Andrewsmom

Geri - I am right there with you and so happy to have you as an inspiration. I will hit my 5 year mark in January. I am thinking about throwing a big party - kinda a celebration of life party but I don't want people standing around talking about what it was like when I was sick and how scared everyone was. Will have to give some thought as to how to avoid that. Coincidentally, I will also turn 50 in 2007. I have just been put in contact with a newly diagnosed lung cancer patient. I am going to make sure he gets to this site and reads your great news! Thanks for sharing.

I was moved to tears by this beautiful and inspirational narrative. I intend to forward it to everyone I can think of. Thank you so much for posting it.

Don: I totally get what you are saying and I actually did think twice about posting because of the very factors you mentioned, I was limited stage and I was also relatively young at the time (44). I can only hope that we won't have to wait too long before medical research will discover a treatment that will enable people with extensive stage sclc to see similar survival times.

When I was diagnosed with limited stage sclc in January 2002, the one thing I wanted more than anything was to find a long term survivor. With that in mind, I just wanted to share my good news at reaching 4 years since my last chemo treatment for ls sclc. At my onc appointment this week the doc said only one more 4-month visit and then we can cut back to twice a year plus annual spiral CT scan. For those of you still fighting this battle, keep fighting - there are survivors and I believe they are growing in numbers.

I was so freaked out by the thought of it (I thought the mask made me look like Freddie Kruger) that I took an Ativan before my first treatment. I realized right then that taking the Ativan was overkill for 8 seconds in the mask. After the first treatment, I stopped taking the Ativan. It has been nearly 4 years since my PCI and I am now 48. Sometimes words don't come quite as quickly to me when I'm talking but that could just be distrations with work, kids, husband, etc.

I am so so sorry for yours and Richard's loss. Like everyone here, I met Jen on the board but it turned out that we had an instant connection other than SCLC. I have worked for the Customs Service for 17 years and know Richard from when we were both at HQ. My condolences to both of you. Jen was a fighter. I am deeply saddened by her passing.

Jen Ackerman? I haven't seen her post in quite awhile and I recently lost all of my personal e-mail addresses so I haven't been able to send her a message?

My onc office just called and the spiral CT I had yesterday came back clear. Thanks for all of your prayers and good thoughts. I'm sure they contributed to this positive result.

Tomorrow I will be having a spiral CT of my chest. There is no reason to believe there is anything there - it's just something my onc thinks I should do. I am 2 weeks away from my 4 year anniversary since dx. Please send good thoughts for a clean scan. My appointment is at 11:30 EST.

If my onc recommends it when I see him next Wednesday, I'll have the test...but I won't like it. Thanks for all the advice and support. I am looking forward to celebrating year 4 since dx on January 22.

OK, I know this is silly but my onc mentioned at my appointment 4 mos. ago that he wanted to send me for a spiral CT after my next visit. He said that he sent two other long term survivors with no symptoms and the scans found SCLC growths in both. I will reach my 4 years since dx next month. I've had no recurrences and feel great. So, now it is time to go back for my quarterly appointment with my onc next week and I am scared to death that he is going to remember to send me for the scan. I don't think I want to know if there is anything there. I know this is ridiculous because the whole point of the Spiral CT is to catch the cancer early enough to have a chance at successful treatment. So, why am I such a coward? Thanks for letting me vent. My friends and family just don't understand how I could feel this way.

I think this is pretty much the standard first line treatment for SCLC. I was on it and it, along with the radiation reduced my tumor by 100%. That was nearly 4 years ago and I've never had a reoccurence (knock wood). My doctor did mention, however, that Comptazar (spelling?) has replaced Carboplatin as the first line of defense. I had that as a follow-up. My doctor believed that you don't wait for it to come back, you just keep hitting it with everything in the arsenol even when all indications are that it is gone. I lost my hair and was queasy for a few days after the treatment but ativan (my drug of choice)knocked me out enough so that I could sleep through it until I felt better.

Jen: First of all, good for your onc. He should be your advocate with respect to other medical personnel. Re the Glevac, I have not been on it but everything I've read says that it has alot of promise for Non-small cell. We can only hope that those promises hold true for small cell as well. Thinking of you every day.

Pull up the U.S. Equal Employment Opportunity Commission web site. There is some information that may be helpful to you if you choose to pursue your complaint.

I've found that it gets easier as more time goes by but I doubt it ever goes away completely. I am nearly four years out and I only start to think about the possibility that the cancer may have in the 3 days between my x-ray and when I get the results. Hang in there.

How are your doing Jen. Thinking of you constantly

I'm not sure what your definition of long term is but I was diagnosed in January 2002, had the same treatment (including the PCI) that you are having plus an added dose of Comptosar just for good measure. By the end of the lung radiation, Cisplatin and VP-16 treatments and the PCI there was no evidence of my tumor. I think this was probably about 10 months after my initial diagnosis. I have had clean scans ever since (3 1/2 years). I feel great and am completely back to life as I knew it before cancer. E-mail me if you want to - I'm happy to talk about my experience with you. I know that when I was first diagnosed, finding a survivor was the #1 thing on my mind.

Just wanted to add a few things to the encouraging words that have already been said. First, the chemo treatment is protocol for limited stage sclc. Is your Mom also getting simultaneous radiation to the tumor area at least once if not twice daily? I believe that is also part of the protocol. I was told this by my first oncologist and also by a second opinion at Sloan Kettering Cancer Center. Secondly I wanted to let you know that, like others on this board, I am a survivor of this disease. I am 3 1/2 years out from diagnosis and have never had a recurrence of any kind. I was 43 when I was diagnosed. Good luck to you and your Mom. You can be very optimistic about her outcome.

Donna: Ditto Joannie's post. I was diagnosed February 2002 and ended all treatment in October 2002. I have been NED (no evidence of disease) ever since. My onco considers me cured. There are survivors and our numbers are growing. Rebecca

This is probably too late to be helpful but I never get a PET Scan or an MRI without loading up on Ativan. It's the only time I take it now that my anxiety from the disease has disappeared but I would never catch myself without a supply.

Nancy - I will be praying mightily for you. This is the same treatment I had except that I only had radiation once daily. That was 3 years ago and I have had nothing but good news since then.

I know that we have all talked about how there is no cure for this crappy disease but on Wednesday I went for my 3 mos. Onc appt. and he told me that when a patient is 3 years out from dx with no recurrence since dx, for all intents and purposes, the patient is cured. He also said that in his 30 years of practice, he has never seen a limited stage sclc patient relapse. So, since I meet this criteria he said he considers me cured and doesn't want to see me for 4 mos! I don't know if he is right in this but I'm going to take it as the truth.

That is great, Jen. Here is to a life filled with NED!

Just wanted to add my 2 cents. I have been NED since 6/02 - that is 2.5 years. I will be 3 years from dx next month and I feel great - strong and healthy and able to do everything I was able to do before dx. There was a time when I was obsessed with finding survivors - I still am, to a certain extent. The longer I am NED the less concerned I get although the feeling can come over me at a moment's notice. When first diagnosed I would have loved to hear about someone who is like I am now - nearly 3 years from dx. Now I want to hear about people who are 4+ years from dx.

I had the Comptosar and taxol after I finished the PCI which was after I finished the Carbo/VP-16 with simultaneous radiation protocol. It's funny. I went to Sloan Kettering and they concurred with Carbo/VP-16 with simultaneous radiation followed by PCI as the protocol. However, they never mentioned Comptosar. I stumbled upon an onc who used it as the last part of a 10-month treatment plan quite by accident. I love my onc. He warned me about being sick with the Comptosar and the onc. nurse gave me special instructions for using imodium AD right when I started the Compotosar/Taxol cocktail. I learned to follow those instructions to a T. I don't remember them now nor do I remember any of my dosages. Sorry. Once I was done I forgot everything like a bad dream.