Good Morning Leroy~ I wonder if they have tried to discover just what triggers your particular cancer to be so aggressive?
With my breast cancer, twenty years ago, they took some of the "Met Cells", put them in petri dishes (I was told at the time), and watched and waited to see just what set them off and made them grow. Well after a while, my wonderful doctor was able to tell me that when the cells were fed estrogen, they "took off like crazy". So they then focused the Chemo and therapy on ridding my body of those hormones which my particular cancer thrived on.
Don't they do that anymore? You have said that your particular cancer was very aggressive, well I would wonder what YOUR trigger is to cause them to spread to so many other areas when you attack them at the places on your body that they attack. It's as though they are constantly running away, hiding, and finding new sites.
Oh, how I wish they could find the "trigger" for you.

Sent by JCR | 7:55 AM ET | 09-11-2007

'Morning Leroy,

There is a tone in your words that is disquieting. As though, you may saying enough is enough. Please, be kind and gentle to yourself. Do nothing rash in making decisions for treatment. Weigh all options, as you obviously have in the past.

You know there are lot of people behind you and standing with you through this trip.

Sent by Sue Chap | 8:06 AM ET | 09-11-2007

Leroy
Your thoughts today are interesting as always. It did make me realize that all of us that have had cancer and treatments are building a foundation for those that follow. One thing works and one thing doesn't but after enough of us go through it a pattern develops and it helps our doctors help those on down the line...those that are newly diagnosed or may be in the future. As Yoda said, "Do or do not, there is no try."

Sent by Patricia A | 8:57 AM ET | 09-11-2007

Leroy, it's sad to see you musing about what options for treatment remain for you. Understandable, but sad. It's certainly not an enviable position to be in, but I'm glad that you treat where you do, and that there ARE options. Consider yourself hugged.

Sent by Nancy K. Clark | 8:59 AM ET | 09-11-2007

What have you got to lose? Do whatever it takes to stay alive? Of course we all tell our loved ones that, we are the selfish ones on the outside looking in. We are the ones wanting them here for as long as possible. I know they want to be here for as long as possible as well, but they have to live it. They have to deal with all the side effects, the 'new normal', the loss of control. At some point they are going to say enough is enough. They have that right, and we will be grateful for the courageous fight they have put up to stay with us as long as humanly possible. On their terms.

Sent by Gina B | 9:02 AM ET | 09-11-2007

I think you are being BRAVE to be willing to try clinical trials - I hope I don't have to make that decision. I have already done much more than I said I wanted to. Been slashed, burned and poisoned so far. What's next? I admire your preserverance and thanks for the support and sharing. You are so very special Leroy!

Sent by Vicki (FL) | 9:14 AM ET | 09-11-2007

Leroy,
I'm so sorry about your prognosis. Please try clinical trials. I know it must be a very scarey time.
I have advanced multiple myeloma, which has not responded to a 'transplant' and various chemos. But, like you, I keep trudging on -- scared but hopeful. All the best when you make your decision. I'll be thinking of you.

Sent by Maryanne McGonegal | 9:23 AM ET | 09-11-2007

Your thoughtful essay today makes me think of what my radiation oncologist, Anas El-Mahdi, said when I first met him 22 years ago: "My job is to make sure that the treatment is not worse than your disease." I did not understand the wisdom and Hippocratic care in that introduction until later, but Dr. El-Mahdi knew that the quality of life calculus is important to look at when weighing one's options. He did more than treat my cancer with his insights. And clinical trials -- please make certain if you do those that the goal will still be YOUR highest good, and not just the protocol for research purposes. Research is very important, but you want your needs to still be addressed in the process. Doubtless I am stating what you've long since known. But ever since that remarkable play about the English professor in a clinical trial of potential cancer treatments (sorry, can't call the name or playwright right now), I've been more aware of the need to structure the terms of the research participation. Blessings for your journey, thanks for your humor, huzza for your clear-eyed and open-hearted way of sharing!

Sent by Sarah | 9:32 AM ET | 09-11-2007

The play I mentioned in my last message is "Wit," by Margaret Edson

Sent by Sarah | 9:34 AM ET | 09-11-2007

Leroy,
Do whatever you choose to do -- without judgment. Whenever you make the difficult decision that "enough is enough," I will continue to send loving kindness and prayers for peace for the journey.

Sent by grace | 9:49 AM ET | 09-11-2007

Hi Leroy,
It does get very discouraging. I have a friend in a clinical trial for leukemia and she has had a very rough time and now questions whether to even stick with it. But then again, what if it helps after all? There is never an easy answer - I went thru a very difficult time deciding whether to have chemo or not for my breast cancer ( I had one doctor tell me yes and another tell me no)and finally had to trust my gut instincts. I also got into a clinical trial and ended up having to quit because the side effects were too debilitating. You can only do what u can do.
My heart aches for u having to be in this position - hoping u find the answers u need,

Lianne

Sent by Lianne Friedman | 9:58 AM ET | 09-11-2007

Leroy,
I understand your thoughts totally. I have stage 4 lymphoma. They offered me a clinical trial to start with. One drug therapy verses 4 drugs. It was in Phase three. So after a lot of discussion we went with the trial. I was waiting at that time for a donor for bone marrow transplant. I was lucky it put me in partial remission and cleared the bone marrow. That was what we wanted. I went on to have a year off then Chemo again.
then they stopped cause it made me really ill. But just what I had got me through to the next form of treatment..Which had just been approved when I was diagnosed. My doctor at that point was collecting data.And said in no way are you getting that drug till I do more research in 2001 when I relapsed.My doctor told me I want you to have the opinion of the Bone Marrow Specialist and a bone marrow biopsy. That would tell them more . I was so lucky my bone marrow was clean and in really great shape. It gave me the option to enter a trial of the leukine and older drug used with lymphomas and leukemias and Rituxan and monocolonal antibody. ( which was out in 92 but not FDA approved till 97) The data was in that Rituxan was working but would the combination on stage 4 wide spread disease. It did and that was in 2001. Would I do a trial again? Hell yes. One reason is that they have to collect data..and they watch those in trials very close. We as patients are a big part of whats happening and I would do it again in heart beat if it benefits others.
As for guinea pig... I didn't feel like that as all. I kept thinking pioneer and moving research further. But thats me. I want more things out there. Educating myself and my doctors to help me do thats a plus.
I am not a traditional person and there is no box. My thought is this . If it gets me from point A to point B and I am still here. Then we can look at whats next.
The other thing is they told me it would give me 18 months. Its been 6 years today. Just as they told me three months in 97 and its been almost 10 years.
Had I stayed in the proverbial box where might I be. I won't ever know that. But I felt educated enough by my medical team to follow through.
I got faith what ever your choice ends up you will check it out and do the best you can as well.

Hang in there...Have a great day

Sent by Kerry | 10:05 AM ET | 09-11-2007

I know we may talk about not having regrets with our choices. That is just being unrealistic. The very nature of cancer means we are going to have regrets, and choosing when to start or stop chemo is the cause of those regrets.

I would suggest starting chemo.

It may work, or it may not.

But you will not have the regret of not doing everything you can to stop your cancer. And while you may say that it doesn't matter to you, it may very well matter to those who love you. They will regret your passing regardless, but they will not have the burden of feeling like they didn't push hard enough. That is was their fault for you wanting to not be sick, so you didn't take chemo.

I know it is complicated, but we are not in this alone, and there are times when we have to think of our loved ones before ourselves. We would do it in a fire; making certain our family was out perhaps at the expense of our own life. Taking chemo is like going back into that fire.

As always, good luck with your choice.

Sent by Brit | 10:07 AM ET | 09-11-2007

Initially I too was anti-clinical trial. In my mind this suggested that all convention options have been exhausted. But I did my research and changed my mind quickly. I had to because my doc needed a decision. I participated in a clinical trial as my first line treatment to Stage IV. And it worked! The trial examined the combination of two drugs at various dosages/schedules. One drug was already FDA approved while other is not yet. I will be totally honest and say that I did this for me and not for future patients who may benefit, although I'm very glad that they will benefit as the results look promising.

I'm sure you will continue to keep an open mind. I remain inspired by you and your postings.

Sent by Olivia | 10:15 AM ET | 09-11-2007

Leroy:

I've been in treatment for metastatic breast cancer for 3.5 years. I'm 44 and want to fight like hell. Like you, I've been through many different treatments. I pushed my doctors "outside" the box when all they would offer was standard chemo approaches. Most recently, I've been on a clinical trial. It always seemed to me that it was a hail Mary move, that a clinical trial was a shot in the dark because I had so few other options. The one I'm on at UCSF combines a standard chemo with a particularly high dose of a new pill (on the market, but not at this level). It's been the most remarkable thing for me. Never had regression of tumors before, just periods of stability followed by resistance, progression, and then another plan.

It hasn't been easy. A couple days a week I was chained to the toilet. But the other days I was out there working and living as best I could.

I encourage you to remain open that perhaps something could work for you. I was skeptical, and now want everyone I know to be on this treatment...

Thank you once again for giving us the opportunity to discuss so many important ideas and points of view.

Sent by Laura Buckley | 10:16 AM ET | 09-11-2007

Hi Leroy and all,

Whenever your message hits so close to home it is very reassuring to me. I know exactly how you feel about questioning whether or not you want to go through the chemo again. It always upsets my family when I say that, but it's true.

I hope there will be some new treatment for you to try. You have become so important to all of us and we care about you and want you to live long and be well. Thank you.

Sent by Laurel M. Jones | 10:22 AM ET | 09-11-2007

Leroy, I was in a clinical trail for 10 months last year, and would have completed the entire year except that my cancer returned 10 months in, followed by more surgery and radiation. I joined with those noble thoughts about how it might help me and will surely help future patients. Since then my perspective is to really weigh the options and know that any clinical trial will be time consuming and have side effects that of course are not totally predicable. You are still recovering from so much pain and so many procedures. You have not had much time away from doctors and hospitals. I know you will do what is best for you and balance "enough is enough" with a willingness to explore options after consulting with your doctors and family. Whatever decisions you make along this road, you have all those who know and love you and also the people who just know you from this blog who keep you in their minds, hearts, and prayers. Take care, Leroy.

Sent by Karen | 10:28 AM ET | 09-11-2007

Oh LeRoy, this is the first time since I've been reading your blog that I have felt you wrote something that didn't come out of my own thoughts. Clinical trials are NOT using humans as guinea pigs!! I truly feel that the care and treatments options are so much better with clinical trials than standard of care. We all know the stats associated with standard of care, and truth be told, most the time it just sucks! The way I view clinical trials is that it gives us opportunity to try TOMORROWS treatments today! We can take advantage of newer, less toxic treatments of the future, but through clinical trials we can try them today. Many, many times these treatments are better, safer, and tolerated better than standard care. And they monitor everything and head off any side effects before they get out of hand. I was so surprised at your remarks regarding trials because you have always struck me as like myself--someone who is willing to push the limits, try whatever they can throw your way and think about your next plan of attack. To me, clinical trials are a wonderful option-- and the way to go. I would never settle for just standard of care, which I know has little hope of helping when I could possibly try something newer, something that possibily could save my life, or at least give me enough time to see my children graduate--and then some.

Lori

Sent by Lori Monroe | 10:38 AM ET | 09-11-2007

Leroy,

Please listen closely. You and I are in the same place mentally. I'm about to call my doctor today to arrange meeting with him tomorrow so that I can tell him that I do not believe this current chemo is working. I've had just about everything done to me also. As a last ditch effort I have been researching a technique called Insulin Potentation Therapy (IPT). I contacted 3 of the top 6 major cancer centers in the US about this therapy. I???ve built quite a network of cancer experts over the past 2.5 years. The response from one was, "absolutely ridiculous." The response from Johns Hopkins was that no IPT trials were currently taking place. I'm stubborn and this has not yet deterred me. If you search "IPT cancer" in Goggle, you can find more than a dozen smaller clinics throughout the US performing this cancer therapy. You can find this approach used in other countries as well. I have not made the commitment yet to try it myself and have been looking for independent sources to verify the claims made by the clinics offering this treatment. I posted a comment last week on your blog looking for someone who has had this therapy and no one stepped forward. I have begun talking to doctors in these clinics and they all have the same message... this will be the way cancer is treated down the road, some say 3 years, others 5. If it really works, it would probably take closer to 10 years to become part of a standard cancer protocol. It is chemo, but it is kinder and gentler without the harsh side effects. Go ahead, you are an investigative reporter, use your skills and energy to investigate this therapy (or at least talk it over with your doctors at Johns Hopkins). What have you got to lose? Your life? If you contact me, I can give you the details of my research to date and the web sites that seem to be the most useful.

IPT uses the cancer cells ferocious appetite for glucose to deliver FDA-approved chemo drugs to the cancer cells. Cancer cells have 10 times the number of glucose receptors that normal cells have. So, insulin is used to lower the glucose in your body making the cancer cells even hungrier for the glucose and then uses small doses of chemo mixed with glucose to target the cancer cells without targeting all the healthy cells, avoiding the collateral damage that chemo reeks throughout your body. There is some risk here as the body needs to maintain a proper glucose level, but it looks like this risk is mitigated via close monitoring and the feeding of glucose during the treatment. Let me ask you one question before I leave this subject. Why is glucose (F-18) mixed with radioactive molecules used in PET scans to light up cancer cells? Answer, because the glucose is attracted to the cancer cells and this creates hot spots with the concentration of the radioactive molecules. This therapy has been used on cancer patients since the 1930s. I???m not a doctor or a medical researcher, but intuitively, this makes common sense to me. One doctor told me yesterday that NIH has recently funded a study to collect data on the effectiveness of this treatment. I have not yet verified this claim.

There is a huge disconnect in my mind as to why the larger cancer institutions have not embraced this therapy. Maybe it is ???absolutely ridiculous.??? But, there are testimonials out there by people that claim this has saved their life. I do not find that ???absolutely ridiculous.??? Especially when that life may be my own.

My best to you in whatever direction you take,

Ed Steger
www.hncancer.blogspot.com

Sent by Ed Steger | 10:54 AM ET | 09-11-2007

Leroy, I'm a stage 4 colon cancer patient like you. After doing the research, it's clear to me that, with metastatic colon cancer, chemo provides no hope. It's just all that the docs have to prescribe, so they do.
You're not a quitter, and neither am I. But we're close to the end of our ropes. So let me add a very real, viable option to your list:
http://www.immunemedicine.com/
A friend told me about the ITL Clinic so I checked it out very thoroughly. They are doing immune therapy that pumps up your immune system so that it can rid your body of the cancer cells. After a lot of research, a visit to the clinic, and talking to numerous past patients, I was convinced that this was the absolute best solution and provided a strong probability of long-term, cancer-free survival.
I'm now at the clinic, beginning treatment, and still reading your blogs every day. And every day I meet someone here who has an amazing story to tell. You owe it to yourself to hear them and decide for yourself.
Not time to quit just yet . . .

Sent by David Hahn | 11:04 AM ET | 09-11-2007

Leroy, All this decision making sure is frustrating. Clinical trials may very well be the way to go. Is there anyone in this group who has gone through clinical trials. I am very interested in hearing your stories.

Sent by Ruth White | 11:12 AM ET | 09-11-2007

As many have commented along the way, the challenge for many is to find the "right" treatment or drug or combo of drugs that works for them. I know people who have had great success with clinical trials and others who have had no success...so what else is new about the cancer fight!! It is certainly working examining closely but do some homework so that you understand the purpose of the trial beyond the obvious. See if you can talk with others who have or are participating in such a trial. At least you will have a persspective from a patient.

I am not eligible to participate in any melanoma trials due to the fact that I have had renal cell carcinoma. The researchers don't want to possibly compromise the results due to another type of cancer.

You may find yourself excluded from many trials due to your brain mets, prior treatments, types of cancer, etc. That should not prevent you from exploring your options. We are all trying to stay al least one step ahead of the cancer.

Lots of info on trials at the NCI database which you can Google. It will probably make your head hurt from reading about so many trials but I do go there from time to time to see what options I may have, if any.

Best wishes. Blessings and prayers.

Sent by Al Cato | 11:16 AM ET | 09-11-2007

The idea of clinical trials is scary to me, but I think that if and when I get to that point, I'll investigate thoroughly first and then probably give one a try. As for more chemo, well, I personally could never fault anyone who decides "enough is enough" and makes the tough decision that quality of life is more important than quantity. On the other hand, each person can react differently to different drugs. Maybe the next round wouldn't be so horrible for you...? I just remember a very well-intentioned social worker (who had dealt with cancer patients for years) giving me vivid descriptions of the torture I would go through with my upcoming chemo and radiation. I left his office stunned and scared to death. Well, the treatments weren't fun. But they were certainly bearable in my case, and not anywhere as bad as his prediction.I never want to do it over again -- but I will, if that seems like my best shot at staying alive. Maybe in your shoes, my decision would be different.

Have a good day, Leroy and all the blog family.

Sent by Doris | 11:16 AM ET | 09-11-2007

I was on a clinical trial for my breast cancer. It involved three chemo drugs instead of two then one, and at higher doses. The newer drugs are just the old ones that have been given more antinausea qualities to them. I did pretty well considering. I'm in radiation treatment now and in some ways its harder than the chemo, or maybe because of the chemo my body isnt as strong, who knows.... but i am glad i did the trial. I know its a personal choice and you just have to go with your gut.

Sent by Jenn | 11:22 AM ET | 09-11-2007

Leroy,

Hang in there you have many options. Please use your resources and look into treatment options in Europe. They are doing remarkable things, light years ahead of this country. The constraints of the FDA so limit what can be done here. Please look into it, for all of our sake. You are going to win this battle, I just know it.

Sent by mike dougherty | 11:35 AM ET | 09-11-2007

It has to be very hard for you to decide what more you can do. my 42 year old son with lung cancer knew any more treatments wasn't going to prolong his life. this had to have been hard for him to say enought treatments.

Sent by delores | 11:39 AM ET | 09-11-2007

Leroy- it sucks to have to make these decisions ourselves. We'd like the doctors to say "this is what you will do next". If you start chemo and can't take the side effects, just stop when you feel like it. I know my sister did. I love that you still have your humor. I think it puts us all at ease that you can still be funny. But we know you have serious moments and thoughts too. Hang in there buddy. I look up to you and I don't even have cancer. But if I ever do, this blog has given me hope. Take care Leroy!

Sent by DiAnn | 11:43 AM ET | 09-11-2007

Leroy, I read your words and it's as if they mirror words I'd written in my own journal, several times.

Most everyone thinks, at first, that they'd do anything they could. Diagnosed in Stage IV with inoperable liver mets, I gave my local doc permission to be as aggressive with chemo as he could be. And he was. And I was one of the lucky ones...after 16 cycles, it did reduce the tumors in my liver enough to make it safe to operate. But at the end of those first 16 cycles, I had a month-long break over the holidays, and I'd made up my mind before I heard the news that I wasn't going to spend whatever time I had remaining tied to the infusion schedule and having 7 bad days for every 7 good days.

Then I woke up from surgery with a liver pump instead of liver resection, and heard that I'd need more chemo. And I wasn't sure I could do it, or wanted to do it, but I tried. And it seemed to be okay...for awhile. But 13 monthly cycles into that, I was feeling like a mouse on a wheel, still tied to an infusion schedule and although I was having more good days than bad days, I felt like I was treading water. I was ready to say 'enough is enough--when is this going to stop?' And the MSKCC doc said, before I could ask that question, 'well, I think you're down to two tumors in the liver and eligible for resection surgery.' Another surgery. Another reprieve. Okay, what the heck...the alternative is not a realistic choice, let's operate.

Then came clean-up chemo, those cycles they give you post-surgery to ensure that there is no cancer cell left behind. I finally said 'enough is enough' after 6 cycles (they wanted me to do 12). I said show me that it will improve the odds and they said they couldn't, and I said, 'ok, then this stops now.'

I know what you mean about not wanting to try another thing, not being sure about clinical trials. I am not sure, after 39 cycles of chemo, that I could do any more. I know I would need to check out a clinical trial very thoroughly before saying yes...although I have always taken the position that if I'm not going to live through this, medicine should get as many chances to learn about CRC from my disease as I can mentally give them.

But push come to shove, I've learned that I'm a lot stronger than I thought I was going in. And as alone as it feels, know that all of us are right there feeling that decision process with you. Good thoughts, Leroy. Be in harmony with your expectations.

Sent by Pat | 11:55 AM ET | 09-11-2007

Leroy,

I have an uncle who was in a trial through Sloan-Kettering and it gave him more time than he figured he'd get with traditional treatment. I think he just started with the trial. He was a doc and knew what happens with the cut-burn-poison route. I hope you go for it as long as it seems worthwhile to you.

Sent by Diana Kitch | 11:58 AM ET | 09-11-2007

Good morning, all. I'd light to highlight something that Olivia alluded to...the term "clinical trial" is very broad - -it refers to a "spectrum" that starts with Phase I studies in which the investigators are trying to determine the safety and efficacy of various doses of drugs not yet approved by the FDA...through studies in which patients are offered(usually via the "random" flip of a coin) the opportunity to compare 2 FDA-approved drugs that are known to be effective and can both be considered "standard treatment"...through "post marketing" studies of drugs already approved by the FDA.

In other words, just because your doctor mentions "clinical trials" does not mean that you are "end stage" and conventional treatments are no longer available. Yes, it does mean that SOMETIMES, but not always. So it's really important to ask your physician (1) what is/are the "standard treatment(s)" for my disease and (2) how does the study protocol differ from standard treatment in terms of side effects, known efficacy, outcomes, additional procedures (eg extra blood draws, radiology procedures, visits to the hospital) etc. You may also want to ask questions about whether, if there are extra procedures etc that "standard treatment" would not require, WHO PAYS for those (as sometimes your insurance may NOT cover them).

DO NOT hesitate to ask as many questions as you need to understand all aspects of the study (but at the same time, if you're not the "questioning type", that's OK too!). You will be given an "informed consent" form to sign, but it will probably NOT answer all the questions you may have, so ASK YOUR DOCTOR or the research nurse (who is probably the one with whom you'll have most of the conversations about the clinical trial and who is usually extremely knowledgeable about the details of the study).

I am extremely familiar with clinical trials, having worked in medical institutions for 2 decades. And I am totally supportive of clinical trials. Even so, when I was offered the opportunity to be in a double-blinded, randomized trial (meaning neither I nor my doctors would know what tx I was getting, and my tx would be decided based on a coin flip) comparing the standard breast cancer treatment to an "investigational" treatment, I declined to participate - - although with tremendous guilt, knowing that the options available to me were only out there because women before me had agreed to participate in clinical trials themselves.

This is a complicated thing. But one message I want to be sure to share is this: being offered a clinical trial does NOT by any means suggest that your doctor thinks your case is hopeless - -far from it, in many cases. So just be sure to ask enough questions so that you feel you understand sufficiently what your options are.

Cheers.

Sent by Suzanne | 12:01 PM ET | 09-11-2007

Leroy,

I wonder if you should reconsider chemo.

I've been following your blog since the beginning but this is the first time I've written.
Your blog came at the right time for me and has been invaluable in helping me deal with events in my life. My fiance was diagnosed with stage 4 appendiceal cancer in June of 2006.
They put him on Folfox and avastin. It made him pretty sick but was shrinking the tumors. Out of the two week cycle he would get only three or four OK days then back to feeling miserable.
After a wonderful break the doctors put him on Folfiri and Avastin. Since he'd had such a tough with the Folfox we were worried about the side effects of the new drug but our fears were unfounded. The Folfiri seems to be much gentler on his system. He rarely has a bad day (and he still has his hair).
I know that drugs react differently with all people but it might be worth a try.

Thanks for helping me to understand this beast from the patient's side.
It's amazing to me how often your blog deals with a topic I've been wrestling.
You are an inspiration!

Sent by Jennifer Costa | 12:07 PM ET | 09-11-2007

My Husband just started a clincal trail in Boston Mass, so far so good no bad side effects at all, It is a phase II trail for small cell lung cancer that has come back. He wanted to do these trails in hope to find a better drug than the 2nd line chemo Topetcan, and also He can always resort back to the 2nd line if this one is not working. His care is wonderful, and He gets monitored very close by Dr.'s as well.

Sent by Karen | 12:25 PM ET | 09-11-2007

Hey Leroy,

Hitting below the belt in this fight is fair. It's as if the cancer knows what they'll do, so, do something atypical and it may put into panic mode. While I was going through my treatment, someone asked if I was being treated or being a guinea pig. Luckily, my treatment worked and I'm fine for now. I think if you choose a clinical trial, it could justify the pain and fatigue. But to go through another bout just to go through it; now that would be a tough call.
That's what happened with my mom some 14 years ago. I think she had just enough control left to just shut down. I didn't understand it then, but I do now.
Whatever your decision, I know it'll be the right one for you.

Stay safe, stay strong my friend,

Sent by Lance Carlson | 12:36 PM ET | 09-11-2007

I'm heading into a clinical trial, too. I have other options, but this particular trial offers a viable chance of keeping the tumors just where there are or at least not feed them blood cells they so desperately want/need. I have a daughter and a granddaughter, sisters (biologically and spiritually); if they benefit I say let's go!!! I don't look forward to the side effects; I do look forward with hope - hope I can pass on to others.

Leroy, I know the waiting in between scans can be very tortuous. Trying to make the best decision for you......

Sent by Kay | 12:44 PM ET | 09-11-2007

Leroy,

Gina B's comments were right on target. You're the one that has to go through the chemotherapy. Our son, Andrew, now is at Stage IV melanoma cancer. He is participating in clinical trials at NIH. We will see the results of the Interleukin-w treatment on September 25th. There are not many treatments for melanoma. He has had surgery, radiation and now Interleukin-2. This road we are travelling on is very scary. Thank you for your comments. I appreciate them so much and look forward to reading them. They have helped me cope and sometimes laugh.

Sent by Maureen P. | 12:54 PM ET | 09-11-2007

Howdy, All!

A clinical trial was the first thing suggested to us once we learned surgery wouldn't provide the cure they thought it would.

No small surprise that those sponsoring the study advocated that participation was "a contribution to future research." Coming from a teaching/counseling/research background, we were all too familiar with those arguments. Being at a teaching university one rather expects to find, and look forward to, clinical trials in many arenas.

What we also noticed was an uncertainty on the part of all billing agencies as to how our insurance would support our participation in the study. That included hospital personnel as well as our current employer. *sighs*

We also noted from personal research that one of the study drugs would soon become available commercially and should that happen while we were participating in the study, we would be looking at costs over $20K just for the drugs...

We noticed there were no guarantees, securities, warrantees, promises, let alone monetary compensation, for participating in the study...

We noticed the 'team approach' to be much more infused into the pattern of treatment and care prescribed with the clinical trials. There was a Case Manager who coordinated communication among all of the departments and personnel involved, including us.

All of that fell away very quickly as our dx was re-staged and typed making me no longer eligible for that particular clinical trial. Now we're back to the unglamorous chemotherapy/radiotherapy treatment schedule in departments that are a city block apart, where funding resources appear to be much more limited.

Because we have access to all of our records, we know that the various departments are being kept in the link/loop, but the warm, enveloping, welcoming embrace of that Clinical Trial Team is nowhere on the horizon.

I'm now thinking it's time to take what we learned in our brief foray into how clinical trials are monitored and become our own Case Manager: to arrange a meeting with Dr. B, both of his two half-time nurses, Dr. C and his two nurses, and Dr. A, my new internist/physician, the dosimitrist and the physicist, to plan things from here.

In the meantime, we're trying to piece together what the technician meant today about the "Booster Treatments" she saw in our file -- given that our last radiotherapy treatment was to be a week from tomorrow...

So it seems we're swapping places, Leroy. Who knows, mayhaps we'll be adding to _our_ list some of the things you've experienced and taught us about.

I hope our brief experience with a Clinical Trial is of some help as you begin those dialogues. And, that you remember that the primary is _you_, we, the beneficiaries of all this research, are secondary and still very grateful.

A new full-time job, indeed!

Here's to hydrating and healing!!!

*offers a tall glass of iced water*

-dp

Sent by dp | 12:58 PM ET | 09-11-2007

Leroy,
I just discovered your blog today and I appreciate your sharing. I'm a one year survivor of metastatic colorectal cancer and am glad to find on online community that's not afraid to talk and laugh about death and the difficult parts of our diagnosis. Good luck with your decision making. I look forward to reading your daily blogs as I've found it impossible to put my situation into words but I recognize all of the sentiments expressed.

Sent by Miriam Gilligan | 1:09 PM ET | 09-11-2007

I've only got my experience to speak from.

Following a craniotomy to have a plum-sized tumor removed from my brain, all my doctors told me the "gold standard of treatment" for this type of tumor (astrocytoma -- pretty nasty) was radiation and concurrent oral chemo (Temodar). So I did that for the prescribed six months.

One month following the end of treatment, my tumor return. Twice as big.

The standard protocol for the next step was frightening. They wanted me to check into the hospital for two days every two weeks, let them snake a catheter up through my groin to the tumor site, and have chemo delivered directly to the tumor. Sounds gruesome. Lots of potential bad side effects, like stroke. I took a pass.

But only because my neuro-oncologist was trying something new. He was doing something called prescribing off-line. That means he was using two drugs that are FDA approved for colo-rectal cancer on folks like me with brain tumors. He's a very bright guy, tranined at Duke, which is one of the top brain tumor centers in the country, so I said, "What the heck."

One year later, I'm NED. Wow. Now we'll see if it holds the tumor from reocurring.

He's got about 40 people on this protocol, which is a good-sized sample for something so "experimental." I said to him recently, "This is really working, isn't it?" He nodded and humbly said, "Yeah, about sixty percent." Pretty darned good.

So I'm all for taking the road less travelled.

It's tough with all the crazy nutso cancer treatments out there, but thoughtful, scientific treatments are available outside the "gold standard of treatment." Excuse me while I chemo barf all over your shoes, doc.

Love to you Leroy, and to Lori. I can't wait to hear what you decide to do.

Sent by Jordis | 1:14 PM ET | 09-11-2007

I would say, 'give it a shot'...you never know. Hence the "trial" part, I guess.

I said 'yes' to a clinical trial four years ago for my flavor. As anaplastic astrocytoma's five year survival rate is 18%, I didn't hope for much. But scans have been clear for three years and counting and in that time I've lived life to the fullest.

While I know my trial was not successful for all those that tried it, and that it never went to market, I was fortunate. Whatever trial you find could be for you too. In the meantime, I figure new treatments are found every year, and the time I bought by the trial I participated in may be enough for a breakthrough elsewhere. A breakthrough that others who signed up for a trial will likely help bring to market.

Trial and trial again. Sooner or later something is gonna work. If not for us, then for future generations.

Sent by Ariella in NH | 1:45 PM ET | 09-11-2007

Hi Leroy,

Keep breathing, and cry if you need to. You are in a hard place, to say the least. Here's a cyber-hug, hand, shoulder.....whatever would help you now. I care. Everyone out here cares about you a lot.

You and Laurie feel free to lean hard on the people around you. We can carry you for awhile.

peace and Mattie Stepanak's heartlight,

Kim Blankenship

Sent by Kim Blankenship | 2:49 PM ET | 09-11-2007

Dear Leroy,

The tone of today's blog makes me very sad, especially the part about not wanting to give chemo another try. Please don't give up Leroy.

My husband has been on chemo for the past 18 months with only two six week breaks. They have tried many different drugs which never gave us any positive results. They cannot get the tumors in his lungs to shrink and they told him he is not a candidate for RFA. However, they are now trying a combination of two drugs, one of which is used for womens breast cancer. His oncologist claims that they have had some very good results with this combination. (Taxotere and Xeloda) I was not told that this was a clinical trial, but the fact that Xeloda is a drug for womens breast cancer makes me wonder. He will have two more cycles of chemo and then go for his CT scan in October. I am hoping for some positive results.

Prayers to you and Laurie............whatever you decide. I wish only the best for you.

Sent by sasha | 3:12 PM ET | 09-11-2007

Dear Leroy,

I was diagnosed with Stage IV colon cancer with mets to the liver on July 22, 2004. My birthday. The initial doctors said I had 18 monhts to live tops, but that I could die at any minute.

I did my research and went to a great hospital. I signed up for a Stage II clinical trial. I knew I wanted more than the standard treatment, and I believe that is what has made the difference for me.

I had my colon surgery on August 13, 2004 (Friday the 13th, which I wanted to change the date, but my doctor assured me I would be fine). I had my liver surgery on September 13th, 2004. I finished my chemo mid June of 2005. I have no evidence of disease and have had no recurrences.

I never once considered myself a guinea pig, I consider myself a pioneer. The clinical trial has shown promise to be more effective than standard treatment. I am thankful I tried it. I wouldn't be afraid to try one, and none of the medical personnel treated me like a guinea pig, it was just the barage of questions and weird looks from my friends wondering why I would go for the unknown that bothered me.

Imagine if no one had ever tried to fly, where we would be today.

Good luck.

Sent by Dorothy | 3:38 PM ET | 09-11-2007

Leroy, Sounds not so good. Of course, we all knew, or suspected, that the bullet approach would eventually give in to the shotgun. Chemo is the shotgun, I am on it, and only have twoother Chemo options, should this one stop working. Surgery is not an option, at least not right now.. Clinical Trials are options, but it is very difficult to qualify. Do your research, and listen closely to the Doc. What else is he trying to say? Difficult circumstances. At some point, you have to ask, how far are you willing to go? Trails and the experimental drugs that come with them, may rob you of any kind of quality time with your family and friends. I will face these choices too, probably sooner than later, we all run out of shotgun shells. Thoughts are with you, Stan

Sent by Stan Wozniak | 4:01 PM ET | 09-11-2007

Okay, so this must be one of the reasons why I have been reading this blog for over a year. I don't have cancer, no one in my immediate family has cancer and yet I still feel so connected to all of you. Leroy, you are the man! Such wit, such grace I have rarely seen. The reason I am writing today is to say something about clinical trials. I have been involved in clinical trials most of my professional life and I am always floored when someone says they feel like a guinea pig...yikes, that hurts! Clinical/Research trials are there for so many wonderful reasons. Keep in mind that almost without exception, every medicine currently on the market, every procedure now considered standard of care was once in a clinical trial checking safety and efficacy. How do you think you were able to have ALL of those procedures you listed in your post...someone had to say yes before you! What I like to tell our patients is that when you particpate in clinical trials you have another set of eyes on you...and research has shown that those who participate in trials statistically do better than those who don't - even when they receive placebo. I'll hop off my soap box now and leave you with one more resource. If you go to the website www.clinicaltrials.gov you can search for all kinds of studies. You can search by disease, the area where you live, etc. Good luck and wishing you all the best.

Sent by Peggy | 4:07 PM ET | 09-11-2007

I just returned to your blog. It is late afternoon now, and I wanted to read all the messages which have been left since this morning.
Know what Leroy? You spoke. a while back, about whether or not there was anything funny about Cancer and jokes about it. Well, after reading through them, and many of them sound intelligent and caring, it occured to me that today we all sound like, "although we are not Doctors or Researchers", as Ed Steger put it, it does sound like we ALL must have slept in a Holiday Inn last. night!

Sent by JCR | 4:35 PM ET | 09-11-2007

I don't know but I don't feel robbed at all from doing a clinical trial.Yes there are problems that might come from any chemo radiation or any treatment we do,clinical trials included . Nothing I have done has been easy.
I was 41 when I started out I want more time the clinical trials brought me the time I needed with my 4 kids. If anything I am blessed.
I have a clear cut option with the trial drugs I used if it comes back to use them again. In that aspect I am fortunate. Plus all the options of the traditional chemos out there for my disease. Three treatments two struck out that didn't give me full remission. One the last one did.
I agree some don't work and that its like a needle in the haystack to find them then be accepted. But thats were the our doctors work for us and help us with that.
By no means was the trial I did easier then chemo. Just different on a different level
I guess my thing is..I am still here six years later after four years of struggles and almost dying three times.
Its been a long haul. My thought is my Doctor was awsome, he really did work in my behalf as did the Bone Marrow Specialist.
What amazes me is that in some large city hospitals many pass up Clinical Trials. I was told there were something like 20 of us that said yes. The rest basically said no way they would. Whether they didn't understand it or wanted to thats how it is. My Doctor told me it happens all the time. My thoughts were if it helped me and bought me the time. What the heck then they proceeded to educate me to the best of their ability. I think thats the key.
You also need to think about it whether the trial is phase 1 2 or 3. To make a choice.

I also went on line two support groups with lots of knowledge . Then to
www.clinicaltrials.gov and www.acor.org
to read further.

I think thats important you can't go into it cold turkey at all.

Depending on the situation I would consider it again. When your looking down the barrel at Donor Bone Marrow TRansplant. As I was. Having good options was a great thing.
One other note on my situation it took 9 years and 27 days to find a donor. So I was lucky to have options.
Hope it helps some.

Sent by Kerry | 5:29 PM ET | 09-11-2007

Thanks for this blog. I read it everyday & always get something out of it. I have been a nurse for over 30 years & delt with cancer a lot, but I really didn't get it. I get it now since my husband's diagnosis of lung cancer Feb 2006. You have to live it 24/7 to really get it. He goes tomorrow for his 3 month check up PET scan. We then wait 1 week to get the results. I hate that week more than I can say. We go to the doctor's office & sit & wait for either a death sentence or see ya in 3 months, it is the most awful thing to do to people. I know one day they will say "it's back", but until then we just go on. We are lucky because he should have never made it to the 12 month anniversary & the surgery to remove his entire lung & chemo treatments are what has saved him. The question is at what cost. He cannot do much with 1 lung & he has terrible peripheral neuropathy from the chemo. Please keep this blog going because somedays it is all that keeps me sane.
Kathy

Sent by Kathy | 5:38 PM ET | 09-11-2007

Leroy, after 2 rounds of treatment for 2 separate episodes of cancer I have a new motto, "No More Chemo". I leave open the possibility that someday I may change my mind...buy I highly doubt it. The decision is yours, no one elses. Good luck with whatever you decide to do.

Sent by Beth | 6:06 PM ET | 09-11-2007

Leroy I read your entry today and felt a heartache for you. Do what you feel you need to do for yourself and never look back. It is a hard decision to make when it comes to final solutions. A spititual hug for you.

Sent by Pat Zalewski | 6:36 PM ET | 09-11-2007

I agree that you should look into clinical trials. Find out what options you have and research them. I am in a trial at NIH and have met several success stories in the waiting rooms. I don't know if mine is working yet, but it did show good results in the mice :) You are close to NIH so you may have more options available than just those at JH.

When I was told that I would likely be dead in 12 months, I wasn't sure what to do. I finally decided to pull out the big guns and try something different. If this doesn't work I will reevaluate. On another note I have done 8 different chemo combinations and 2 of them have virtually no side effects. Hang in there...

Sent by Jill | 7:02 PM ET | 09-11-2007

Leroy,
I know it's late in the day, but my work day just ended and I read your blog a few minutes ago.

I hope you still read this. My husband went through a clinical trial, pretty much for the same reasons you stated--could be a good thing for you and a good thing for the future. And you need to stay alive for the next great treatment. If your oncologist, like ours, is understanding, she/he'll coordinate with the trial team and make sure you get what you need when you need it.

I know that my husband lived an extra year because of that trial--not because of the trial itself, but because if something came up (like brain mets) our oncologist fought to get stereotactic radiation surgery for him so that he could continue the trial. He wouldn't have received that treatment if he hadn't been in a trial.

I also understand your thoughts about when enough is enough. I think the hardest day for me was when my husband said, "Enough." Of course I had to respect that but it was definitely the worst day of our journey for me. I realize now just how hard and courageous that decision was for him to make.

I can only continue to pray for, and admire, everything my husband, you and the rest of the cancer family go through on a daily basis.

God bless.
Kathy B.

Sent by Kathy Barney | 8:04 PM ET | 09-11-2007

Dear Kathy,
I'm so glad I read your Blog today because I too am trying to keep sane.My husband's been dealing with lung cancer since Dec. 2006 and he's been on Chemo since Jan. He also has terrible neuropathy and in addition other physical ailments. It is difficult to distinguish which symptoms are caused by the Chemo and which ones are coming from the cancer. I can really identify with your statement that you never got what it meant to have cancer until your husband got sick. This is the reason that I read this blog everyday. Everyone who writes in "Gets It" and reading all of the posts makes me feel "Normal".

Sent by Elaine | 8:10 PM ET | 09-11-2007

Where does the magnaminity to care about others "down the line" come from, I wonder. Where in your human soul does that ability live?

Sent by Joyce Smith | 8:24 PM ET | 09-11-2007

Dear Leroy We are in the same place treatment -wise,but i did go through a clinicle trial last year. My husband and i would fly to Boston every 3 weeks for treatment (from S.W. FL) and stay 3-5-days. The travel was tough and the treatment wasn,t so bad, but it was not the right chemo for my sarcoma. I am now on Nexavar for liver and lung mets. I would do all this all over again, maybe it will work, and if it doesn't maybe something else will come along.The surgeries have been life lenghthening and i do buy time with the chemo. All these treatments are my choice...maybe i am a masochist.ha! The nexavar does have side effects and i do go off of it so i can get some health back. Maybe this is THE ONE !! Take care ,,xo dee

Sent by dee congress | 9:14 PM ET | 09-11-2007

In some ways, Leroy, you are lucky to even be offered a Clinical Trial. Burge's met's moved so quickly, he was never considered a candidate.

In a very bazar way, I wonder just how much of our success is just our "karma". Although I was raised Presbyterian, I never liked the "simple answer....it was their time" to why someone died, or lived. But as I have traveled in the Cancer World, I can't help but wonder how much of what happens to us is simply the "luck of the draw."...the right doctor answered the phone; the surgeon had a headache; the surgeon had a great day; the one in a million stents failed.

More than twelve years ago, my Mother had a stroke and was referred to a young doctor just out of school. When things looked bad, he referred her to a group of doctors in Dallas he had studied under who were "trying new things". After consulting with them, it was decided to try the new surgery, and we spent the night with her in the hospital. Sometime during that time, she turned to me and said, "somehow, I think we are trying to make decisions that should be left up to the Lord!"

I worried about that all night, but in the morning, did not question the doctors. Just before time to move her to the operating room, however, the doctors came to us to say they had changed their minds...the last scan had shown Mom's blood vessels eleminated her from the trial.

Later we learned that the "new surgery" was VERY NEW. Mother would have been the seventh patient...we had thought they meant the seventh that year...and the success rate was terrible. It took about a month for Mom to return to her old self, but she continued to live a healthy life and turned 95 last month.

I guess my point is, no matter which way we choose to go, the outcome may not be up to us, but in the dark of not knowing, all we can do is go with our gut feelings. I pray that no matter what you do, Leroy, it works for you. I don't know what we would do without you here to write your blog.

Nikki

Sent by Nikki | 9:41 PM ET | 09-11-2007

Hello Leroy,

I'm another voice that can only speak from my own limited experience. I was diagnosed with advanced ovarian cancer 18 months ago. Knowing the gloomy statistics on median time to progression (14-18 months, depending on which statstics you read), and overall survival, I was eager to participate in a phase 2 trial of a drug that is already approved for colon cancer. I wanted to hit this thing as hard as I could. Since it is phase 2, I know I am getting the drug. There is now also a large phase 3 trial ongoing. I received the trial drug along with my first line chemo infusions for 6 months, and then alone for a year following the end of chemo. I have my final infusion next week. So far, all the NED indications have been there since March of this year. So far, this has been the right choice for me.

Sent by Sheara | 9:52 AM ET | 09-12-2007

Leroy,
My husband was diagnosed with pancreatic cancer a year ago tomorrow and is in a clinical trial of a pancreatic cancer vaccine at Johns Hopkins. We live in Minnesota and will make our fourth trip to Baltimore in a few weeks. We feel absolutely blessed to have this opportunity.
After my husband had neoadjuvant chemo and radiation followed by surgery, we pursued the clinical trial. It seems that patients/families are often on their own in finding an appropriate clinical trial if their cancer center doesn't have one that fits for the patient. The NCI (www.cancer.gov) website is the most comprehensive, and it also offers information about clinical trials in general (explains the purpose and processes of each phase, questions to ask, etc.). Cancer centers often have their own clinical trials on their websites, but those that are posted may not represent all that they are currently conducting. The NCI listing is more complete and current. While the choice is entirely an individual one, I encourage you and others to give it some consideration. We've been treated wonderfully, and compared to other treatments, the vaccine has been gentle. Wishing you the best as you move forward, and thank you for your enormous contribution to understanding and normalizing the human side of cancer.

Sent by Diane | 11:18 AM ET | 09-12-2007

Hi Leroy,
I am currently in a clinical trial. I have found the experience to be very positive. There is that "guinea pig" sense that comes with it but there are so many encouraging outcomes that I have seen with myself and others. It is worth the exploration. Good luck and I know you will find the right answer for you.

Sent by Mina | 3:54 PM ET | 09-12-2007

Leroy,

What was so hard about your chemo? How much have you had and how long? I didn't have much of a problem with mine until the end when I had a reaction.

My cancer has helped me, in an odd way to become a better person. My positive attitude and writing about it on my blog has helped me get through easier.

I hope my blog helps others as yours does. I know yours has helped me. Thank you!

Brian

http://beyondtheglassdoor.blogspot.com/

Sent by Brian | 1:19 AM ET | 09-13-2007

I'm a believer in clinical trials. However, I'd be hesitant about a phase I trial, since it is just a dosing safety trial, not geared towards judging efficacy.

My only treatment was via a clinical trial. The care was OK, but not as thorough as I'd expect. I wasn't given a bit of advice (drink lots of water) that would have prevented some loss of kidney function. Disappointing.

Sent by Scott S. | 9:08 PM ET | 09-13-2007