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Hello Reader ....

 

I've learned so much from the folks in several of these discussion groups.  I am now seeking a specific group .... those with non small cell LC and those that had effective treatment and now they find their situation has changed.  After a lobectomy, Chemo and a three year 'all clear' diagnosis, I began growing nodules again and in Aug of 2008 had a second operation (to remove the nodules) and then, not being able to remove everything, I started what I call 'Chemo II'.  I am on different drugs and am having different experiences.  So far I've not found another 'like me' ...and I'm hoping one of you / some of you out there have some experience.  If so, please identify yourselves and I"ll ask you some questions.

 

Hugs to all .... mekbride

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Hi mekbride,
I'm a caregiver to my mom, but maybe I can help. I know pretty much everything she's been through, all her aches and pains, side effects, etc. My mom sounds somewhat similar. She had whole brain radiation, a craniotomy, a gamma knife, chemo, radiation to the lung, and then a lobectomy before being given the "all clear." That lasted about a year and a half before another brain tumor was found, leading to another gamma knife. Long story short, it's since spread to lymph nodes in her groin area, as well as bone mets to the spine and knee and she is currently on "chemo II" (second line chemo- Alimta). If this sounds similar to you, feel free to ask me any questions, I hope I can be of some help-
Yes - more cancer for sure - but definitely the return. I am on Alimta as well. I get it every three weeks and it has stabalized me (so far) since Feb. They are going to start lengthening the times in between (next treatment will be four weeks) and monitor, and maybe five. I really would like to know (as the docs sure won't tell you or talk about it) ... how long can I expect to live like this. Is it indefinite? I don't think they have a lot of substantive information as Alimta is relatively new ....but who is keeping track of the stats? Are there any long-term side effects? Or doesn't it matter. Those are the type of questions I have .... Thanx~ mekbride
Hi mekbride. My mom has been on Alimta since summer of '09, when the cancer returned to her knee. Her doctor seems to think she can go indefinitely like this, as long as her bloodwork is good and she is tolerating it. I asked him once about stretching it out to every 4 or 5 weeks, but he didn't think that was a good idea in her case. While on Alimta, the cancer spread to 1 spot in her spine, but overall it seems to be controlling things. Who knows what would happen if we stopped it? It's scary to think about. Her doc calls it "maintenance chemo."

I don't think there's a whole lot of stats on Alimta, as people with LC are just now living to the point where they are on 2nd and 3rd line treatments. I think it offered like 10 more months average survival time, but don't quote me on that! I found a link to one study about Alimta's use as a second-line treatment, if you're inclined to read scientific journal articles, here it is: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2500250/

I'm sure there are more up-to-date stats since this one, but it's about the most recent I could find in my rudimentary research. I just remember her doctor saying it offers the best chance of progression-free survival for second line. I think the side effects are minimal compared to platinum and first-line chemo-- things like neuropathy, diarrhea/constipation, low WBC count, etc. Certainly nothing to sneeze at but I don't think long-term it's anywhere near as toxic as carboplatin or taxotere or those types of chemo, where they could actually kill you if given too much.

I hope that helps, let me know if you have any more questions! I assume you're on folic acid and B12 with the Alimta...
Hi All,

Since everyone seems to be in a question and answer mode, may I throw a feww out there myself? I read so many different posts on this site and I've gained a great deal of knowledge from many of you, but in order to get into the "Loop" I need to find out what some of the terms everyone uses here so I can get caught up. I could probably "Google" most of the words or terms, but I enjoy hearing from the experts...YOU...instead.

1. What is a Lobectomy?
2. What is a "Gamma Knife", sounds scary!
3. What are "Mets"?
4. My doc is sending me to radiation after 6 cycles of chemo. After the 35 rounds of radiation, then I begin "Maintenance Chemo", low dose for 10 more cycles. Will that be what you are referring to as "Chemo II"?
5. I am Stage IV nsclc. I'm not sure how many on this site are stage IV, but the treatments seem to be the same for stage II or stage III as well as IV. My Oncologist is ALWAYS quick to remind me that stage IV is stage IV because the cancer is in my bloodstream and can hide and show up later somewhere else. Does it always show up elsewhere? (I know in the case of GADawg's Mom it has)
6. Am I being nieve or in denial thinking I can eventually work really hard and reverse my stage into a lesser stage number and actually improve overall? If it's attitude, frame of mind, Living a positive attitude, Faith in God, trying to eat all the right things...then I'm on the right track...or am I just kidding myself?

Thanks for any and all imput. Like I said some of this I could have "Googled", but I much more enjoy hearing it from the experts right here at LLL.

Take care all and God Bless!
Art
Hi Art,
1. A lobectomy is when they surgically remove a lobe of the lung. Your lung has 2 sides, one side has 2 lobes, 1 side has 3 lobes. This is different from a wedge resection, where they just remove a "wedge" or piece of a lung.
2. Gamma knife is also called stereotactic radiosurgery. It's like an intense beam of radiation that's focused on one spot precisely that has been mapped out. Whereas "regular" radiation is delivered to a tumor in your spine, or knee, for instance, but it's not as precise and focused- the whole right side of your knee might be radiated, for example, instead of 1 tiny spot. There are probably other differences but that's my understanding of it. Someone correct me if I'm wrong.
3. Mets stands for metastases which means the cancer has metastasized, or spread. So a brain "met" is a tumor that has spread to the brain.
4. Yes, chemo II would be maintenance chemo as your doc calls it, or 2nd line chemo
5. If you're stage IV, it means the cancer has spread from your lungs to a distant site. I believe to be stage IV, they would have seen it outside of your lungs to stage you that way instead of IIIB or something like that. In my mom's case, the found 3 brain tumors plus a tumor in the lung. Testing showed that it was lung cancer, so the mere presence of the tumors in the brain told us it had travelled (metastasized) through the bloodstream to the brain and was stage IV.
6. I may be wrong, but I don't think you can "reverse" stages. But I wouldn't worry so much about stage numbers. Everyone is different. In my mom's case, she has outlived the stage IV stats and had 2 operations, when most say stage IV is inoperable. Personally I think it's a supernatural mix of positive attitude, tenacity, knowing your stuff and being a ferocious advocate, and sheer luck. But that's just my opinion!
Hi GADawg,

Not only do I appreciate your opinion, I also appreciate your simple to understand explanations to my questions. Even Google would never answer these questions the way you just did...and I thank you! I feel like I just had a crash course in LC 101. My doc didn't refer to maintenance chemo as "Chemo II", you and Mekbride did, that's why I was asking. I just finished round 6 chemo a couple hours ago and just had this feeling that the door closed behind me, and it's moving on to another questionable, somewhat closed door for radiation. (different hospital, different staff, different procedures etc.) That's why I jumped in on you guy's conversation.

In my case, with the first set of "Scans", it showed a mass in my right lung and some abnormalities in my right lung. That's where my Oncologist arrived at stage IV. In the most recent CT Scan, it showed some shrinkage to the mass in the right, and showed nothing in the left lung. That's where I came up with the question about reversing and lowering the stage numbers. Also, the Rad/Onc, as he previously explained to me, is "Mapping" out my particular "Plan" of action for radiating the mass in the right lung. That sounds a lot like what you described as the gamma knife, whether than just general radiation to an area. Guess that one I'll found out in due time.

Thanks again for taking the time and sharing some of your experience.
Art
Hi Art, you're very welcome. Gamma knife is very different than regular radiation. I'm sure you're just having regular radiation unless your doc said "gamma knife." Even regular radiation has to be "mapped." I probably didn't do too good a job explaining that, sorry if it was confusing. As for staging, I've found different information regarding stage IV on different sites. I re-posted our Q&A exchange on the caregiver forum, because I think your questions were so great and that all of us could use a refresher on Lung Cancer 101!
Hi Art and GADawg ....Aren't we lucky to have LCA and this forum for conversation? My dad died of lung cancer in 1990 and there weren't the drugs nor the information and tools. My mom died of lung cancer two years ago - she outlived him by 10 years. She didn't really want to know much - I think that change has been passed to us. We are able to google and to communicate with one another - and I swear, it's the best thing. Art, as you've been reading, we are indeed the lucky ones. We are living longer. I myself named Chemo II just this, because in 2006 I had months of chemo and didn't know enough to ask a lot of questions. I don't know if the docs restaged me, but the cancer was GONE when they finished treatment. When nodules began showing up again two years later, and I had a second operation, and then more but very different chemo, I thought - "what can one call it ... to differentiate it from chemo the first time around." That's when I started talking about surgery I and II and Chemo I and II. Sometimes I find I have to clarify because people think it means the second actual 'treatment' of chemo - but I say 'no such luck.'

I had no idea what would happen in recurrence - and I had no idea that this new chemo drug had been recently improved. This maintenance that we speak of just didn't exist before. That's why my questions - as while I know I am part of the people being watched and studied to someday be able to answer my questions, I'm always wondering if someone has something they will tell me.

The closest to long-term hope I got was from my regular physician. I live in WDC and Elizabeth Edwards goes to Georgetown's cancer center. Doc told me that my life is/will be like hers. She's been final stage for a very long time. She's living on maintenance cancer drugs.

I think all the things you mention are important for lengthening life and quality of life, for sure. But I must tell you - last nite I attended a session for patient and caregivers - and a couple that was there talked about eating right and doing the right things, for lengthening life. I had to speak out. And did. I told them that while I 'try' to eat the right things, my water is replaced by soda, and candy is everywhere. That I would rather enjoy these things that I always have liked a few weeks less, than eat brocolli all the time for a few weeks more.

There is one area that I've never seen anything on - and that's our weight. My experience was a 50 lb weight loss during chemo I. And then I gained it back - slowly, thru recovery. I am in pretty good shape because of swimming and all, but where docs used to urge me to lose, they no longer do. I think they watched me be able to battle this demon because I had the extra weight - so even at 50 down, I looked 'just right'. Perhaps it's self serving to think so - but aren't they always watching so we don't get too thin? Maybe that's a benefit? Haha.

I'm glad we are helping you in your journey, as you are all (even if you aren't in recurrence) helping me~! Hugs all around. mekbride
Mekbride, your situation sounds very similar to my mom. She was always overweight, 200 lbs at least, she's probably lost 15-20 lbs. so far but she's been steady for a while now. I feel (and her docs do) that the extra weight allowed her to tolerate chemo so well! Now we don't want her to lose anymore, and joke that we are her ice cream "pushers"! I also have similar thoughts on nutrition- my mom has always been a pretty bad eater, to be honest- fast food, Twinkies, junk food, etc. It's what she was raised on, and what she likes. To change all that now, especially when food is one of the last things she can still enjoy, would be rough on her. She doesn't want to eat broccoli in her final years/months, and I'm not going to make her.

As far as the maintenance chemo, her docs call it both maintenance and 2nd line. They also describe it similar to how your doc compared you to Elizabeth Edwards- her doctors describe LC as a "chronic disease" and compared it to diabetes-- something you can live with and "manage." So far, we've been "managing" since her recurrence, and I hope we continue to do so with no more slides downhill. I hope the same for you, hang in there!

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