or reading this over. That's usually a big mistake. I usually end up groaning on how stupid I sounded.
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I didn't know cancer was a rich man's disease.
One day a Pharmacy will be held up by someone who says, "Give me all your Tarceva."
There is no way I even have the cash to buy the first month's subscription, so my Oncologist wrote me a subscription for 5 pills. That's all the extra cash I have after all the expense of the first go around with this disease. I have to come up with a solution by the end of next week or just not take it.
What have others done?
Don't worry. Something will turn up. Or as I said I'll not take it. I'm also getting Avastin and Gemzar, as well as Cyberknife surgery to remove the subcarinal lymph nodes so maybe the Tarceva won't matter.
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The reason I haven't elected a Trial is because of the lack of information on the trials as to the efficacy of the experimental drugs in earlier Phases of the Trial Process or even the in vitro experimentation, coupled with Phase III Trials being double armed experiments with half getting the experimental and half not.
Frankly, going on a trial is like buying a pig in a poke. You can't see what you are getting.
I think if more aggressive approaches were taken in expediently delivering surgical (including new, innovative surgical remedies) and concurrent chemo and Radiation Treatment in the first line defense, as well as following the same protocol in the case of metastasic spread, then there would be more survival.
The tumor needs (initial primary and later lymph node spreads ) to be removed as quickly as possible by surgery, cyberknife and other means, followed by as much adjuvant chemo and radiation as possible. This has to be the case each time the cancer pops up until we get ahead of the cancer and stop its spread, or our bodies are too worn out to take it.
This is the protocol I want my team to follow. Hopefully, they won't equivocate down the road. But one key is to act fast with any new spread. So far they haven't. All that was offered by them was "Okay its Stage IV now. Terminal. All we can do is palliative treatment. Lets look for an experimental trial."
My answer was, "Pfft. I'm fighting. You with me or not?"
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Darn
in NSCLC GROUP
Jim, I'm sorry to hear the news. You are one tough customer though. All that you have been through all while working. If anyone can beat this dragon it's you and our prayers for you.
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Surgery on the subcarinal area is supposedly inoperable, especially after the scarring from radiation treatment. However, I'm looking into some different approaches to surgery. But, If I am not a candidate for either Robotic arm Synchrony Cyberknife surgery to the subcarinal lymph nodes or for a Electron-Beam Brachytherapy then my Oncologist is going to put me on Gemzar, Avastin and Tarceva.
Has anyone had any experience with the three? Anyone with experience from all three?
HAs anyone had surgery to remove subcarinal lymph nodes? These are nodes right under where the trachea divides to the right and left lung.
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I am TOTALLY aware that cigarettes don't cause every cancer, but we do know they play a role...to deny that seems bizarre to me. I have probably made a ton of enemies out there by saying that, but it does play a role.
Don't worry, you haven't made any enemies. I don't think anyone here denies that in the least. As you say to deny the connection between cigarettes and lung cancer would be totally bizarre.
What I believe is the anger over Big Tobacco and the harm of smoking has spilled over into blaming the addicted victims who have already suffered enough by having lung cancer. The stigma is so great that LC receives the lowest per capita funding of any other cancer.
I was in Vietnam. Among the many tragedies of that war was those that hated the war let there emotions spill over and turned it into hate for those who fought the war. The stigma on veterans was so great the government through the VA did little to acknowledge things such as PTSD for at least a decade after the war ended. As an indirect result more Vietnam Veterans committed suicide than were killed in combat.
It is that same displaced anger we fear with Lung Cancer. We do not deny the connection, we simply want to say regardless of the cause it hurts like hell to die this way.
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"Theresa"]I'm deathly afraid of losing her, ever since I was a little kid I have been her shadow, we would do everything together she is like my bestfriend. We live in the same state and talk on the phone more then once a day. I get mad at the fact that if she does die she will not beable to see her grandchildren my daughters grow up. I know she is not going to live forever, becuase people don't live forever. I understand that. What I don't understand is why. I feel like I'm just rambling on and getting now where.
Theresa, you are not rambling, you are grieving. Anger is a natural part of that process. Enjoy her while you can, pray that she will make it through this terrible time and be with you for a long time.
You are sad and afraid. It is a good thing that you recognize your feelings. Just love her right now. That's what she needs and that's what you need too.
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One of the reasons Lung Cancer, while claiming more victims than all other cancers combined, gets little funding and less sympathy is because people believe we've brought it on ourselves.
So if you want to be mad, be mad at yourself. Your attitude that Lung Cancer is a self-inflicted disease is killing her and the rest of us.
If you want to advocate for your mother and help her than try to spread the word that LC must be given research funds on the par with the politically correct cancers.
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It is my opinion, so take that for what it is worth, surgery is the best solution when possible.
Get a second opinion.
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Jan I pray all will be well. Your father is lucky to have such a caring daughter.
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I'm so glad that Tosser was wrong. Here's to the good news and hopes it only gets better and better.
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You have every right to feel overwhelmed, you are. It is a scary and confusing time. It is hard to tell what has to be done first.
All you can do is to do what you can. One thing you can do is ask for help.
You will get through to the other side of this mess.
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Brandie, I am so sorry you had the need to find us, but am glad you are here. I cannot speak to the dx plan but Definitely get a second opinion.
"kamataca"]." I personally think most Drs write off anything that begins with, "I was reading on the Internet..."I find telling them that, "..I read this in a secret book I saw in an alien space craft when I was abducted last year...' is also a big turn off for doctors.
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Frank congratulations.
Let the women keep on hogging him now while he still needs to have his diapers changed. We guys can wait to hog them until they're old enough to play ball.
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Mig, surgery is only done when there is a chance the surgery will cure the cancer. If there is too much spread then only chemo and radiation would be used until either the tumor becomes operable and or there is no longer any distant lymph nodes involved..
My team saw in my Pets scans some highly questionable but early lymph nodes. Still they decided to operate. They gave me the benefit of the doubt. Unfortunately the cancer had spread and has begun spreading again.
However, I am grateful and glad they went the most aggressive route. This gives the best chance for any future reoccurrence treatment strategies as well.
The first line of attack must be the most aggressive in order to hopefully stop the cancer as early as possible.
When asking for options, ask for the most aggressive.
We will pray for your Dad. This is a process he is going through. Read the SIg lines below the members' post. This gives you an idea of what may lay ahead. Many are fighting this horrible disease and many are winning.,
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I understand your anger. It is good to be angry at cancer. Your Mom is blessed with a good plan of attack, a good doctor, prayers from all of us here and most of all a daughter that cares.
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I am truly blessed to have such compassionate community ...no, scratch that.. such a compassionate family of survivors and caretakers, who in spite of their own painful pathways have time to lift up a fellow traveler.
If shared by the world in large the empathetic and selfless behavior displayed here would end all wars and crime.
You guys truly rule.
So for all of us cute guys and sexy ladies, lets stick around just to make the world aware there's a better way to behave.
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Thinking about you Joanie.
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"cindi o'h"]Did anyone say anything about your cute little butt?
lol. Not for the last 20 pounds or so of my life.
Thanks everyone. Your support means more than I can explain.
myrnalu, I will have you in my prayers. I'm sorry you had a bummer of a report too.
From now on myrnalu maybe you and I need to just go to the VA. Remember that they, by using antiquated equipment and yesterdays technology coupled with apathetic disregard of the medical doctors, gave me a NED report. I mean the VA and maybe the whole US Government has relocated to DeNial. To think how much money I had to spend on an expensive PET Scan for bad news, when the VA's NED results were FREE!!! Duh, give me the VA any day of the week for always giving those upbeat False Negative results.
Now there's a man with his head deep in the sand.
You guys Rule. Thanks.
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I just got back from my new Oncologist. The PET Scan does show significant hypermetastatic activity in the lymph nodes in the sub-carinal area (this is where the bronchial tube branches ).
So I be officially Stage IV. Actually I think it is still Stage IIIB. If this was the degree of involvement and spread found at first it would be Stage IIIB. But since it is now 2nd line treatment it is technically Stage IV. And no I am not grasping at straws.
Okay. Maybe I am being a little like Cleopatra, the Queen of Denial.We are looking at palliative chemo. He will check out clinical trials and I will revisit him in about ten days. He gave me from 2 months to 2 years without any treatment. With treatment leaning toward the 2 years.
Its bad news, but at least the doctor admitted I was cute as hell and my wife thinks I'm hot. That's a good thing. Right?
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Thanks everybody. Every time I post and read the responses, or respond to others I read the Sig lines. I am always impressed with the courage, grace and compassion of this special group of friends at LCSC.
Katie you have created more than you know. Just a small example, I got a call early this morning from my Onc's Office. The Doc went home sick. So rescheduled to Monday. So I will have to wait to decipher the results.
I tried to Google search sub-carinal and got a lot more stuff that didn't apply to my quest for basic information.
Then I did a search of LCSC's MB and found that Joe B had the same PET results in 2004. His was attributed to radiation glow, not cancer. I looked at the sig lines of others with sub-carinal involvement and saw what might happen if it is accurate. I was also able to focus my search on the web with a better understanding and locate more info.
The Sig lines are a wealth of information of what we might possibly encounter on this otherwise unknown and dark journey. It is so helpful to see how others are in fact coping and that coping, even beating this thing is possible. It also humbles me when I see others suffer so much more than I with such grace and courage.
Thanks Katie B.
And Thanks to all who responded in this thread. You guys rule.
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Joanie, I have no idea what is usual, I only know you will be in our prayers. We all have to kick this stuff. May as well do it together.
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Went to the VA Oncologist for first time. They performed a CT scan and I was given the results last week. According to the VA, NED. Nothing, Nada, zip. Go home, don't bother us.
I already had a PET/CT scan ordered by my non-VA oncologist and I just received those PET scan results today. The old mediastintal (sp?) lymph node is okay, although still enlarged but no SUV.
But, from the report...
"There is a new area of hypermetabolic activity with a maximum SUV of 7.8 just in the subcarinal space. In retrospect, this area was subtly abnormal on the previous examination of 03/31/06. There is now increased soft tissue in this location with a markedly elevated SUV."
I don't know what that means, but there it is. I see the Onc tomorrow.
One thing for sure, the VA operates with blinders on. A CT scan is accurate 63% of the time, a PET scan is 97% accurate. IF they used better techniques the VA might find something wrong with a Veteran and then have to pay to fix it. Hear no evil, speak no evil, avoid cost?
Okay. Maybe I am being a little like Cleopatra, the Queen of Denial.
Tarceva and a media opportunity
in ADVOCACY
Posted
If I get the stuff I'll do it. Heck, I'll even wear a T-shirt that says,
"Make Mine Tarceva"