Women Against Lung Cancer Annual Meeting (WALC)

[DaveGr]

I attended the Women Against Lung Cancer annual

meeting Friday, June 4, 2004. The meeting was held

in New Orleans, preceding the ASCO meeting. I was

invited to attend by Joan Schiller, president and

founder of WALC, and also my oncologist. WALC

awarded me a Grant to attend.

For me to be in the same room with many of the major

lung cancer oncologists and researchers was a very

humbling experience. Also, I was the only male

patient advocate to attend. There were several other

women patient advocates in attendance as well.

I also enjoyed meeting some of the people I have been

corresponding with for the last couple of years, but

had not met personally until this conference.

The emphasis of the meeting was on advocacy. An

issue that I brought up is the urgency which many of

us have with our disease. Because of the high death

rate many of us want things done now, which has not

been possible. My read on the stigma is that it is

pretty much behind us. It is recognised that smoking

is still the major health risk in the US and is

linked to many diseases besides lung cancer. Now

that it is being recognized as such, the question

remains as to why the number of women with lung

cancer is rising as each year goes and it has now

reached epidemic proportions. As was emphasized, at

the meeting, the death rate of women with lung cancer

will, most likely, double that of breast cancer this

year. The problem is that the public and general

medical community are failing to recognize this

fact.

The highlight of the meeting was a teleconference

with Sarah Brady, wife of Jim Brady, and the backbone

behind the Brady Gun Bill. Sarah is a 4 year

survivor of lung cancer. She wants to make a

statement on behalf of lung cancer and is willing to

use her reputation and recognition for the purpose of

finally putting a face with lung cancer. She

discussed several persuits that she will be using on

this behalf. For me it was exciting to hear this and

to have someone of her character and recognition to

publically state that she has lung cancer. There is

sure to be much more coming on this.

There were 3 "breakout groups". The group I met with

discussed mediums to be used to persue public

recognition. One thing that stood out was the

suggest of obtaining the services, pro-bono, of a

public affairs company. I, personally, believe this

may be the way to go. It appears that WALC will

become proactive in this role. There was media and

pharmaceutical company representation present at the

meeting and there were very positive comments from

them in this direction.

I want to thank WALC, especially Joan Schiller for

her encouragement, for inviting me and allowing me

to attend this meeting. I look forward to becoming

more involved with this organization.

[Andrea]

Dave,

I am going to check out WALC. Thanks for the info! And I just want to say, THANK YOU for bringing up an issue that was sitting in my head for awhile---URGENCY. Yes, I want to advocate for early detection and all of that good stuff to prevent anyone else giong through it.

BUT I admit this, I think I more so want to advocate for stuff to be done immediately so that my mom and all my friends on here can get the best treatment. The way I see it now, and I am not sure if this is crazy or extremely self centered, but I feel like the longer we can keep people alive, the better the chances there are for new developments and I want those new developments available NOW.

[Addie]

Wow, Dave...this sounds fascinating....and what an honor to be invited to participate! I didn't even realize WALC existed but plan to check into it. And it was interesting too, to hear you say the stigma is disappearing. Apparently that news hasn't quite caught up to New England yet....but perhaps soon.

When I think of how women mobilized to gain more attention AND more research monies for breast cancer.....well, there is no reason it can't be done again for lung cancer.....which of course will benefit ALL who have it....male and female. (And to set the record straight, I realize that many men also advocate/advocated for breast cancer research as well. My comments here are NOT for the purpose of implying that it was ONLY women who made a difference about breast cancer research and fund-raising!)

I agree too, that Sarah Brady being open about her experiences may well be an asset to the cause and get the word out there in more significant ways that l.c. deserves and needs more attention, more money for research, less stigma and blame.

Thanks for sharing your experience with us...I'll bet it really was a fascinating meeting.

P.S. Coming back to add a thought I forgot earlier. I cannot help but wonder if female hormones plays some major role in why more women are turning up with lung cancer? I know hormones are suspected in so many other ailments or conditions that often are more common in females....that one has to question the relationship between hormones and lung cancer as well. At least I question it!

[Elaine]

DaveGR

Thanks for representing me and all others at the meeting.

One question: Did you have to borrow David C's dress and ahhhh I guess you would call it, his padding????

So if you did have to go in drag, I think a picture would be something many of us would like to see, and we might even pay to see it!!!

elaine

[chloesmom]

Dave Grant--

Thank you for representing us at the conference! How cool are you to do do that? I have heard wonderful things about Dr. Schiller for a long time now, and if I lived where you do, there is nobody else I'd settle for--she would be my main cancer care provider.

I wish you continued good health and a nice backswing!

[DaveGr]

Everyone, thank you for your comments.

Just to elaborate on some of the issues brought up, these were things that were discussed at the meeting. The hormonal possibilities are in the forefront of all the researchers. A vast majority of the women being diagnosed with LC are in the non-smoking and never smoked class, which, of course, has raised many questions. The outlook, over the next few years, however, is not good. It is expected that the number of women dying from lung cancer, in 2005, will more than double the number of deaths due to breast cancer. Lung cancer is now THE NUMBER ONE DISEASE effecting women. Lung cancer is now at epidemic proportions in women.

When one considers all this information, it is no wonder we want urgency with research and money for research. Many of the women, which were mostly oncologists and oncology nurses, came up to me and congratulated me on my survivorship. I reminded them, however, the sense of urgency among all of us, who are survivors, is very real. We want to see research become reality in our lifetime, whatever that may be with us. I have to say this, all the women who were present, to include the few women survivors who were there, are very dedicated to the cause of lung cancer. It was very inspirational to hear this dedication, as, sometimes, many of us think our doctors treat us as if we are just another patient. With these women, and even beyond these women, many in the field of treating lung cancer, are very serious about bringing this disease under control. The only thing holding them back is money.

Again, thank you for your comments. We are not alone in our quest.

[Hebbie]

I just wanted to chime in w/ my two cents that this is such a wonderful organization! I contacted them to see if they would be willing to send me some of their informational flyers/pamphlets regarding their organization to use at my walk.......

Not only did they respond back IMMEDIATELY, but said they would like to send one of their respresentatives to attend the walk and personally man the informational table.....AND would like to post my walk info on their website.

They are so dedicated to getting the word out there that this disease is an epidemic among women, and are currently attempting to initiate a WALC research grant geared towards understanding sex differences in the disease (for example, why do so many more women non-smokers get this???).

What a dedicated bunch of women!

(Dave you are very fortunate to have Dr. Schiller on your side!!!)

[nadri]

I think that all of this advocacy sounds very encouraging indeed and certainly women with lung cancer deserve the same funds, commitment and energy as those with breast cancer. It is not just non-smoking women who get lung cancer never smoking men also can, and they too deserve the same commitment I hope this is a step forward for all lung cancer sufferers.

[Elaine]

I hope you meant to imply that smoking men and women also deserve funds and better treatment.

[nadri]

Of course I didn't mean that smokers don't deserve the funds, but with all of the emphasis on non smoking and never smoking women, I thought I would point out that non smoking and never smoking men with lung cancer do exist as well. In fact I think that all lung cancer survivors and supporters should work together without any division.

[Hebbie]

If I can interject a little, I don't think that WALC is trying to discrimate, or insinuate that non-smoking women with LC deserve bettet treatment, I think they are just trying to draw attention to the fact that Lung Cancer is the NUMBER ONE cancer killer among women. It's actually the number one KILLER of women -- more so than heart disease. It is also on the rise among non-smoking women (more so than men) and they are trying to figure out why. It has reached epidemic proportions!

All women are terrified of breast cancer and go for their mammograms religiously because they know the risk, yet don't take any proactive approach regarding lung cancer, because most of them don't realize they are even at risk!

[Guest bean_si (Not Active)]

I think WALC is trying to eradicate the stigma associated with lung cancer which interferes with how much research is dedicated to this disease.

By lettting others know that even though they do NOT smoke they can still get lung cancer causes people to think twice and realize what an immense problem this disease has become. And more personal to them - they are not immune.

Hopefully, this will cause them to take action, donate funds, contact their senators, congress, etc. to get more research and to help bring our plight to the attention of the public. The medical community and public must stop treating us as invisible or we will get nowhere.

It's my believe that lung cancer can be beaten into a pulp if more attention, more research is dedicated to it.

I haven't attended a meeting of WALC yet but do get info from them.

Good for you DaveGr. I'm proud to have you as an advocate.

Cat

P.S. I can't type & my grammar is atrocious these days.

[DaveGr]

WALC has a petition posted at their web site http://www.4walc.org There is a link to the petition on the Home Page. Dr. Schiller needs thousands of names on that petition before it will really get the attention of Congress. So not only should everyone here sign the petition, your family members and friends should sign it as well. She has asked me to get the word out that this is not only necessary to get action, it needs to be a top priority for signatures. PLEASE, PLEASE, tell all your friends about this.

[ginnyde]

Dave,

Signed it and sent it to 25 of my friends. Hope they sign it and send it on.

How was your golf outing?

[Donna G]

Dave I just went and signed your petition. Today by the way I heard your Doctor Joan H. Shiller of University of Wisconsin , Madison, speak of promising Phase 1 Agents for lung cancer treatment , here in the twin cities. Donna G

[Melinda]

Dave,

Thank you for both attending and keeping us updated.

I signed the petition and have forwarded it to a number of my friends hoping that once they read it, they will do the same.

On a slightly different note: How are you doing and how was your golf outing?

Melinda

[DaveGr]

I haven't been on for awhile, so I guess an updste on several things is in order.

The golf outing netted $6100 for the University of Wisconsin for Lung Cancer. The golf outing was slightly different this year. It raines most of the morning. The golf pro had the Great Lakes Radar on the internet. We were watching what was happening very closely. We were to start at 1:00 PM, and it was still raining at 10:30. The radar indicated that the rain would pass and there was nothing but clear weather to the west to include all of Minnesota and Eastern Iowa. We started right on time. Everything was going well. About the 4th hole, we all noticed that a large cloud buildup was forming to the north, righ over Wisconsis Dells. We also noted the clouds were not reaching Baraboo and they were moving east at a very fast clip. By the time we were playing the 7th hole, the temperature suddenly droped the winds shifted to out of the north and the clouds main a 90 degree right turn and slammed right into Baraboo. It rained steady for about 1 hour, however in that one hour the golf course gauge measured close to 2 inches of rain. The creek, which meanders throughout the course overflowed its banks flooding several fairways. The outing was obviously over. The dining room crew jumped right in and started setting up the dinner in the dining room. We originally had a tent set up for the dinner. We awarded all the prizes by drawing out names from a hat. We put eveybodies name on slips of paper, made a quick count of the prizes and it looked as if we had enough prizes for everyone. Everything turned into a party atmosphere and it worked out great.

Now, on a more serious note. On july 21, 5 days after the golf outing, was my monthly scan and oncology day. It didn't go well. The run of 6 months of having stable CT Scans has ended. A new tumor is growing in the lower lobe of my right lung. Being Stage IV, I am not a surgical candidate. Dr. Schiller is having me come back August 17, at which time I will be scanned again. We will then talk about treatment options, especially clinical trials. I have always asked for a trial and Dr. Schiller fully expected that I would now. This period gives her some time to review the available trials and pick out the ones that I qualify for. The wait also will give Dr. Schiller and her research team an idea of how fast the tumor is growing.

This will be my 6th battle against lung cancer in the last 3 years. Dr. Schiller is very optomistic that we have this one early.

I will keep you posted when we find out for sure what the plan will be. I am confident I will beat it again. I have been successful each time before and I will be successful again.

[betplace]

Dave,

I am so dorry that it's back. I hate this dreadfull beast. Good luck with the fight, I am sure you will win it again!

Blessings

Betty

[elnodel]

Dear Dave,

I am sorry about the return of the beast. But I'm glad you've got such a phenomenal doctor working on it all. I'm sure she'll be able to come up with something that will tame it again.

I've sent out the petition (and copies to friends as well) a little belatedly, I'm afraid, but out it is. Thank you for all you've done.

Ellen