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SJAS

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  1. I recently was at the Lung Cancer Alliance site and read a letter to Congressman Shaw who is dealing with lung cancer. He has written a wonderful letter to Secretary Michael Leavitt regarding lung cancer, but I was concerned about one sentence. It calls for the NCI research funding to shift "including a transition from the current focus on late stage treatment to the responsible detection and management of early stage disease." This letter is being circulated in Congress for signatures. Here's the site:

    http://www.alcase.org/news/shaw.html

    LCA is asking everyone to write our representatives in support of their signing the letter. I wrote Congressman Shaw and all my representatives (and cc'd Laurie Fenton) asking that they sign the letter only if that part is amended. Funding cannot be shifted away from all those with late stage - that is the vast majority of those with lung cancer! It is unthinkable that those who are paying the biggest price for the decades of underfunding, now be abandoned in a shifting of research funding. Instead additional funding can be found by appropriate use of tobacco tax and settlement monies, to increase detection and management of early stage AND new treatment options for late stage.

    What do you think about this? We're talking millions of $$ here!

  2. Cindi,

    Leave it to you to deliver that kind of news in such an upbeat way. Well darn it, I raise my bottle to you and benign (unfortunately, it's my water bottle - I'm at work, but I think the good wish still counts :wink: )

  3. Kim & Mike,

    So glad you found this wonderful place of support. I am not able to come here nearly as often as I'd like, but it is a wonderful place of support and information.

    My husband is also a nonsmoker who collapsed suddenly and was diagnosed (Stage IV - mets to bone & brain) at age 50. You've already taken the right steps by getting an oncologist you trust - good for you! I remember when Steve was first diagnosed, one of the most helpful things someone told me "doctors are not God. No doctor in the world can tell you when you will die." I tell Steve that every day brings us closer to some new answers. You are in my thoughts.

  4. So happy that you found the perfect house and have lots of help to settle in. I think of your family so often and hope that the doctors will soon find some better answers for you - especially to deal with Dave's pain. I loved your story about Faith - talk about a ray of sunshine through the clouds!

  5. Carleen & Keith,

    I am so glad I checked in and caught your post. I am so sorry that you both are having such a difficult time. I'm having a hard time knowing what to even say to people anymore other than I care and I understand. We are dealing with some bad news right now also and my faith is getting shaky as I deal with my husband's new issues, and friends at home and here at LCSC all having such a rough time with cancer.

    I am really glad you came back and understand about feeling guilty because of not being able to keep up with everyone here. I am in the exact same spot - but I know we have to focus on the things that are right for our family. It doesn't mean we don't care, it's just that it's all we can handle right now.

    During the rough times, I think about my friend from church giving me a hug and whispering in my ear, "we do believe in miracles, we do believe in miracles"... and I keep trying. You keep trying too!

  6. I am so heartbroken that you are now having to deal with this - but you both always are an inspiration and that hasn't changed one bit. I remember when things were so bad for Steve last July; his reports sounded just like that. His doctor said "more tumor than liver," but things did turn around and that is exactly what I pray will happen for you. Keep your eyes on the crest of the hill that is just ahead and soon you will be cruising down the other side. I bet taking time from work to focus on his health will probably be a big boost. You will be constantly in my thoughts and I will be trying to sign in much more often to see your updates.

  7. Just wanted to tell you that on our way home from Steve's dr. appt. today I dropped off a packet of information at ACS which included some of the stories here, a 2000 CDC study on Cigarette Attributable Morbidity (which shows LC at the bottom with 1%),and some other articles regarding the stigma and disgraceful underfunding. I had quite a discussion with the director yesterday and she reconfirmed my view that ACS is like a huge, amorphous being that sucks up attention and resources, while at the same time no one seems to be able to get through to whoever is in command. Indeed, several ACS staffers have told me that they have no voice at all in the direction of ACS and feel powerless.

    Although it is tempting to simply write them off and redirect our resources elsewhere (mine certainly will not be going to ACS this year!), I know we must be willing to challenge this "sacred cow" of cancer foundations. ACS wields far too much power and influence for us to allow them to continue as they are. The other ACS staffer I talked with sits on an advisory board for NCI (where federal research funding decisions are made) and is viewed as a representative of the lung cancer community. This is the same person who said that focusing on smoking gives the ACS "more bang for its $$$" and that research $$$ aren't directed specifically toward LC because there really aren't any promising prospects. It was patently obvious that they have already written off all those already affected with LC. Please join me in contacting the ACS and expressing your outrage.

  8. Peggy,

    I have been so out of touch. I am sooo sorry that things are going so rough right now. Thank goodness it was a cyst. So sad to hear of your son's illness too. Taking the leave is a wonderful decision -although I am well aware how hard it is for these very active men to take it a bit easy. It is such a different life once they leave the working world. Even though Steve was never one to "hang out with the guys" he has met with his old boss for a walk and coffee and it really helped. That way he wasn't so completely cut off from the world he knew and they could talk business instead of cancer.

    My prayers for you all.

  9. Still working out of town, but I'll help Steve fill it out when I get home. (He can no longer see well enough to be able to fill it out without someone reading it to him.)

    Addie - I do understand your feelings and I totally agree that we must fight for ALL lung cancer patients - just as we must fight for all cancer funding to be increased. It is unbelieveable to me that cancer surpassed heart disease as the #1 killer for those under age 85 and the story could only be found buried deeply in the middle of the newspapers. However, I do know that it is not until the general public understands that LC is not limited to smokers that the situation will change. Right or wrong - that's the way it is out there. I see strong parallels between what happened with HIV/AIDS after Ryan White's case was publicized. The acceptance of Gay persons with HIV/AIDS, while still having a long way to go, was improved by the change in attitude to the disease.

  10. A further thought...How about if we all make copies of this thread and walk into our local ACS office and give it to the director? Or send it to the national office of ACS? How about our local newspapers? Wonder if ACS would respond if they were getting a lot of "heat" during this high profile time.

  11. Oh my gosh, I'm still cracking up about that one Becky.

    Sorry to show up so seldom these days. Work, medical issues,teenagers...etc. I just popped in quick but wanted to share my ACS experience.

    We're still trying to set up a group in no. Calif to make sure that at least something is planned for LCAM. ACS has been pretty much unresponsive. They did give me the name of an ACS staffer who lost his nonsmoking wife 2 years ago. I was thrilled thinking we had an "insider" to help. Wrong. He told me that ACS needs to put its $$ where they get the "most bang for their buck" and that is to focus on smoking. He also said that there isn't as much funding for LC research because "there just aren't many promising options." (Heard of "chicken or the egg first...?)

    One more thing on Relay for Life. My son volunteered to be the team leader for his school. In the literature he brought home it said that ACS funded research which "established smoking as cause of lung cancer." Not "a cause" or "one cause" just "cause" period. I tried to protest to the national ACS - to no avail.

  12. Pat,

    Afraid I don't have much advice for you because Brian's treatment is very different from Steve's. I just wanted you to know I am thinking of you and hoping that Brian will be feeling better after getting through the chemo.

  13. Thanks for sharing this uplifting information :)

    Also, Fay, thanks for the info about the grapefruit. We had never heard that. Even though it isn't a regular part of our diet, it's good to know.

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