stage 4 lung cancer

My husband, Vic, was just diagnosed with stage 4 lung cancer. There is a 2 inch mass on the top of his right lung and two other spots in the middle of his right lung and on the right lower lobe.. He also has cancer in his pretracheal lymph node. He has seen Dr. Tucker at Southwest Regional Cancer Center in Austin, Tx. He recommended chemo and no radiation or surgery. Also, a trial was mentioned that requires a prerequisite of only one prior chemo therapy. It involves tarceva and avastin, both alone and in combination. Vic has a referral tomorrow to MD Anderson Cancer Center, Houston to see Dr. Fossella for a second opinion. We would like to hear from anyone who has stage 4 NSCLC and their treatments. Thank you from our family to yours.

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Echee,

I have no direct experience with stage 4 - I am Stage 1a, but Dave Grant, one of the founders of this site, is almost (September 11) a five-year survivor. Check out his blog and read some of his comments.

So far it seems you are doing everything right - getting a second opinion from one of the two best comprehensive cancer centers in the U.S. is a great step. Once you are in the system, you will be able to access all the clinical trials that Dave talks about.

Stage 4 used to be a diagnosis that left no hope, but that is not the case today. The new treatments and procedures are changing everything... and more are in the pipeline. You have to be assertive and go for the newer drugs (sometimes in trials). I've even heard more and more cases of where they will operate on stage 4. I'd certainly check out if they could just deal with that one node in your husband whether taking out the right lung wouldn't be possible. Certainly something to ask the people at M.D. Anderson.

Courage

Chum

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Hi echee, I have stage IV, tumors in both lungs, have received chemo with good results, ( stopped tumors in tracks, set that way for 16 mos, and now they are awake again. I too, would like to try clinical trial. Good luck Vic and let me know results or just keep in touch with LCA. Have a good day and ask a million questions to medical people until you folks feel comfortable with answers. A survivor, chuckles66

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Hi,

I have stage4. I originanlly had chemo and radiation in combination. I think they added the radiation as my airways were being squashed from the lymph nodes in my chest, and they needed to get me breathing again fast. It worked, the lymph nodes stopped growing almost immediately, and as far as I know there is no activity in there anymore. However both my lungs are still full of it.

After that I have tried Tarceva, but unforturnately it didn't work for me.

I am just about to start another chemo.

I hope you your husbands treatment is very succesful.

Lisa.

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Echee:

As Chum predicted, here I am. Chum is exactly right, I am Stage IV and will be celebrating (?) the five year mark in just 6 days, September 11th. It is hard for me to remember many of the events of that day as at 2:30 PM I was told that I had a tumor in the lower lobe of my right lung and it appeared to be cancerous. Lung Cancer crept into my every day vocabulary that day. As soon as I was told that I have Lung Cancer, everything else than happened that day, became a blur. I had a regular appointment on the 11th as follow up to a CT scan I had on September 7th. That CT scan was done as follow up to injuries received in a car accident I was in August 1st 2001.

I considered myself lucky at that time, as they staged it at Stage I. I ended up having two surgeries, one in October 2001 and the second in September 2002. In April 2003, when I went for my 6 month post surgical checkup, a CT scan was done as part of the check up. This CT revealed that I had several metastatic lymph nodes in the middle of my chest. My thoracic surgeon suggested that I get to my oncologist immediately, as he could no longer operate. I called my oncologist and had a appointment right away, the next day. The surgeaon's nurse gathered all the necessary information for me (scans, scan report, and the surgeon's notes) so I could take all this to my oncologist.

When I saw my oncologist she ordered a CT scan of both my chest and abdomen. The CT of the abdomen showed that I had active lymph nodes in my abdomen as well. Next I had a PET scan and this revealed that I had multiple metastatic lymph nodes throughout much of my body. Originally I was scheduled for medialsteinoscopy, where they make an incision just above my collar bone then they snake a probe down into my chest to look at the lymph nodes and biopsy as many as possible. That was avoided as the PET scan showed that I had multiple nodes on the left side of my neck and they would be easier to get to and far less painful for me. That biopsy was done with a local anesthetic, whereas I would have had a general anesthetic with the medialsteinoscopy.

Because the cancer had now spread outside of my chest I was re-staged form Stage I to Stage IV. I was in a state of shock until my oncologist gave me some good news. She told me that Stage IV Lung Cancer is treatable. She went on to tell me that she could not cure the cancer, but could treat it for however long is necessary and however long I wish to continue treatment.

Since that oncologist is no longer at the University of Wisconsin Comprehensive Cancer Center, my new oncologist learned very quickly that any time I have another recurrence I want treatment. I am now in my 4th recurrence and my 6th regimen of treatment overall. This time I have liver tumors and had some lung tumors which have resolved since I began treatment. The liver tumors were still there on the July 19th CT scan. We are hoping that the September 26th scan will show regression of the liver tumors, which will mean I am responding to treatment. If my overall attitude and health is any indication, they must be regressing as I am feeling pretty good right now.

No one has any idea of why I have survived as long as I have with Stage IV Lung Cancer. According to statistics, which are not 100% accurate, I should have died by October 2003, but here I am just 6 days away from being a 5 year survivor overall. I have proved that Stage IV Lung Cancer is survivable. My approach has been Attitude, Spirituality, Support, and Hope. I have learned to blend all four of these traits together, one being no more important than the others. I have also informed my oncologist that I have promised my family that as long as treatment continues to be available I will continue to seek treatment. I shall never quit hoping for a cure. In the meantime I will buy time through treatment.

When and where there is treatment, never, ever, give up.

Dave Grant
Co-Director LCA Survivors Community

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echee, my mom was diagnosed 1 year ago w/ stage 4 nsclc. she had 1 round of chemo that did not work. she started tarceva april 3 and has been stable since w/ very few side effects! her attitude is amazing! she's totally living her life.I believe one must have a round of chemo first as tarceva is a second line treatment. God bless you both. shellbee

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Hi, Echee - my friend, Krystyna is diagnosed: I copy it from the doctor files: "Nodules are noted in both lungs.There is a 5 cm mass in the right lower hilar area.There is a 1,5 cm ovoid mass in the left apex.There is probably a small,subcentimeter mass in the lateral right field.No infiltrates are seen."
She already took 14 days of radiation, 4 chemo every 3 weeks. She is taking Procrit every week, and after chemo she is going to take Leucine every day. She do not try Tarceva yet, and her doctor do not recomend it , in her situation. She is weak and have whizzy breath. She is waiting for your information, what is the doctor second opinion. I hope, your husband will have a good news from the doctor and I wish you both the very best. -Danuta

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M.D. Anderson is certainly the place for another opinion. My husband is on Avasten in clinical trial. He has been on it for 2 1/2 yrs and was given 3 months to live Jan, 2004. He is now tumor free and the "poster boy" for Memoorial Cancer Center in Fl. He is the longest living survivor in the trial, gettin ready for 40th infusion this week! He has gone through all of this without a port and doesn't miss too much work except for all the dr and lab appts. We are active in Gilda's Club in So Fl and gain lots of info from other lung cancer group members. Tarceva seems to be quite effective and I've read that combining Avasten and Tarceva is another way to go. Avasten seems to be the new IN drug for quite a few different cancers (fda approved for colon ca).

if I can help further, let me know.

Bups

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Thank you so much for your kind support and information. I’m Vic, Eileen’s husband. She wrote the letter and shared with me all your wonderful responses. We’re slowly feeling less terrified since the shock of receiving the news. For my update, the second opinion I received at MD Anderson Cancer Center in Houston confirmed the first oncologist’s view that the cancer, since it has spread, is not operable and radiation would not be effective. I am fortunate that the tumors are confined to my upper, middle and lower right lung lobes plus a lymph node, and that my abdominal CT scan, PET scan and brain MRI scan show that it has not spread any further. The main tumor in the upper lobe is 5 cm (about 2 inches), but the other spots are much smaller. Still, it is stage 4 and we’re only left with chemo treatment. The current clinical trials for stage 3B or stage 4 NSCLC available at MD Anderson are both first line studies (no prior chemo) that combine the two “standard first line” chemo drugs (Paclitaxel and Carboplatin) with either one or two additional investigational drugs; either AMG706 and/or Panitumumab; or Sorafenib and/or Bevacizumab. Looks like I may qualify for one of these depending on the blood tests they run..This is in contrast to a trial being conducted here in Austin that is a second line study (after a failed first round of std chemo), that uses the two investigational drugs, Tarceva and Avastin. While some of these drugs may be new, if anyone has had any experience with these combinations of medicines I’d appreciate any feedback you can offer. We would like to stay close to home but if my best chance is one of the trials in Houston, that’s what I’ll do. Thanks for all your help and support. You have made this new journey a lot less lonely.

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Hi Vic Is there any way the drugs for this trial could be given to you at a facility close to homePerhaps you could get into the trial with protocal being met and monitored near home. If not, M.D. ANDERSON is one of the best. Attitude is 3/4 of the battle and positive thinking. Is there a Gilda's Club in your area? You can gain lots of support there as well as information from other survivors. I'll be thinking of you and your family. Bups

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