Ry

The Revlon web page shows additional sponsors of the Revlong Walk/Run as the Entertainment Industry Foundation and the New York Times. Maybe we need to write the New York Times! Also the 2nd Walk/Run takes place May 10th in Los Angeles. To find this go to Revlon.com and click on the Walk/Run, that takes you to another page. I noticed on the ALCASE site that one mother is doing the walk in honor of her daughter that died of lung cancer to raise Revlon's awareness. She is getting a team together.

Tammy, where is her tumor? If it is on major vessels or in the mediastinum they may feel it can't be safely removed. HOWEVER, if it shrinks with chemo or radiation (depending on the location) she may be able to be operated on in the future. Several people on this board were also told they were inoperable and were able to be operated on successfully. So take heart, things may change. Your mom's case is much like my husbands, he also had no symptoms till wham ~ the tumor started to cut the blood supply returning to his heart. See if you can get info on why they feel they can't operate.

Sorry about your mom. If she is stll in the hospital, contact the discharge planner. That's her (or his) job to plan her discharge. Let the professionals do the work for you (or the social worker as Connie suggested).

So happy to hear the news that Mike is doing well. Keep doing what you're doin'!!!

Katie & Dave, may as well move it up, sounds like everybody is on the bandwagon and ready to play. They're already getting letters, etc. may as well get some publicity too!

Here's my letter to Revlon, took a slightly different approach. I am writing to inform you that I will be participating in the boycott of Revlon products being organized by the women (and men) of Lung Cancer Survivors for Change. Lung cancer is the number one killer of women from cancer, it takes almost twice as many women a year as breast cancer. Your decision not to fund it with the proceeds from your upcoming Walk/Run because it is not a "women's cancer" is wretched. In addition to the women diagnosed with lung cancer thousands more are caring for husbands, fathers, mothers, sisters, and brothers and praying for a cure for this horrible disease. I am one of those women. I am watching my husband battle lung cancer along with my 3 small children. Their childhood will never be the same. Our lives have been forever changed. One thing I can do to help my husband, is to stop buying your products to raise awareness about this issue and the need to fund lung cancer research. Believe me, I am really going to miss your Age Defying Make Up and several other products. I am asking every person I know to do the same. If you truly care about saving the lives of women, I hope you will reconsider your decision.

I sent out all my letters using the e-mail for Christine listed previously, hopefully she passes them on to Revlon. I notice on Revlon's website there is a "contact us" button so that's another option to write to them also. I will also fax from work a letter and e-mail the local medical reporter for the local paper. It would be helpful to have what was actually said by Revlon to pass along. I run a fairly large company with 200 employees (91% women), I am going to put something in our newsletter. Do you think it's a problem that our boycott date is past the run date? Isn't the run on May 3rd? Also, I will e-mail the fax numbers to everyone in my address book asking them to fax Revlon or call.

I did tell the woman in my e-mail that I had purchased my last Revlon product and would ask everyone I know to do the same. If everyone sends a note asking the people in their address book to write her and to boycott the products and to pass it to everyone in their address book, well hey, as my kids say, "do the math." She'll have hundreds of e-mails and lost customers.

Thanks for the correct address, mine was returned. I am mailing it to everyone in my address book also asking them to send an e-mail.

So sorry to hear about your husband. My husband also has NSCLC and was diagnosed in June. I am a little ahead of you in all this, but remember so well the shock and devastation in the beginning. It is so hard to bear. Please feel free to send me a private message if you want to. Maybe we can meet in the chat room and vent together. We will all help you and support you.

God I love a happy ending.

And maybe you should get a little concealer on those dark circles....

Ok, I am so confused, I need Dr. Sam to step in here and answer you. I am assuming you mean necrosis and not necosis, correct? Isn't the point of radiation to cause necrosis (death of the tissue radiated)? I know they have referred to my husbands lung as necrotic from the radiation. Do you think they radiated too large an area? Either way, the damage is done so now we need fixit! Have you read or listed to Bernie Siegel on tape? I suggest in addition to prayer you start using his visualization technigues. How about visualizing the dead tissue being healed and repaired? If you have not heard his tapes, you should get them, they are very calming and healing.

So so sorry Peg. I hate this crap! You didn't say if they were going to another chemo. Taxol/carbo did nothing for my husband either, he then went to taxotere (no good) then to gemzar (some success!). So take heart, maybe the next drug will be what his cells respond to. Hang in there and keep us posted.

Starting with Carbo/taxol then going on to taxotere seems to be protocol. My husband had the same however he went to gemzar after taxotere instead of Iressa. Sloan Kettering has an excellent reputation. I am so sorry about your wife, I know how devastating this is for you and your children. To maximize survival, eat healthy, take supplements, everyone has different suggestions but my husband takes flax seed oil, CQ10, vitamin C, multi vitamin, coral calcium, and a few more. Once you start reading and researching you will get an idea. On this board are many other suggestions for juices etc. All the best to you and your family.

Make sure they are giving her shots for both the red blood cell counts (Procrit) and the white (Leukine or Nupogine (sp?). They are letting her counts get too low and that's bringing on the pneumonia. Same thing happened to my husband till they started him on Leukine in addition to the Procrit.

Well, the radiation oncologist is getting back with you correct? It sounds like he is checking with the surgeon to make his best decesion. When he does, question him extensively about his opinion and how much radiation etc. your husband will get. Radiation is the rad onc's field, not the surgeons and I would give more weight to his opinion and then maybe get a 2nd.

Well I understand your confusion! When you say radiologist, do you mean the radiation oncologist? In other words, the person that would set up the treatments etc? If so, I think his opinion trumps the surgeons, as that is not his field (the surgeons). Maybe a second opinion?

Well Karen I for one could certainly use those hints on the SSD application. We have been working on ours for days!!!!!!!!!!!!!!! My God, how many pages is this thing? We are doing it on line and get to a stopping point, come back to finish and go on, think I'm almost there and NO more pages!! My gosh. Please post anything you have to help out myself and others. Thanks

So sorry to read your post. I love this board but I hate to read about what this disease does to good people, especially families with children. Your oldest is 16 so that means you and your husband have essentially been together since you were kids, and I can understand the shock and devastation you must have experienced. My husband also has lung cancer although we are older than you and your husband we have younger children 15, 11 and 4. I know the statistics are scary, but you just have to go ahead and make the best of the good days. My husband and I had planned for retirement etc. and often we did not take a family vacation because we didn't want to spend the money. Now I wish we would have enjoyed life a little more when he was healthier. If nothing else, lung cancer sure does bring an understanding of what's important in life. Somewhere I read (and it may have been on this board, I don't remember) the phrase "dream new dreams" and that is what has happened. Now our dreams have changed. Instead of saving for the future we are more concerned with today and just having him here. And while you have lost your house, you still have your husband and your family. So live as much as you can, and try to dream a new dream. And on a practical note, your husband should get shots for his white blood cell count too. Ask about leukine or neupogin (probably spelled that wrong.) Know that unfortunately there are lots of spouses here with you and we will help however we can.

Teetlee, At one time Tiny posted extensive info on most the hospitals in the US doing RFA. It was on the old board and I think it came to this one, but I may be confused and it was the "2nd" board. Anyway, you can e-mail Tiny and ask for the info if it is not on this board. Best wishes, Ry

Yes, please make sure you do get a second opinion! It was the best thing my husband and I did. Just to add to Cindy's note, make sure you take the origianl films of her scans. When we went we had a bad copy of the last scan that we got from the oncologists office and had to go to the hospital to get origiansl for the team doing the 2nd opinion. Our family doctor gave us the referral. The oncologists were not offended, it is quite common and they (unfortunately) have plenty of business. Best wishes to you and your family.

Renne, it may be something as simple as dehydration. This will cause confusion and dizziness too. Try pushing lot's of water and see if it improves any.