I'm quite frustrated with the results of my treatment and I guess I just need a reality check.

I'm on my second recurrence - in October we learned that the cancer had metastasized into my lungs on both sides, with surgery and radiation not being an option. I went on Cisplatin, Erbitux, and 5-FU. I've done 3 cycles of that and on Monday had a high contrast CT scan to see how things were looking (I also had one just prior to starting treatment about two months ago).

The scan showed that most of my tumor and 'activity' in the lungs was 'stable', with a couple of the tumors showing a very slight reduction in size. The doctor was positive and said this is good. He said it was about as good as we could hope for.

I understand it's good in a relative sense. I understand it's good because with the cancer in both lungs it's positive just to keep it from spreading. But I guess I had set my sights higher. I had hoped to see significant reduction or elimination of the tumors after all this chemo. I'm looking at the scans and I'm thinking, all this chemo, and these results are as good as it gets?? I suppose the reality of my situation is sinking in. I'm certainly not giving up, but I find myself quite frustrated that we've (as the doctor says) "thrown everything we can at it" and all I can get is basically to 'stabilize' it. This is one tough opponent we're facing I guess and once again I think I underestimated it.

So the doctor gave me a choice, saying there was no right or wrong answer. I could go off chemo completely. Or, I could go off the Cisplatin and 5-FU and just do Erbitux for a few months. Or, the most aggressive approach would be another two rounds of all three, and then drop back to just Erbitux. He said he insists that I take a break after two more cycles of all three drugs.

I chose to do the most aggressive, so we're doing two more rounds of all three and then I'll go on just Erbitux. The doc says it's within possibility that of the three drugs, the Erbitux could possibly be the one producing the so-called 'results' I'm getting. And certainly if Erbitux alone would provide the same results, obviously it's much easier to take longer term than the full chemo regimen.

I went into this last round of treatment so positive, with the attitude that I'm going to kick this thing's butt once and for all. Now I'm looking at these scans that show barely any progress at all and I'm wondering how I can achieve 'kicking it's butt' if I'm giving it everything I have in treatment and this is as good a result as I can get. Wow.

I've been adamant that western modern medicine was the only way for me. Now I'm wondering if I have to open my mind up to alternative or other treatment options if this is the best I can do with the 'traditional' approach. I don't want to or plan to abandon the plan I discussed with the doc, but I'm still concerned that my progress is not adequate. Am I being irrational? Crazy talk?

Just venting I guess.....thanks for letting me do that. I'm only 41 and I'm bound and determined to beat this thing one way or another. This is just the first time in my journey that I'm really starting to question whether I'm winning the battle.

Steve

Steve,

It's hard to put myself in your shoes but you are saying exactly what I would be saying if I were you. I agree that I would have opted for more of the same and I would continue to try and remain positive that maybe the continuation would have a cumulative affect. I don't think I would seek alternative Tx's because I do feel that we have the best shot of attacking your cancer right here in the USA. I wish you the best and we will all be praying that this will work.

If there was an alternative that had peer reviewed and evaluated measurable results, we would tell you about it. Unfortunately we don't have that kind of evidence of benefit.

A good friend of mine (Glen) here added lots of time to his life by undergoing RFA to the lesions in his lungs. It is a localized treatment, does not have systemic side effects, and can be used selectively on the largest/worst lesions in your lungs. It is worth exploring even though it is not a curative solution, it might be a time buying solution, to give other options time to work, or new alternatives to be found in clinical trials. I wish that there was a better answer for all this. Please take a look at current clinical trials and see if there is anything out there that you qualify for in your area. It is possible that one of them could be added to your current plan.

Thanks Brian. I should have mentioned, one thing my doctor discussed with me was the possibility of clinical trials (east coast somewhere) if my cancer was related to HPV. He had an archived tissue sample of mine lab tested and it came back negative for the HPV. He was a little surprised in that I have never smoked or used tobacco. But, that eliminated one possible clinical trial. I'm confident there may be others and I won't give up looking.
I agree, if there was something out there in the 'alternative' realm that was proven we'd all be jumping on it. I guess I'm just finding myself being more open minded, perhaps out of fear! But I know you're right.
I'm sure we've all experienced the flood of information you get from friends and family about the latest cure for cancer. Just today I got one about linseed oil...yesterday it was Barley Life...last week it was Monavie juice. :-)

If you were not afraid, I would suggest that you were lying or abnormal in some other way. Appropriate emotions, no matter how negative, are best recognized and not rationalized. If this gets out of hand, do not be such a "tough guy" that you avoid taking clonazapam or something else to relieve anxiety. The Stones were right when they were referring to "mothers little helpers" - they are appropriate to keep things in perspective.

Each hospital has a clinical trial investigator/searcher. Make sure that you are using that person to the fullest extent. Also though far more time consuming, there is a clinical trial search engine on the other resources page of the OCF web site.

While your friends are not bringing you THE answer, revel in the fact that this many people give a &*# about what is happening to you. The other side of that coin is their best intentions can, after awhile, be a bit irritating. Americans know so little in general about cancer and the issues that go along with it. But they care ... and that matters.

Start them looking at the possibilities of monoclonal antibodies that have shown success in lung cancer. Yes, you have that and something else.... but any port in a storm that buys time. Irrissa might be a starting point. A commercial failure since it only worked in 10% of the people that used it, but in that 10% it worked 100% of the time. They are finding that with these kinds of targeted drugs, that genetic testing guides then to the people that have the genetic make up similarities of the others it worked in. They are now mapping those markers to do that testing first, and then decide if the drug will work for you before administration. One of the good things about monoclonal AB's and other targeted therapies is the side effects are minimal.