Two years and counting

SaltyDog
0 Recommendations

Had a Stable PET/CAT and got the report on the second anniversary since Diagnosis. Alimta has been working for me for the past 35 weeks with very few side effects. I have some shortness of breath and some neuropathy but I feel great and am loving life. Better yet, I am hoping to be able the help LCA fight this beast in the public forum. We survivors have to be noisy beyond our numbers to redress the public indifference to this disease. I think that it is Sun Tzu who said : When short of troops, add drummers and flag wavers.

I am off to the gym to celebrate and to Church to give thanks.

Phil C.

19 replies

MaryAnn

Thank You Phil for sharing such great news. It is time to do a Happy Dance. May GOD Bless you with many more clean scans.

Mary Ann

ckm9

Hi Phil

Great news about your scan results. My thoughts and prayers are with you.

I am trying to find people like you, LCA, to help me with this subject: Lung Cancer - Media and public awareness.

Yesterday I sent an email to the Today Show after watching them talk about cancer. Please see below a copy of what I sent to them. Maybe they will be willing to help us raise the flag of awareness. If not maybe we can start something ourselves.

Take care and hoping to hear from you on this matter.
Warm regards,
Claudia


From: ckm9@comcast.net
To: today@nbc.com
Subject: Lung Cancer - Media and public awareness
Date: Wed, 28 Mar 2007 13:07:29

Good Morning,

I saw part of the Today Show this morning and the topic was Cancer. The talk was mainly about Breast cancer, new preventative screening with MRI's, some talk about Prostate cancer and very little about Lung cancer. What surprised me the most is that when briefly talking about Lung cancer the MD, I believe Dr. Nancy Snydermann, related lung cancer mainly to smokers. Unfortunately, that is not the case anymore and the media, the public need to become more aware of what is happening with Lung cancer.

I would like to start, somehow, a type of Lung Cancer Awareness Movement, so there can be more education about this disease. The public, the media are simply unaware of how devastating this disease is and the government is not helping much with money for Lung Cancer Research, as a matter of fact, some funding has been cut and the NCI has decreased funding for cancer research in 30%.

I would like to ask the Today Show and / or NBC, as a network, if you can help me and countless of other lung cancer patients with this issue.

We could reach millions of people, we could help increase funding for research by doing different events and at the same time we could help increase pressure on the government so funding for research is not cut, we could help with preventative screening for lung cancer, etc. So much could be done with a strong network behind and most important, we could help "save lives".

I was recently diagnosed with Lung cancer, on December 07, 2006 (one never forgets "D" day). I was a very healthy woman, non smoker, a young 53 year old, no symptoms, exercised everyday, ate very healthy, worked full time, etc. and yet, this dreadful disease appeared in my life. I just finished 3 rounds of very aggressive chemotherapy to help shrink the tumor. Today, I will know if the chemo work, if the tumor shrunk, and if the disease has not metastasized. I am a fighter and I want to be able to help others but cannot do it alone.

Here are some facts: Statistics

Lung cancer will kill more people this year than:
breast cancer
prostate cancer
colon cancer
liver cancer
kidney cancer
melanoma... "Combined"

Never smoked: 15-20% of new lung cancer cases, mostly women. Remember Dana Reeves, a sad and unfortunate example of this new statistic.

Thank you for taking time to read my request, hoping that you can help us and together we can initiate something very important.

Warm regards,

Barbara-Ellen

Claudia,

Loved your letter to the Today Show. You are an activist. God bless you.

You have me to help in any way I am able.

BarbaraE

Barbara-Ellen

Hi Phil,

So glad that Alimta has done so much for you. Bill and I believe it did a whole lot for his well being, and never regretted being on it.

Here's to more noise and many flags waving, and while at Church, keep us all in mind. Prayer is quite powerful.

Many blessings to you, Phil,

Barbara

SaltyDog

Claudia

You are right on target and I applaud you for getting this out. My advice is to keep it up, to keep on the pressure. It is unjust; you are right to be angry. The numbers and facts you cite are so compelling that they will eventually get through.

LCA has come out with a hard hitting press release that I have pasted below:
Phil C.

LCA Issues Statement on MRI Study on Screening for Breast Cancer


WASHINGTON, March 29 /PRNewswire-USNewswire/ -- Lung Cancer Alliance
supports the new call for high tech MRIs, in addition to mammograms, for
women at high risk for breast cancer which will enable more tumors to be
caught at their earliest, most treatable stages. This gives added hope to
those women at high risk, especially those with a family history of breast
cancer.

But it begs the question -- why does screening women at high risk for
lung cancer meet with such virulent opposition from the same public health
establishment when advanced CT technology and a well defined approach to
follow-up testing is available to them -- today? While 40,000 women will
die from breast cancer this year, over 70,000 women will die from lung
cancer -- more than of all deaths from breast, cervical, ovarian and
uterine cancers -- combined.

Six months ago, the New England Journal of Medicine published the
results of a study carried out over the past 13 years on 31,567 people
which clearly showed that CT screening can detect lung cancer at its
earliest stage in 85% of those scanned and lead to a 10-year survival rate
of over 85%, versus a current five-year survival rate of only 15% among the
unscreened population. The protocol has been so carefully developed that
only 1.7% of those scanned required biopsies and 90% of those biopsies
confirmed the diagnosis of malignant cancer. Notwithstanding the profound
significance of these statistics, this extensive study was met with intense
criticism from some sectors for not being a "randomized controlled trial"
and for too many false- positives.

The MRI contra lateral breast cancer study, published in the same
journal yesterday, was not a "randomized controlled trial" either. In
contrast, it covered only 969 women over one year, resulted in twice as
many false- positives as mammograms and CT scans, and led to 120 biopsies
which showed that 75% of the suspected cancers were not malignant. In
addition, MRIs cost five to ten times as much as mammograms or CT scans.
Yet, this has not stopped the public health establishment from embracing
MRIs as the new standard of care for women at high risk for breast cancer.
Why are women at high risk for lung cancer being denied the same compassion
and support?

LCA maintains its position that anyone at high risk for lung cancer
because of a smoking history, a close family member with lung cancer,
exposure in the workplace or during active military duty to asbestos, Agent
Orange, beryllium and other carcinogens should speak with their doctor
about getting a CT scan. The scans should only be done at sites with
extensive experience in diagnosing lung cancer.

The Lung Cancer Alliance (http://www.LungCancerAlliance.org) is the
only national non-profit organization solely dedicated to patient support
and advocacy for people living with, or at risk for, lung cancer. As the
number one cancer killer, lung cancer will kill more than 160,000 Americans
this year alone, causing more deaths than breast, prostate, colon, liver,
kidney cancers and melanoma combined.

LouellaRobarge

Count me in,Claudia. Glad you used the opportunity with your speedy inquiry to the media. I will help in anyway I can. I have a background in journalism and some experience with lobbying and the political network. We need to yell and scream about the collusion and corruption between the FDA and the pharmaceuticals which is holding up and halting promising drugs. I wonder if the Post( the Washington)has ever done and investigative piece on the FDA and their fraudulanet culture. Ditto the pharmaceuticals. Let me know what you want me to do ok? Perhaps we can make an appointment to see the new FDA director. I know that sounds like a bold step but we need to be strong and clear in our message. It is time that the victims,their caretakers and families be heard. Maybe we need an appointment at the Post? Did you see the latest numbers the media released yesterday? It used to be 3 persons out of 100 would get cancer and now it is 1 out of 3. It really is a travesty.. Lynne Carmody

jmlavey

hi Phil,

Glad to hear your're feeling good, working out , and living life with gusto. It's important to continue to have goals.
Best wishes,
Joyce

ckm9

Hi Barbara,

Thanks for your support. I'll call on you and everyone that would like to help with this important matter. We do need to stay united and get this going.
Please read Phil's (SaltyDog) reply to me on the subject. He pasted a statement that LCA put out on the matter regarding the MRI Study on screening for breast cancer. Very interisting.
Warm regards and have a great weekend
Claudia

ckm9

Hi Lynne,

Thanks so much for your reply. I would love to get together with you regarding this matter and the issue regarding the FDA and the pharmaceutical co. I replied awhile back to someone on this site regarding the outrageous costs of drugs/treatments here in the US. I'll try to find it later and send it to you. Regarding the media/public awareness, please read Phil's (SaltyDog) reply to me on the subject. He pasted a statement that LCA put out on the matter regarding the MRI Study on screening for breast cancer. Very interisting.
We do need to stay united and get this going.

Warm regards and have a super weekend
Claudia

PS.: I am going away for the weekend and will not have acess to a computer until Monday evening, so, if you don't hear from that is why.

ckm9

Hi Phil,

Thank you for your support and sending me a copy of the LCA statement. I guess we are all on the same track and wanting to do something about this indeference from the media and public.

I received replies from BarbaraEllen and LouellaRobarge. Please take a look at the replies and see if you are interested at all.
I will not have access to a computer this weekend so I'll check back next Monday.
Have a wonderful weekend.
Claudia

saleach

Count me in on raising our collective voice and fightlng for more research funding for Lung Cancer research. I must admit I never considered my self a candidate for this deaded disease as I was raised a non-smoker and never smoked in my life. I was never exposed knowingly to radon or worked in the " mines".

My D-day was last May 2006 and the battle continues with my second round of a clinical trial chemo combination after Tarceva failed to tame the beast. In my considerable reading since my treatments began, I have become more and more convinced that there may be better ways that chemo. Diet and/or natural supplements appear to be alternatives that may assist in fighting this but it seems that under the current system in the US these treatments are not being studied enough to find out what works and at what doses. Being natural non-patentable drugs our "normal" research establishment won't pursue these. I feel that funding grants should be raised and issued to selected Universities around the country to study these alternatives aggressively so that we can reduce the spread of this disease and assist those of us who are currently battling this not only to survive by thrive.

God Bless you and our effort to bring this more into the mainstream of awareness.

PS- IDEA -- SEND A MODIFIED VERSION OF YOUR TODAY SHOW LETTER TO ALL CURRENT PRESIDENTIAL CANDIDATES AND ANY OR ALL CONGRESSMAN & WOMAN, TONY SNOW ( @ THE BUSH WHITE HOUSE) AND BEGIN TO CREATE A GRASS ROOTS LOBBY FOR OUR MOVEMENT. iF A STANDARD SIMPLE LETTER CAN BE DEVELOPED AND SENT FROM A LARGE NUMBER OF US REGISTERED VOTERS MAYBE THEY WOULD BEGIN TO GET THE MESSAGE . OUR ELECTED LEADERS NEED TO QUIT BICKERING AND STEP UP AND SHOW SOME LEADERSHIP AND LUNG CANCER IS A GOOD PRACTICAL PLACE TO START.

ckm9

Hi saleach,

Don't know your name so I am using your user name.

Thanks for your support and reply. I was my way out and decided to check my emails one more time and found your reply. Did not want you to think I did not reply for some reason. I'll get back to you next week because I'll not have access to a computer this weekend. By the way, I agree with you.

Have a wonderful weekend in sunny California

Warm regards
Claudia

saleach

Look forward to helping spread the word. I wrote to the John Edwards campaign telling him he has an excellent platform to get "specific" behind a cause that is personally effecting his spouse and family and all I got back was a generic thank you letter and a request for a campaign donation.

All they want to talk about in universal health care run by big drug companies, healthcare providers, and goverment along with more red tape. I'm not a big believer in socialized medicine, however, what they could offer a federally funded "major medical" pool of money to cover the research, treatments, and take these costs responsibilities away from small to medium business health plans. This could encourage more small to medium and even large businesses to offer medical plans that could focus on patient well-being and early detection of problem conditions making plan costs easier to define and contain.

I'm convinced that with earlier detection my cancer would be under control by now and/or being close to eliminated. I read about breath test research (makes sense) that have proven in various clinical studies that can detect lung cancer in the early stages by sensing chemicals in our breath. We already use this approach to check our car emmisions, why isn't this research getting more publicity and support. If found early most cancers are treatable at much less cost and a higher survival rate which would reduce medical costs and be good for everyone.

I realize that the above might be far to logical and simple approach for our current elected officials. We need to strengthen our voice.

SaltyDog

Barbara,

Thanks for the good words and kind thoughts. I am familiar with Bill's struggle and believe that he set the high water mark for Alimta treatments. Pls tell him that he is one of my heros.

Incidentially , all of us owe you a giant "thank you " for the for your blog, which is a fundamental fabric of the fight against this disease. You are part of my life, every day, and as vital as the mail man and the Washington Post. I salute you for the essential service that you provide. I hope that everybody who reads this, subscribes to your blog. You arm us all for this battle of wits.

Phil C.

Barbara-Ellen

Phil,

You are very welcome. It does my heart good to see another Alimta survivor.

It's also heartening to know that the blog helps. I know, Phil, that it helps me a great deal just by doing it.

Each day, I look and hope that something there will be either "fast tracked," or getting into the pipeline through a Phase III.

Thank you for your confidence. It made my day.

Many blessings to you, Phil.

Barbara

SaltyDog

Claudia,Lynne and Saleach

Let me salute you all for your moral outrage. I have some thoughts as to how to make it effective as an instrument for change. I live inside the Washington Beltway and, believe me, there is great power in grass roots movements. But to be truly effective that has to be some glue and organizational strength to make those voices effective. That organization for us is the LCA .
http://www.lungcanceralliance.org.
First:: Go to the LCA Website and see the things that are doing and trying to do. We have six (or seven) professionals working for us there, in the midst of the fray in Washington, and they are having measurable success. They are working directly with Congress to shape legislation that puts real emphasis on Lung Cancer detection and cure. Secondly, they have put together a publicity campaign that is dynamite. They have Try Aiken and Carl Ripken Jr., two first magnitude sports legends, who have taped all forms of Media to get the word out. They have Dana Reeves sister, Dr Deborah Morosini, call on key legislators and cut spots for 500+ radio station. They have also cobbled a network of State chapters to badger the state legislators for research funding out of the tobacco settlements. There is lots more: look at the site: http://www.lungcanceralliance.org. It is amazing what they get done with that small a group.

Second. Get engaged with your state chapter> California, Mass. and Georgia have very good ones. There are several others that quite effective and some that are in various states of self discovery. They will provide the muscle to work on the state reps and your reps here in Washington. If there is no state chapter where you live, then start one.


Three. Sign up on the LCA mailing list and sign the petition they have on their website. They also have Sample letters to send your Congressional rep . Send them. Rather than railing against the injustice, get you voice out there where it will be noticed . Also get your kith and kin signed up as well. It is numbers and passion that counts. For those of you who write as well as Claudia, they have a index of media outlets for your submissions.

Four: Help LCA financially. Donate or agitate for more funds in their direction. That is the only way they can expand there footprint in Washington and our message nationwide.

In the interest of full disclosure, I joined their Board of Directors (volunteer) in DEC to put my body behind their effort.

Phil C

saleach

Thank you for the site link. below.
http://www.lungcanceralliance.org

I went and signed up and have forwarded copies of the petition to get the word out. It was refreshing to finally see a bipartisan Senate bill proposed in March 2007 that may finially address Lung Cancer on a priority level in Washington DC.

My biggest wish is to make the public and our politicians aware that this is not just a "smokers" disease. It can happen to anyone. We simply must improve our early detection techniques and also do more work indentifying causes and risk factors. If we can test our cars emissions and determine what might be wrong with our car engines, we ought to be able to sample our breath (exhaust) for signs on lung cancer.

Toddy

Congratulations, I wish you many many more happy results.

Toddy

SaltyDog

Saleach

Congatulations Those are great steps. Don't forget the others.
I agree that LCA is making headway on the hill. Lung cancer is being discussed not swept under the rug.

I agree with you bringing on Non Smokers and we have some recent data to support our case. It turns out that 20% of new detections in women are in "never smokers". Given enough coverage, this data can be one of our weapons to prevent policy makers from giving the back of their hand to Lung cancer by automatically laying it off to personal behavior and personal choices. I am a never smoker, but my outrage extends to everyone at risk of this disease. We cannot let the "blame game" diminish progress toward solutions to this disease.
Look at tthe Links from the LCA site about Deborah Morosini (Dana Reed's Sister). You
will see that the LCA is on top of this.

Re: Early detection techniques. Barabara Allens blog had several articles about detection of Lung Cancer using simple breathanalyzers. (My friends at NIH warn me that all the new screening methods are five to fifteen years from fruition.) In the meantime, what we have is Low dose CT.

http://www.medicalnewstoday.com/healthnews.php?newsid=63857

Last point: I recommend that you suscribe to Barbara Allen Blog. It reports from the leadng edge of new discoveries and therapies. It also tracks the major news relating to Lung cancer from the professional and public media. It is the only way to stay abreast of this topic without devoting your entire day to it. great stuff. \

Phil C

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