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Susanrae

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    Susanrae reacted to Susan Cornett for a blog entry, 4 years!   
    Today marks 4 years of survival! By most standards, my path hasn't been as difficult as others. There have definitely been highs - when my hair grew back, my lashes grew in longer  - and lows - two recurrences and a secondary cancer diagnosis. But as I say often - I'M STILL HERE! I tell my story to anyone who will listen. People need to know that lung cancer doesn't have to be an automatic death sentence. Does it suck? Yes. Will it change your life? Definitely. But you move forward, one step at a time. Forward is forward ,no matter the speed.
    I am looking forward to the Breathe Deep Denton event in April. I enjoy visiting with the other survivors and bringing attention to this cause. I've also been asked to speak at a function in March so I'll be sharing my story again. The more the public understands lung cancer and all of its causes, the better our funding will be for research. 
    Most importantly, though, is this: I stumbled across this site one night when I was looking for answers. I have met wonderful friends - in person and online - here. Those friends have made this journey easier. Thank you, all. 
  2. Thanks
    Susanrae reacted to Tom Galli for a blog entry, Free and Invaluable   
    Using the words free and invaluable to characterize lung cancer medical care is a hard sell. I’ve seen so many scams promising this, that, and the other thing that deliver nothing more than a money pit.  So I was indeed skeptical when Dr. David S. Schrump introduced his National Cancer Institute Intramural cancer treatment program, at our April 2018 LUNGevity Summit, with the words “no cost to patients, including travel and lodging.”
    Why didn’t I know about this resource?  I’ve encountered so many newly diagnosed folks who had no or inadequate insurance and who had to forgo treatment because of financial concerns. Yet, there is a sophisticated, taxpayer funded, medical system that designs “unique to patient” protocols including surgery, radiation, chemotherapy, and newly emerging treatments. And, it is free! All patients at the NIH are on investigational protocols, including those who are receiving standard care, so that their tumor tissues, blood, etc can be used to develop new cancer therapies. Once a patient is enrolled onto a protocol, care is provided at no cost. There is no third party billing, deductables, etc.
    Then on the second summit day, I learned Dr. Schrump’s Surgical Oncology Team is developing unique vaccine-like immunotherapies using tumor material surgically removed from a patient — a tailored and individualized immunotherapy agent. In an ongoing vaccine study, Dr. Schrump’s team observed immune responses to lung cancer-associated proteins in 60% of patients; several responders have had unusually prolonged disease free-survivals, supporting further evaluation of the vaccine. Dr. Schrump hopes that personalized vaccines may one day be an alternative to adjuvant or post-surgical chemotherapy, the current standard of care. Much more work needs to be done to determine to feasibility and potential efficacy of this approach.
    Moreover, they are using aerosol delivery methods as alternatives to IV or oral administered drugs to increase the uptake of drugs into lung cancer cells, and “prime” them for attack by the immune system. Indeed, his presentation was filled with very innovative methods of attacking lung cancer with promising results.
    If you are an American and don’t have the financial resources for lung cancer treatment or if your medical team has run out of treatment ideas, contact the National Cancer Institute.  You don’t need a physician referral. Email [email protected], introduce yourself and your diagnosis stage and type and put your phone number in the email.  Free and invaluable may indeed be words appropriate to use in concert with lung cancer treatment.
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    Susanrae reacted to LCSC Blog for a blog entry, Still Processing   
    Off we go - or not, into the wild blue yonder. It seems that my most recent CT scan's results, described as "a little worse" by my oncologist, are indeed cause for some reflection and change. (I'm not quite able to say "cause for concern" yet.) As such, to make the most effective change, per my oncologist's orders, I am scheduled for a needle biopsy on the Wednesday this column publishes. This procedure will determine, if there is a match, to the specific type of cancer tumor that I have. (Without boring you with too many details, the short version is that all cancer tumors are not alike. Biomarkers/genetic mutations such as ALK, BRAF, EGFR, NTRK, PD-L! and ROS1 are the most common, and certain medicines work better against certain tumor types. Variations in the tumor types, such as the ones I've described, is a relatively recent discovery in lung cancer research.)
    What this research has led to is another new kind of cancer treatment known as "targeted therapy." This means rather than "flying blind"--to use one of my brother, Richard's, favorite expressions--and employing a one-size-fits-all kind of approach to treatment, oncologists now have specific medicines to infuse when the tumor's genetic mutation is confirmed. Wednesday, hopefully, will confirm something. However, researchers have not discovered all the tumor types so it's possible that this biopsy will reveal nothing useful for me and in effect, I'll be back to square one-ish.
    As for what 'square-one-ish' means? It means that I'll likely be infusing medicines that previously worked for a time but whose infusions were stopped after they all ran their successful course years ago. As I've been told whenever this change became necessary, cancer cells eventually figure out what's happening to them and then the tumors begin growing. Once this growth is indicated on the CT scan, a new medicine is usually started, and on and on it goes until, apparently now, for me anyhow. "Targeted therapy" offers lots of new medicines. I just need a match. Unfortunately, there's no guarantee the biopsy will provide just such a match. There's only one way to find out. On Wednesday, we will begin to find out. To say I have a lot riding on this determination is the understatement of the year; at least for Team Lourie, it is. If I'm forced to repeat infusions from medicines that stopped working years ago, it'll be "Katie, bar the door," as we say in Boston which means, "Look out!"
    I'm trying not to 'look out' though. I'm trying not to look anywhere, except straight ahead. Just because my life may be at stake, is no time to deviate from the norm that has been my modus operandi over the past 11 years. I'm not quite ready to consider that my stage IV lung cancer survival is coming to an end. Maybe it's just staggering and within a week or so, I'll get my bearings again. New medical information getting me new medical treatment is sure to put a bounce back in my step. For the first time in 11 years, to quote George Costanza from Seinfeld: "I'm back, baby." This could be the jolt my body needs to get me through to the next research level. The Team Lourie strategy has always been for me to try and live long enough to reach the next medical breakthrough. So far, I've benefited from a few: tarceva, avastin and alimta; all miracle drugs according to my oncologist, and here I am, living proof that it has all worked.
    Until I hear, post procedure, from my oncologist, in the interim, I am re-experiencing many what-happens-if-and-when emotions that I've not wrestled with for years. Unfortunately, this hospital visit is taking me back to the visit/biopsy I had in Feb. 2009 which confirmed the malignancy in my lungs in the first place. And here I am, hopefully not in the last place, waiting for the results of a biopsy yet again. It didn't work out so good in 2009. I just hope I have better luck in 2019.
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